Kaitlynn's Place

Writers Beware - Are My Readers The Reason My Google AdSense Account Was Just Canceled?

2012-01-26T17:39:00.000-08:00

This is simply a must read for any writer using Google AdSense. I've been using the ad program for years now, and never realized that all my hard work and earnings could be yanked out from under me for no fault of my own. I understand that Google AdSense must protect its advertisers from fraudulent and solicited clicks, which harm Google's reputation and the pocketbooks of the advertisers.

That said,I feel that Google AdSense also has a responsibility to protect those of us that place an ad to make not only us, but Google money. Termination, suspension, and disabling accounts shouldn't be done upon a mere suspicion. Granted, I don't know the internal process that goes on at Google Adsense, but I suspect that the "investigation" isn't so much of an investigation as it is some computer program sending up a red flag when any ad gets hit multiple times by the same PC. If so, this isn't suffice evidence to just disable a user's account and refund any/all earnings. After all, any writer can attest that readers will and have stooped to some pretty low blows when they disagree with the content of an article or blog post. I've seen threats, insults, name-calling, and pure word rage from simple subjects like coupons. I know I know that reader sabotage isn't always just online threats that never reach your real life; sometimes, those irate readers can cause you a world of trouble in real life.

See what happened to me here

Got 15 Minutes to Get 15 Freebies? | Gomestic

2011-08-25T12:12:00.000-07:00

Got 15 Minutes to Get 15 Freebies? | Gomestic

It's hard, no make that really hard, for families today to afford everything they need at the grocery store. Since my daughter was born with special needs that made it impossible for me to continue in my nursing career, I have sought out ways that my family could make ends meet with just one income and two kids to feed.

First things first, you need to find out all the ways that you can combine to really start saving big at the grocery store. Read more about "Three Ways To Actually Cut Your Grocery Bill."

Once you understand the methods you can use to save money, you can use "Your Complete Guide To How And Where To Get Grocery Coupons."

Finally, start stocking up on the freebies out there with "Got 15 Minutes To Get 15 Freebies."

Of course, it will take a little effort, but it's very possible to save on your grocery and household goods each month. Good luck and happy shopping.

Your Complete Guide on How and Where to Get Grocery Coupons | Gomestic

2011-08-21T00:07:00.000-07:00

Your Complete Guide on How and Where to Get Grocery Coupons | Gomestic

Great tips on how and where to find valuable, money-saving, free coupons! A must read for those straining to keep their grocery bills under control.

Casey Anthony Found Innocent By A Jury Of Peers

2011-07-05T22:20:00.000-07:00

Caylee Marie Anthony was denied justice today by a Florida jury. In one of the most shocking verdicts since the OJ Simpson trial, Casey Marie Anthony was found "not guilty" of all murder and child abuse charges. She was found guilty of four counts of lying to police, charges that carry a one-year sentence per count, but will likely be mooted by time-served and time-off for good behavior.

I realize that juries are comprised of people from all walks of life and with varying intelligences, personalities, and reasoning skills. That said, I’m astonished that anyone could ever dismiss the factual and circumstantial evidence proving Casey guilty of murdering, or at least endangering the life, of her two-year-old daughter, Caylee Marie Anthony.

To return an innocent verdict, this jury had to grossly ignore disbelieve points, such as:

1. Instead of grieving like any other mother that had lost a child, Casey partied with her boyfriend for over 30 days and failed to tell anyone, at anytime that her daughter was missing, hurt, or dead. It wasn’t until her mother, Cindy Anthony, tracked Casey down and threatened to press charges against her for stealing a car and money that Casey finally concocted her first story of “Zannie the nanny” kidnapping Caylee. Of course, she admitted this story was untrue and revised her account of Caylee's death to an accidental pool drowning.

2. As evidenced by her lies about everything from fictitious people to her fictitious job at Universal Studios, Casey is a pathological liar that can‘t be trusted to tell the truth about what really happened to her daughter. Therefore, without any evidence to support Casey’s story of a drowned Caylee, the entire story should be dismissed as yet another lie. Furthermore, Casey had previously refuted a drowned Caylee on two separate occasions prior to the start of her trial.

3. Various law officers; a tow yard employee; George, Cindy, and Lee Anthony; Dr. Vass from the “body farm;” a cadaver dog and handler; and the defense’s own bug expert all smelled human decomposition in the truck of Casey Anthony’s car.

4. The coincidence that chloroform was searched for on the Anthony’s home computer at a time that only Casey could be home, found in the trunk of Casey’s car, found within a syringe near Caylee’s decomposed body, and was a word contained in a MySpace posting made by one of Casey’s former boyfriends.

5. Casey was the only person that would have benefited in any way from Caylee’s death.

6. Caylee’s decomposed body still had duct tape across the mouth. This particular odd, rare brand of duct tape was linked to the Anthony home from a photograph of a "Caylee... missing child" poster that was posted using the same duct tape.

Of course, there are many more points of evidence from the trial, but just the above points are enough to alleviate any reasonable doubt in finding that Casey had, at the very least, some part in the death of her daughter. I can only assume that the jury in the Casey Anthony trial were people with little reasoning, common sense, and intelligence and/or were so concerned with being dismissed from this trial to make their personal plans that they failed to uphold their responsibilities as jurors. In any event, a miscarriage of justice took place today.

I would like to thank and commend Jeff Ashton and the rest of the state's team for a job well done. In this case, a not-guilty verdict in no way reflects upon the prosecution team, but rather reflects that there are fools born everyday to serve as jurors.

I also assume that Casey will follow-up her time in jail with a book, movie deal, and multiple network interviews, which could earn her million of dollars. I would implore everyone to boycott such and not to reward lying and misdeeds with riches.

A Buyer’s Market: Five Tips to Help First Time Homebuyers | Bizcovering

2011-04-26T01:44:00.000-07:00

A Buyer’s Market: Five Tips to Help First Time Homebuyers | Bizcovering

1. Get your finances in order.

Before you ever step foot in a prospective home, you should make sure that your credit is in order and that you’re able to secure a loan. Pre-approval for a mortgage amount will not only signal sellers that you’re a serious buyer and make them more apt to negotiate with you, it will also help you get an idea of what types of property you’ll be able to afford. Do crunch the numbers on your own and figure out how much mortgage you feel comfortable paying.

If you find that your credit isn’t ideal, then take a few months to pay down your debts before you start the pre-approval process with your lender. Never make big ticket purchases when your trying to get your credit in order, and remember that big ticket purchases and job changes are two areas that will ultimately affect your pre-approval since most lenders will do another check on these areas right before closing.

Read the other four tips: http://bizcovering.com/real-estate/a-buyers-market-five-tips-to-help-first-time-homebuyers/#ixzz1KcJZp75g

Know What Sport-related Injuries You’re At Risk For And Your Treatment Options

2011-04-24T00:28:00.000-07:00

As fans, Americans have long been lovers of sports of all sorts. However, with the growing attention on reducing obesity and its consequences and improving systemic health, more and more Americans are becoming participants in sports, not just idle fans.

The Sporting Goods Manufacturers Association released a sport-by-sport comparison on the growth of various sports. Running saw an almost 60% participation increase over the last decade. Yoga participation increased over 20% between last year and 2008. Amazingly, lacrosse participation increased by over 200% in the last decade.

While it's great news that more people are being active and improving their overall health through participating in sports, this participation is often accompanied by overuse and traumatic injuries. Muscles, tendons, ligaments, bursa, cartilage, and other soft tissues are much easier to injure than one might imagine. Simply doing too much, too fast in your chosen sport can place a stress on these structures that they simply weren’t designed to withstand. Of course, not adhering to the rules of the sport, not having the proper equipment, and not wearing the appropriate safety gear will substantially increase the risk of suffering a sport-related injury.

Sinew Therapeutics offers a great breakdown of the most common injuries for various sports like football, basketball, baseball, running, lacrosse, hiking, walking, weightlifting, wrestling, polo, and so forth. Participating in sports can combine fun with work for the body and make fitness an exciting prospect, but it’s still vital that you understand what injuries you may be at risk for and what you can do if you should suffer an overuse or traumatic injury.

With the cost of healthcare at an all time high, it’s also important to know what your options are for treatment of a sport-related injury. Do you know the difference between Western sports medicine and Eastern sports medicine? If not, Sinew Therapeutics can help you determine the difference, dispel some common myths, and give you expert advice on a variety of treatment options.

Super Pop and Drop

2011-03-16T11:30:00.000-07:00

Super Pop and Drop

Use power pieces and avoid getting crushed by the balls dropping from above.

Devilish Eggs | Notecook

2011-02-13T00:31:00.000-08:00

Devilish Eggs | Notecook

These little things are so good…they’re devilish!

Fda Approves Botox for Migraine Headache Use | Healthmad

2010-10-18T22:36:00.000-07:00

Fda Approves Botox for Migraine Headache Use | Healthmad

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Three Year Old Chinese Boy Astoundingly Weighs 10 Stones | Healthmad

2010-10-13T14:17:00.000-07:00

Three Year Old Chinese Boy Astoundingly Weighs 10 Stones | Healthmad

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Dying Child Maliciously Taunted by Adult Neighbors | Webupon

2010-10-13T14:11:00.000-07:00

Dying Child Maliciously Taunted by Adult Neighbors | Webupon

Among the taunting, the most disturbing include the couple posting images on Facebook of Kathleen’s mother in the arms of the Grim Reaper, Facebook images of Kathleen above crossbones, and driving past Kathleen’s home honking the horn from their “death decorated” truck containing a coffin in the back. Some experts are calling this the worst case of cyber-bullying they’ve ever seen.

Read more: http://webupon.com/web-talk/dying-child-maliciously-taunted-by-adult-neighbors/#ixzz12H9E22ky

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Scallops in Creole Vermouth Cream Sauce | Notecook

2010-10-12T22:52:00.000-07:00

Scallops in Creole Vermouth Cream Sauce | Notecook

This quick and easy recipe makes it look like you’ve slaved away…when really you haven’t. Makes four appetizer servings or two main course servings.

Read more: http://notecook.com/main-course/fish/scallops-in-creole-vermouth-cream-sauce/#ixzz12DPvSZ7r

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Crawfish Etouffee | Notecook

2010-10-12T22:34:00.000-07:00

Crawfish Etouffee | Notecook

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Stuffed Shrimp in Hollandaise Sauce | Notecook

2010-10-12T22:31:00.000-07:00

Stuffed Shrimp in Hollandaise Sauce | Notecook

When my favorite restaurant closed last year and I could no longer get their Stuffed Shrimp In Hollandaise Sauce, I had to come up with my own recipe. Hope everyone enjoys it.

Read more: http://notecook.com/main-course/fish/stuffed-shrimp-in-hollandaise-sauce/#ixzz12DKUTM5N

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Government Expected to Deny C. O. L. a. for Second Year in a Row | Socyberty

2010-10-10T23:17:00.000-07:00

Government Expected to Deny C. O. L. a. for Second Year in a Row

The trustees that oversee Social Security have used inflation data for thus far 2010 to project that Social Security recipients will not see COLA for 2011.

Read more: http://socyberty.com/government/government-expected-to-deny-c-o-l-a-for-second-year-in-a-row/#ixzz121oxTDUH

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Pumpkin Pancakes | Notecook

2010-10-09T14:04:00.000-07:00

Pumpkin Pancakes | Notecook

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New Study Shows Promise in Turning Off Food Allergies | Healthmad

2010-10-04T09:57:00.000-07:00

New Study Shows Promise in Turning Off Food Allergies | Healthmad

Food allergies account for over 300,000 American emergency room visits each year, with around 200 reported deaths.

About six to eight percent of U.S. children and four percent of adults suffer from food allergies In some, a food allergy can trigger a life-threatening anaphylaxis reaction. Currently, the only prevention for a food allergy is to avoid consumption and/or exposure the allergen source.

MarionCountyPRESS: New News Source For Marion County Mississippi

2010-10-03T14:46:00.000-07:00

Many of us in Marion County have missed the absence of the Marion County Informer since it closed a few months ago. I am happy to announce the arrival of MarionCountyPRESS.net. The online news site will be run by Mr. Dean Wade, owner of Pine Belt PRESS and former WDAM-TV reporter, news anchor, and weather anchor.

Like the MCI, Marion County PRESS will focus exclusively on local news, weather, politics, sports, and community events. Mrs. Chloe Oliver will be a writer and marketer for the Marion County Press. Local entities that wish to advertise their business or service on the site through print and/or video can contact Chloe by email . Mrs. Fran Ginn will continue her "Adventures in Good Eating" community column. I, for one, am excited to once again have a unique and engaging online news portal for Columbia, Mississippi.

Coconut Bread Pudding with Chocolate Drizzle | Notecook

2010-09-22T13:22:00.000-07:00

Coconut Bread Pudding with Chocolate Drizzle | Notecook

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Study Finds Increasing "Good Salt" Lowers Blood Pressure

2010-09-16T00:36:00.000-07:00

Study Finds Increasing "Good Salt" Lowers Blood Pressure

The research further confirmed that increasing “good” potassium salts have a role in maintaining blood pressure. Specifically, the study concluded that increasing potassium could help improve blood pressure, and that this favorable blood pressure effect would be equivalent to halving intake of “bad” sodium salts.

Read more: http://healthmad.com/nutrition/study-finds-increasing-good-salt-lowers-blood-pressure/#ixzz0zfxgdoJN

Studies Claim That One Million Children Misdiagnosed with Attention Deficit Hyperactivity Disorder | HealthMad

2010-08-17T10:40:00.000-07:00

Studies Claim That One Million Children Misdiagnosed with Attention Deficit Hyperactivity Disorder | HealthMad

Despite steadily increasing rates of ADHD diagnosis and treatment, many believe that it is still under-diagnosed. On the other hand, the research above is arguing that it is overly and/or misdiagnosed. According to the study by Todd Elder of Michigan State University, there’s almost 1 million U.S. children that are possibly misdiagnosed with ADHD. His research relies heavily on the age and maturity level of each individual child.

Is Steven Slater a Hero or Idiot?

2010-08-12T10:11:00.000-07:00

I vote idiot. He could have easily killed ground workers by deploying the slide. There are better ways to deal with unruly passengers. Passengers that do not listen to airline attendant instructions can actually be fined $25,000- that would have been more effective than possibly killing and injuring ground workers with a slide.

Musee Picasso's At Chateau Grimaldi Archaeological Site

2010-08-11T23:26:00.000-07:00

A bit of history via Lauren Axelrod:

The Chateau Grimaldi, constructed during the 12th century, acted as a fortress and was raised on the foundations of what was once the Greek town of Antipolis. The Chateau Grimaldi later became the residence of the Bishops of Antibes and the studio of famous artist Pablo Picasso.

Around 1383, Luc and Marc Grimaldi from Monaco, crossbowmen in the army of Queen Jeanne of Navarre, were given Chateau Grimaldi, as well as the land surrounding the fortress as a private estate. The Chateau Grimaldi remained a stronghold of the Grimaldi family until 1608. At that time, Henri VI purchased the town, ... From: Musee Picasso's At Chateau Grimaldi Archaeological Site

Top 12 Ridiculous Baby Products

2010-08-11T05:19:00.000-07:00

A list of the top 12 ridiculous, useless, and absurd baby products.

Potty Mitts

Three words- wash those hands. Parents are becoming so lazy. It is easier to mitt a child up to avoid germs, then to actually teach the child hand washing skills. Just wash your kids hands after trips to the bathroom and save some money and time.

Find the complete list of the 12 most ridiculous baby products: http://purpleslinky.com/humor/top-12-ridiculous-baby-products/#ixzz0wIbgAlyw

The Dangers of Colon Cleansing | HealthMad

2010-08-09T10:26:00.000-07:00

The Dangers of Colon Cleansing | HealthMad

In the late 90’s the idea slowly started to resurface. With celebrity usage, colon cleansing has gained popularity once again. However, you should keep in mind that the celebrity endorsements and manufacturer claims do not require FDA verification or supporting evidence.Read the dangers associated with colon cleansing!

Illegal Immigrant Kills Nun After Evading Deportation Multiple Times | Newsflavor

2010-08-07T11:08:00.000-07:00

Illegal Immigrant Kills Nun After Evading Deportation Multiple Times | Newsflavor

Twenty-three-year-old Carlos Martinelly Montano, a Bolivian native, was arrested at least twice on charges of drunk driving. According to Virginia police, he has also had multiple arrests for other traffic related offenses. Montano had been turned over to Immigration and Customs Enforcement (ICE) on at least one of the offenses. Virginia authorities expected Montano to be deported. Montano was instead released back into the community, where he killed a nun while driving drunk.

What You Don't Know About Dietary Supplements

2010-08-05T20:34:00.000-07:00

According to Consumer Reports, many fashionable dietary supplements claiming to be natural actually contain ingredients that can cause cancer and heart, liver, and kidney damage. Manufacturers and retailers sell and promote the products without hesitation because Americans are spending billions of dollars yearly on them. The Nutrition Business Journal claims that the “supplement market” was worth $26.7 billion dollars in 2009.
There are over 54,000 dietary supplements in the Natural Medicines Comprehensive Database. Yet, only a third have any scientifically supported evidence related to a safety level and effectiveness. Supplements coming from factories in China are not even inspected by the FDA.

Dog Saves His Owner’s Life by Chewing Off His Toe | The Real Owner

2010-08-04T23:33:00.000-07:00

Dog Saves His Owner’s Life by Chewing Off His Toe | The Real Owner

New Dental Gel for Cavities Could Retire The Dental Drill and Filling Forever | HealthMad

2010-07-29T10:41:00.000-07:00

New Dental Gel for Cavities Could Retire The Dental Drill and Filling Forever | HealthMad

A gel has been developed that can help a decayed tooth return to it’s original healthy state in as little as four weeks. This could retire the dental drill and dental fillings. It would be of great value to children with handicaps, as they would no longer have to be put under anesthesia to have cavities filled.

Mom Cruelly Murders Her Autistic Children Because They Were Not Normal | Socyberty

2010-07-22T07:52:00.000-07:00

Mom Cruelly Murders Her Autistic Children Because They Were Not Normal | Socyberty

Saiqa Akhter is charged with capital murder after strangling to death her two children- Zain, 6-year-old, and Faraal, two- year- old. The 911 tape is nothing short of sickening as Saiqa tell the operator without a shred of emotion how and why she killed her children. Saiqa is Pakistani born and the 911 operator had her repeat much of what she was saying over and over because of her heavy dialect. Listen to the tape and read the story: http://socyberty.com/crime/mom-cruelly-murders-her-autistic-children-because-they-were-not-normal/#ixzz0uQGI5Dr7

Baby Babble Used as Early Detection for Autism | HealthMad

2010-07-20T10:53:00.000-07:00

Baby Babble Used as Early Detection for Autism | HealthMad

Medical experts all agree that early diagnosis is crucial, if not essential, to maximize therapeutic improvement in children with autism. The theory being that the sooner intensive therapy is started, the more improvement is possible.

So, you can imagine the benefits that being able to distinguish early babble of an autistic child vs. a non-effected child would be. Currently, autism is usually diagnosed after a long subjective observation session by a medical specialist watching for and keeping count of the “characteristics of autism” presented.

Imagine if therapy could begin before the signs and symptoms of autism are even present! That is exactly what a new research study is focusing on. Researchers are studying those nonsense syllables that babies make as they babble in an effort to find an early screening tool. Science has proven that autistic children typically show early problems in speech, but that fact is not reliable because of the variety in how toddlers distort their babbling….in comes a computer program.

The study is being published today in the “Proceedings of the National Academy of Sciences.” I think that readers should be aware that a couple of the authors were paid consultants for the company that developed the recorder and computer program. However, the researchers disclosed this information, and claim that they stopped taking the fees by the time the research was written.

Read the research here-http://healthmad.com/mental-health/baby-babble-used-as-early-detection-for-autism/

Three Percent Survival Rate for Disease You Get While Swimming | HealthMad

2010-07-18T14:02:00.000-07:00

Three Percent Survival Rate for Disease You Get While Swimming | HealthMad

Most deaths associated with swimming are due to drowning. However, there is a hidden danger that few are aware of- Naegleria fowleri

Doctor Plugs Baby's Brain with Glue

2010-07-16T18:55:00.000-07:00

Doctor Plugs Baby's Brain with Glue

It is no doubt that the field of medicine has come a long way. Not long ago things like bioprosthetic valve’s and laser surgery to remove kidney stones would have been a foreign thought for most. Yet, with all the astounding technology we have available, something as simple as glue still has an invaluable place in medicine.

Read about Joely Finkelstein and how Dr. Alejandro Berenstein saved her life with something as simple as medical glue.

Welcome News For Tourette Syndrome Kids: Non-pharmaceutical Treatment With Hypnosis

2010-07-13T22:24:00.000-07:00

I encourage you to watch this YouTube Video about Tourette Syndrome

An interesting Tourette Syndrome study was published in the July issue of the Journal of Development and Behavioral Pediatrics.

Tourette syndrome is an inherited neuropsychiatric disorder that appears in childhood. It is characterized by multiple physical and vocal tics. It is estimated that as many as 10 per 1,000 people have Tourette syndrome. The exact cause of Tourette syndrome is unknown, but genetic and environmental factors are known to have a role. Sadly, there is no universal medication to control the many variations, degrees, and manifestations of the Tourette tics. The medications that are available are used sparingly and in the lowest dose possible, as the medications’ adverse effects are often more disturbing than the Tourette symptoms.

As one can imagine, children with Tourette syndrome are usually socially awkward, teased, and are viewed as bizarre by their peers. So, the study titled- "Children and Teens With Tourette Syndrome Find Relief With Self-Hypnosis," is welcoming news for those with Tourette Syndrome.

The study was of 33 children and adolescents with Tourette Syndrome. It found supporting evidence that self-hypnosis reduced their symptoms and improved their quality of life.

Each participant watched a video and was given self-hypnosis training in individual sessions. They were then assigned to practice the technique three times a day and answer questions about their tics and how they felt experiencing them.

Seventy-nine percent of the research participants achieved enough tic control improvement to report that they were personally satisfied with the technique. According to one of the authors of the study, Dr. Lazarus, self-hypnosis helped the patients experience a state of mind that combined relaxation with concentration on a desired focus point as other thoughts and feelings fade into the background.

Read the study here.

Nanotechnology Dressing Will Fight Infection Before You Even Know There is an Infection | Scienceray

2010-07-09T10:57:00.000-07:00

Nanotechnology Dressing Will Fight Infection Before You Even Know There is an Infection | Scienceray

Scientists at the University of Bath and the burns team at the Southwest UK Pediatric Burns Center in Bristol are working with international teams to create an advanced wound dressing that will detect and treat infections from the moment they arise. The prototype will take around four years, but the wait will be well worth it.

Gene Therapy Re-launched For Bubble Boy Syndrome

2010-07-07T11:02:00.000-07:00

source

You might remember the made-for-TV movie, “The Boy in the Plastic Bubble,” starring John Travolta. The movie was inspired by real life SCID (also called bubble boy syndrome) sufferers- David Vetter and Ted DeVita. The genetic condition leaves the child unable to fight off germs.

The last study about SCID and gene therapy was seven years ago in Europe. The two trials involved a total of 20 children. It was stopped after two participants were diagnosed with leukemia. Three others eventually developed leukemia as well. The survivors were cured of SCID-X1, but the European episode prompted the U.S. FDA to put certain gene-therapy studies on hold.

Finally, researchers believe that they have removed the treatment feature thought to have caused the leukemia, and we have a new gene-therapy trial for SCID in the U.S. going forward. Five other international sites will also participate. The new study is sponsored by investigators at Children's Hospital Boston. Scientists plan to enroll 20 boys with SCID-X1. Scientists will try to correct the defective or non-functioning gene in SCID by delivering a “vector,” a virus genetically altered to contain human DNA. In theory, the normal gene with the vector will begin producing a protein that has been missing or not working. Thus, curing the disease.

Read more about SCID and the new study:

Wall Street Journal- Study Shows Hope For Gene Therapy

Severe Combined Immune Deficiency - Types And Severity Of Immunodeficiency Diseases, Scid, Gene Therapy

Science Daily- Why Gene Therapy Caused Leukemia in Some Boy in the Bubble Syndrome Patients

Children's Hospital Boston- International Gene Therapy Trial Launched at Children's Hospital Boston for "Bubble Boy" Syndrome

Breakthrough Cord Blood Infusion Reverses Cerebral Palsy in Chloe Levine

2010-07-07T09:13:00.000-07:00

Breakthrough Cord Blood Infusion Reverses Cerebral Palsy in Chloe Levine

Bone marrow stem cells have been being used in medicine for the last forty years with much success. It has been seen in the treatment of blood diseases, cancer, immune disorders, etc. In these disease processes, stem cells serve as a sort of jumper cable for the recipients immune system. However, stem cells taken from children and adults have already been exposed to things like viruses, chemicals, and toxins…which can damage or alter the cell structure and function. In comes umbilical cord blood.

Cord blood cells are taken at birth, before the infant is exposed to any environmental factors. It is also advantageous because the cells are younger and smarter. Once the cord blood is re-infused into the person, the cells migrate to wherever the person is injured and immediately go to work to help repair any damaged cells or tissue.

The umbilical cord blood collection process is simple and painless for the infant. A syringe is placed in the umbilical cord that runs from mother to infant. The blood is then sent to whatever blood bank the parent has opted to use. Sadly, the collection and storage cost is still out of reach for many families.

Chloe Levine, a child with cerebral palsy, was lucky that her parents were able to store her cord blood. See her story: http://telewatcher.com/telewatching/breakthrough-cord-blood-infusion-reverses-cerebral-palsy-in-chloe-levine/#ixzz0t0uOcE1G

B L T Pasta | Notecook

2010-07-06T07:06:00.000-07:00

B L T Pasta | Notecook

I love B (bacon) L (lettuce) T (tomato) sandwiches, but they are not too easy to transport. So, here is a BLT pasta spin that is perfect for a picnic or bring-to-work lunch.

Are Americans treated...overtreated....to death?

2010-07-05T19:46:00.000-07:00

If your house was on fire would you try to put it out with everything you could…or would you throw your hands up and say fire is part of nature?
I read an article in the Washington Post titled- “Americans are treated, and overtreated, to death,” which I thought would be about the way doctors subject patients to tests, procedures, etc.. that they do not necessarily need in an effort to not be sued. Sadly, the article was about something altogether different.

The article starts out by describing how Rosaria Vandenberg had endured two surgeries, chemotherapy, and radiation for an incurable brain tumor. After months of tubes and machines, Rosaria went home to spend her final moments with her 2-year-old daughter. She died the next day. The family says that those moments with her daughter could have been longer if only they would have known to talk about alternatives to the aggressive treatment Rosaria underwent. Rosaria’s sister-in-law, Alexandra Drane said, “We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her.”

Several alike stories were included by families of those that lost their life to terminal illness. These families are hurting. They have lost a loved one and feel like tubes and machines robbed them of their “goodbye.” However, each person chooses their path; I seriously doubt that any one of these patients were told that they MUST undergo any of the treatments.

The article goes on to say that 80% of patients say that they want to avoid hospitalization and intensive care when dying. However, that number is not representative of what is actually happening, as the article claims that hospitalizations during the last six months of life has risen from 1,302 per 1,000 Medicare recipients in 1996 to 1,441 in 2005. So, it really does not matter what people say…it matters what they do!

It seemed almost like the writer was putting a price on life after he made several references to things like…the last two years of chronic illness treatment “gobbles up” one-third of all Medicare dollars and people are “racking up bills that have made medical care a leading cause of bankruptcies.”

Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center, backs up the articles theme by claiming patients are actually sicker as they die. He says that families may push for treatment, but "there are worse things than having someone you love die." Humm, I can think of worse things than my computer blowing up in my face, but that does not mean that I am not going to do everything possible to keep it from happening.

Another point the article tried to drive home was blame- many doctors practice “exhaustive medicine” even when they know that the illness is incurable and many patients don’t want to give up. Dr. Porter Storey, an executive vice president of a hospice group, says that instead of fighting, we should be helping patients and families accept death as an inevitable part of life. Ahhh…yeah death is inevitable, but fighting for life is the root from which current lifesaving medications and procedures were invented. Everything was incurable until a cure was fought for, or at least sought after. For example, before the invention of insulin in the 1920‘s, many diabetics faced a slow and certain death. Imagine if Dr. Frederick Banting had shared the faulty logic that every medical happening is just part of an inevitable path to death and not fought to provide a life extender via insulin!

Finally, the article pointed out that patients and their families ultimately make their own end of life path. In my opinion, it is it kind of hard to acknowledge that this is a personal decision all while bashing the decision that the majority of terminally ill patients opt for. A person has every right to seek out every option they have when they are faced with a terminal illness, no matter how remote the chance of success might be, no matter how expensive it is, no matter what their family thinks they should do. They also have the right to decline treatment. Whatever they choose to do, we should not judge, but rather support.

Education: What Does It Mean For Your Child

2010-07-01T23:07:00.000-07:00

The PACER Center is a Minnesota training and information center funded by the U. S. Department of Education Office of Special Education (n.d., http://www.pacer.org/) writes an article for LD online explaining to lay people the evaluation process for special education. The article gives brief descriptions of measurement tools and the function of individual assessments. In addition, questions such as, “What questions should I consider when evaluation or reevaluation is proposed?” and” What if I disagree with the school’s evaluation? (p.5)” are discussed. To illustra... From: Education: What Does It Mean For Your Child

Chris, the author of this article, is a dear friend that has first hand experience in dealing with special needs children in the education system. His articles are always informative, factual, detailed, and easy for the layman to comprehend.

Read the rest of his article, "Education: What Does It Mean For Your Child."

Bailey’s Irish Cream Cheesecake | Notecook

2010-06-29T10:46:00.000-07:00

Bailey’s Irish Cream Cheesecake | Notecook

Bailey’s Irish Cream plus cheesecake…if your mouth is not watering, then I don’t know if you are of the human gene pool!

Get the recipe: http://notecook.com/desserts/cakes/baileys-irish-cream-cheesecake/#ixzz0sGVvDeqA

A Global Call To Support Parent's of Special Needs Children

2010-06-28T22:06:00.000-07:00

I realize that I write a lot about the resources available (or lack there of) for special needs children and their families. However, I have long thought that one of the greatest challenges for the parent(s) of handicapped children is lack of resources, lack of available care and education, and lack of global support. These take a much heavier mental and physical toll on the parent than the child‘s actual disability ever thought of.

A new study by the Texas A&M University Center on Disability and Development seems to give statistical data to my personal opinion. The study was published in Rehabilitation Psychology.

Seven Texas based focus groups were conducted with 40 parents of children with disabilities. The collected data was coded into themes. The four significant themes that serve as barriers to a positive parent wellbeing were:

1. Access to information and services
2. Financial barriers
3. School and community inclusion
4. Family support

Read more about the details of the study here.

Abortion Fetuses Could be Used for Adult Organ Donation | Socyberty

2010-06-28T06:50:00.000-07:00

Abortion Fetuses Could be Used for Adult Organ Donation | Socyberty

I read an article on MSNBC about fetuses not being able to feel pain until 24 weeks gestation. The article was scant on evidence to support the new research “finding.” So, I went on a search to find supporting evidence from both sides of the “when do fetuses feel pain” debate. In the process, I came across an article from 2009 that redirected my attention away from fetal pain. But, no fear I landed smack into the exploitation of fetuses.

Oxygen Dependent Woman Dies Because Power Company Terminated Her Electricity | Newsflavor

2010-06-28T06:42:00.000-07:00

Oxygen Dependent Woman Dies Because Power Company Terminated Her Electricity

Kay Phaneuf, 53-years-old, died this past Thursday. She wasn’t a newsworthy celebrity, she didn’t die from some rare newsworthy disease, and didn’t die from some newsworthy freak accident. She died because of a failed policy. A failed policy that left her oxygen machine without the electricity it needed to operate.

Low Vitamin D Levels Linked to Severe Asthma Attacks | Healthmad

2010-06-25T10:03:00.000-07:00

Low Vitamin D Levels Linked to Severe Asthma Attacks | Healthmad

Recalls on Children and Infant Products

2010-06-25T08:53:00.000-07:00

It seems like every week there is some sort of recall on children's products.

Here, we saw the bacteria laced Tylenol brand recall.

Here, we saw more than 2 million Evenflo, Delta Enterprises Corp., Child Craft, Jardine Enterprises, LaJobi, Million Dollar Baby and Simmons Juvenile Products recalled after concerns that babies could suffocate, become trapped, or fall out of the baby beds.

Now, we can add infant carriers, onesies, rompers, and belts to the list of recently recalled children's products. The CYBEX 2.GO infant carrier has a buckle that can break and pose a risk of falls. The Target belts have lead in them. The onesies and rompers by Holtrop & McIndoo LLC

Resources For Families With Special Needs Children

2010-06-24T21:16:00.000-07:00

If you are the parent of a special needs child and feel completely overwhelmed by the medical and fiscal issues, have no fear…you are not alone. Most parent’s with special needs children are not millionaires. We are low income and middle class folks that don’t really have spare money sitting around for things like a $30,000 muscle biopsy.

My personal situation was comfortable before Kaitlynn was born. I worked as an ADON for a nursing home and my husband was a maintenance supervisor for a prison. We were not rich by any means, but we were comfortable. We saved around $40,000 before getting pregnant, so that I could take a year off with our future baby. After Kaitlynn was born and her medical issues became apparent, I resigned from my job. It only took 6 months for her medical expenses to devour our savings. We not only now faced monthly bills that we obligated ourselves to when we had two incomes, but a new steady stream of medical bills and expenses to travel to all these doctors.

It was a humbling and life changing experience to say the least. I learned a frugal nature that I never would’ve thought existed within me; salvage stores, consignment shops, and discount stores became my new best friend. However, frugality was still not enough to stretch pennies into hundred dollar bills.

I swallowed my pride quickly when it came to the wellbeing of my child and getting her whatever she needed. I spent hours researching anyone and anything that would provide help. So, don’t give up on getting your child the help that they need because you hit a financial brick wall. There are many resources that specifically help families with special needs children. Here are six resources to get you started.

      Angel Flight

This private charter plane will transport ONE parent and handicapped or terminally ill child to doctor appointments, surgeries, etc for FREE. The plane is usually small and the trip is donated by the pilot or owner. There is a waiting list. So, if you need this service, it is best to apply as soon as you know the date you need the transportation.

      SSI Supplemental Security Income

If your child has certain disabling conditions you may be eligible for SSI. This is a program through the Social Security office. It generally takes several months for approval, and you may get denied several times, but just keep applying. You may be eligible immediately (while approval is pending) if your child was born with certain diseases. There is a specific list of these diseases at the SSI web site. Keep in mind that SSI approval is dependent upon income and assets. The specific allowed amounts of assets and income will differ per state. Generally, your vehicle, life insurance, and primary residence is not considered an asset. However, savings accounts, checking accounts, other property, etc are. When the child is approved for SSI, they are also automatically approved for Medicaid.

      CHIPS (Children's Health Insurance Program) and Disabled Child Living at Home Medicaid

If you are not approved for SSI and/or Medicaid, then you may still be eligible for the “Disabled Child Living at Home” portion of Medicaid. This is a Medicaid program that DOES NOT consider income. This program only looks at the medical eligibility. The SCHIPS program does consider income as a factor, but the income cap is much higher than with Medicaid. So, both of these are viable options for middle class families stuck between not meeting income requirements for Medicaid, but not being able to afford private insurance.

      Shriners Hospitals For Children

Shriners will provide free care for children with certain medical conditions. These hospitals are run by the Shriners organization. You must be recommended or sponsored by a Shriners member. Contact your local chapter for an appointment with a member. It is not a difficult process. There are 22 different hospital locations. The Shriners will provide free transportation to and from medical appointment that are out of state These Hospitals are limited in the care they provide. Mostly, they specialize in orthopedic conditions, burns, cleft palate, & spinal cord injuries.

      Ronald McDonald House

If you must travel afar to doctor appointments, then check to see if there is a Ronald McDonald house in the area. You will have a private room here, but the bathrooms and central areas are shared. They have several locations. Again, this is one of those things you want to contact as soon as you know the date of your stay.

    First Steps

This is a program for developmentally delayed children. It is provided through the local health dept. The services that they offer depend greatly on the community you live in. Some offer physical therapy, occupational therapy, speech therapy, and special educational instructors…while others may offer different combinations of the above disciplines. It is a home based service and generally each needed discipline will see your child once a week. You may custom build your services based on what you want and what they have available. This program is for children birth through 3 yrs of age. The therapist will help you identify and find a resource to get any equipment you need for your child. Call your local Health Dept for more information.

Adult and Baby Wet Wipes Can Cause Severe Allergic Reaction | Healthmad

2010-06-22T11:55:00.000-07:00

Adult and Baby Wet Wipes Can Cause Severe Allergic Reaction | Healthmad

Anyone with a baby can tell you that various brands of baby wipes can be skin irritating and result in rashes for some children. As a nurse, I watched some of my elderly and pediatric patients develop severe genital and anal irritations, that appeared to worsen with each cleaning. Logical deduction told me that the wipes were the likely culprit. Sure enough, 99% of the time the patient would improve when the wet wipe was discontinued and good old soap and water was reintroduced.

Handicapped children and adults are at an even higher risk for developing skin irritations, breakdowns, and sores. The last thing they need is an irritating wipe on top of it.

Up until now, it was unknown exactly what caused wet wipes and baby wipes to be skin irritating. Researchers have finally discovered one of the main culprits. Read about the discovery, patient cases, and what I recommend doing to solve the problem here: http://healthmad.com/healthcare-industry/adult-and-baby-wet-wipes-can-cause-severe-allergic-reaction/#ixzz0rbqGFoRA

BTW: if you want want to use your writing skills, desire to advocate, etc.. to make some money, then check out Triond.

Blogdirectory.me

2010-06-22T00:21:00.000-07:00

Submit your blog to blogdirectory.me to share your blog with the world! It's easy- just give the url to your blog, label it, describe it, and post a simple code to your blog like this:

Epidermolysis bullosa (EB)

2010-06-20T22:31:00.000-07:00

Epidermolysis bullosa (EB) is a actually a complex group of genetic conditions that results in very fragile and easy to blister skin. The skin of these patients is so delicate that it is often compared to the fragility of a butterfly wing.

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The slightest bit of friction, such as a gentle scratch, or injury results in blisters and skin erosions. These blisters are painful and under the constant attack of infection. Dystrophic epidermolysis bullosa (DEB) is one of the major forms of epidermolysis bullosa. DEB is further classified into three major types. The same gene is mutated, but the severity and specific symptoms vary widely from type and from individual to individual.

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1. Autosomal recessive dystrophic epidermolysis bullosa or Hallopeau-Siemens type (RDEB-HS)
This is the most severe type. Infants are typically born with areas of missing skin and widespread blistering just from the trauma of normal birth. The blistering can affect the entire inner and outer body…from mucous membranes in the mouth and lining of the digestive tract to the toes and ears.
As these blisters heal, they do not heal as you or I would. Instead, the heal with scar tissue. The scar tissue creates a whole new set of problems. For example, as the scar tissue builds in the esophagus, it can make it very difficult to swallow food. Progressive scarring on the outer body can cause fusion of fingers and toes, creating a web like or nub like appearance; loss of fingernails and toenails; joint contractures, which can restrict movement; etc.. Once the child reaches puberty, there is also a high risk of developing the squamous cell carcinoma, an aggressive and life- threatening type of cancer.

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2. Non-Hallopeau-Siemens type (non-HS RDEB)

This type is usually less severe than RDEB-HS. There are more subtypes under Non-Hallopeau-Siemens type (non-HS RDEB), but for a general discussion, mild cases will have blistering that is limited to hands, feet, knees, and elbows in mild cases. More severe cases can have widespread blistering akin to RDEB-HS. The same malformation of toenails and fingernails is present. Scaring is usually involved. However, the scarring is usually not to the degree as it is in RDEB-HS.

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3. Autosomal dominant type (DDEB)

This is the milder of the types. Blistering is usually confined to hands, feet, knees, and elbows. There is some scarring as the blisters heal, but it is much less severe than the other types. Most of those affected will also eventually lose malformed fingernails and toenails.

Prevalence

As a whole, there are about 6.5 million newborns in the U.S. with dystrophic epidermolysis bullosa, with the severe autosomal recessive forms affecting fewer than 1 per million newborns.

Treatment

Dr. Alfred Lane best discusses future treatment here. Currently there is not a cure.

What Causes DEB?

DEB is caused by mutations in the COL7A1 gene, the gene responsible for providing instructions for making a protein used to assemble type VII collagen. This particular collagen is a major component in the anchoring fibrils that anchor the epidermis (top layer of skin) to the underlying dermis. The dermis and epidermis in a normal body is much like two pieces of Velcro stuck together. As the skin experiences friction, the skin stays anchored together. But, in a person with DEB, the Velcro fibers are absent. So, it has nothing to keep it stuck together. The skin layers slip apart with friction or trauma, causing blisters and wounds to form.

Well Known Cases

Jonny Kennedy, is one of the most well known suffers of DEB. He was the subject of a documentary called, “The Boy Whose Skin Fell Off.” Jonny died from the skin cancer associated with DEB. The documentary captured the final moments of his life.

I recently watched a National Geographic program about 13-year-old Garrett Spaulding. The story touched me deeply, as many do not realize that EB is not just about the disfiguring aspect, but this disease causes unimaginable pain. I literally cried as I watched Garrett’s mother tackle giving her son a five hour dressing change. His entire body is literally mummified with gauze, antibiotic creams, and net wrapping. See Garretts' story on the National Geographic show, Extraordinary Humans.

15 Natural Treatments for Mosquito Bites

2010-06-19T15:33:00.001-07:00

15 Natural Treatments for Mosquito Bites

If you have ever lived in the south, then you know the summer nights, as beautiful as they may be, also come with one very annoying pest- the female mosquito.

Your smell, heat, body odor, perspiration, and even exhaled breath all attract this winged pest. She makes an often undetected landing; before you know it, she has stuck her thin proboscis into your skin and began her meal.
Before we look at natural treatment options for mosquito bites, there are a few signs and symptoms that should not be attributed to a normal mosquito bite. Mosquito’s carry many diseases such as, West Nile Virus, that are passed from person to person when they bite you. If you feel nauseated, faint, experience headaches, fever, chills, muscle aches, or have trouble breathing after a mosquito bite…it may be a sign of serious reaction or passage of disease. You should go to the emergency room or primary caregiver if you experience any of the above symptoms.

Read the 15 natural treatments for mosquito bites here- http://healthmad.com/health/15-natural-treatments-for-mosquito-bites/#ixzz0rLBxfLpi

How To Find Clinical Trials

2010-06-15T21:19:00.000-07:00

Clinical trials are essentially human biomedical or health-related research studies that follow a pre-defined protocol. These trials can be interventional (addresses whether experimental treatments or new ways of using known therapies are safe and effective under controlled environment) and observational studies (address health issues in large groups of people or populations in natural settings.)

By becoming part of a clinical trial, you not only proactively participate in your own health care and gain early access to cutting edge treatment, you also contribute to the treatment and research of the disease you are afflicted with.

I get questions all the time about clinical trials. Many parents of special needs children are overwhelmed when it comes to finding a clinical trial that is disease, age, and location appropriate. I watch the clinical trial scene religiously for an idiopathic/mitochondrial disease clinical trial that fits my daughter. The two websites that I find easiest to use, reliable, and always current are:

CenterWatch

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This site has a little of everything. It is an excellent source to find news, directories, analysis, and listings of clinical research. If you are unfamiliar with clinical trials, the site breaks down the process in an easy to understand manner. You can search clinical trials and find out the who, what, when, where, and how of each trial; search for drug information; review already completed trials; and sign up for e-mail alerts about specific clinical trials. Start your search at CenterWatch.

ClinicalTrials.gov

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This site includes current information on federally and privately supported clinical trials for a wide range of diseases and conditions. Search by topic, keyword, disease, location, etc.. Studies are updated daily. At the moment, there are 91,384 trials listed on the site. ClinicalTrials.gov was developed by The National Institutes of Health (NIH) and The Food and Drug Administration (FDA…so users can rest assured that the listings are all legit. Start your search at ClinicalTrials.gov.

If you have any questions, feel free to leave them in the comment section:)

FDA Will Hold Public Hearing on Review and Regulation of Products for Rare Diseases

2010-06-15T20:11:00.000-07:00

On June 29th and June 30th, 2010 The Food and drug Administration (FDA) will hold a public hearing on the regulation of drugs, biologics, and devices for the treatment and diagnosis of rare diseases. The hearing will be held on both dates from 9 a.m. to 5 p.m. at 10903 New Hampshire Avenue, Building 31, Room 1503, Silver Spring, Maryland. There is not a charge to attend, but seating will be on a first-come basis.

The FDA is seeking to acquire input from healthcare providers, academic researchers, patients, family of patients, patient advocates, pharmaceutical industry, and the healthcare industry to help carve the FDA’s future path related to rare diseases. All of these groups will be given an opportunity to relate their experience, concerns , and suggestions related to the way the FDA regulates the scientific evaluation, marketing authorization, surveillance, etc.. of products for rare diseases.

The National Organization for Rare Disorders (NORD), one of the leading organizations dedicated to helping people with rare "orphan" diseases, announced that they will have a representative to speak at the meeting. If you would like to speak or submit a written comment via NORD, you can contact Diane Dorman @ ddorman@rarediseases.org

Otherwise, you can contact The FDA for questions about how to make an oral presentation or written submission here- Paras M. Patel, Food and Drug Administration, 10903 New Hampshire Avenue, Building 32, Room 5271, Silver Spring, MD 20993-0002; telephone: 301 796-8660; fax: 301 847 8621; OPDAR@fda.hhs.gov. You must register if you want to be heard! If you just want to attend, then you do not have to register.

Rare Disease and Orphan Drug Profit Gouging

2010-06-14T12:52:00.000-07:00

There are millions of people that suffer from obscure, unknown, and rare diseases. Together, these people make up a substantial portion of the population, but alone they are not an appealing business venture when it comes to discovering and marketing pharmaceutical treatments. For example there are approximately 8,000 different rare diseases. However, for a disease to be classified as a “rare disease,” it must afflict less than 200,000 people.

This is what we call an orphan drug (developed specifically to treat a rare medical condition) and orphan disease ( so rare, obscure, or unknown that the disease does not have any viable treatment.) The economics of drug research, development, and marketing for orphan disease treatment is simply not profitable for the industry because so few are in demand of the product that would be created for each disease.

In comes The Orphan Drug Act (ODA) of January 1983. The ODA was specifically designed to encourage pharmaceutical companies to develop drugs for those diseases that have a small market. Under the ODA a company that develops an orphan drug for a rare disease may sell it for seven years without any competition. In other words, they will have a monopoly on the drug for seven years. The company may also receive clinical trial incentives through grants to defray the cost of clinical research; tax credits worth up to 50% of the cost of clinical trials; a waiver of the Prescription Drug User Fee Act filing fees, that was worth an estimated 1 million per application in 2008; regulatory assistance; and expedited review processes.

The ODA also removed some of the red tape that held orphan drugs from development. All drugs focus on the pharmacokinetics, dosing, stability, safety and efficacy of a drug. However, the ODA acknowledges that the process for clinical trials of orphan drugs have special factors. For example, it might not be possible to test 1,000 patients for a phase III clinical trial of an orphan drug, as there may not even be that many people affected by the disease.

The ODA success is clear. In the decade before the ODA was enacted, less than ten such products for rare diseases saw the market. From 1983 to 2009, an estimated 2,116 drugs received an orphan drug designation by the Office of Orphan Products Development (OOPD), 353 actually being approved for the market. The Orphan Drug Act of 1983 has clearly helped to improve the quality of life for many afflicted with rare and obscure diseases by making orphan drug research, development and marketing economically feasible and profitable for may companies.

However, there is still one major problem associated with orphan drugs… patient affordability. While the ODA made it fiscally attractive for the companies putting out orphan drugs, that does not mean that these companies are ethically concerned with ensuring patients get the medication at an affordable price. In knowing that they have a monopoly on a drug that is the only treatment option, they know that the patient will pay whatever they set the price at. The ODA incentives already make orphan drugs a profitable venture for pharmaceutical companies. Yet, pharmaceutical companies are not happy with some profit, they want extraordinary profit. The prices of some of these orphan drugs per year are more than most people spend on a home.

Take Botulism Immune Globulin (BIG) for treatment of infant botulism for example. Botulism Immune Globulin cost 10.6 million dollars to bring from discovery to market. The FDA OOPD contributed $3.7 million of that cost. Yet, Baby-BIG cost $45,300 per infant/per dose. Copaxone, for relapsing-remitting multiple sclerosis, cost $1,771 per injection. In 2007, Teva Pharmaceuticals made $0.303 billion dollars from the sell of Copaxone. Humira, for JV idiopathic arthritis cost $1,391 for a month supply. Abbott made $0.462 billion dollars of Humira in 2007. The list goes on and on, but you get the point.

In 1990, Congress tried to amend the ODA to address some of the abuses. The bill would have reviewed the sale record of orphan drugs in the 5th year of marketing, determined if there was still limited marketing value, and if not- it would lose two years of marketing exclusivity. The amendment passed Congress, but was sadly vetoed by President Bush.

The ODA is doing a great service to those with rare and obscure diseases. No one is asking pharmaceutical companies to trade profitability for philanthropy, but there should be some standardized safety net to prevent profit gouging of orphan drugs.

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New Research In Treatment for Spinal Muscle Atrophy (SMA)

2010-06-11T23:43:00.000-07:00

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Science Translation Medicine has just published groundbreaking research on spinal muscle atrophy (SMA.)

SMA is a set of inherited muscle diseases that cause muscle to continuously degenerate and weaken. The disease requires extensive and ongoing medical care. The disease process usually ends with death. In fact, SMA is one of the most common genetic causes of death in childhood. Sadly, there is no known cure or effective treatment.

The research by University of Sheffield demonstrated a novel gene transfer system that has the promise of efficient therapeutic treatment for SMA patients. I will let you read the research process below, but the approach has the possibility of establishing gene therapy with the use of just a single injection.

It is important to note that test was conducted using animals, but these findings undoubtedly put science that much closer to actual gene therapy treatments for SMA patients.

Research in depth:

New therapy offers hope to Spinal Muscular Atrophy (SMA) patients

Systemic Delivery of scAAV9 Expressing SMN Prolongs Survival in a Model of Spinal Muscular Atrophy

New Novel Gene Treatment For Spinal Muscular Atrophy

To donate to SMA:

Spinal Muscular Atrophy Foundation

To support legislative action:

Legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, The SMA Treatment Acceleration Act

Is Drug Use a Human Right: Montel Williams and Sting Think So | Socyberty

2010-06-11T21:49:00.000-07:00

Is Drug Use a Human Right: Montel Williams and Sting Think So | Socyberty

Sting, a world renowned musician, saying that he supports the Drug Policy Alliance because, “The war on drugs represents an extraordinary violation of human rights” and because he believes in the right to “sovereignty over one’s mind and body.” Montel Williams, a television personality, says he supports the Drug Policy Alliance, “Because whether you use drugs or not, you deserve to be treated with respect, kindness, and dignity” and because he believes “in personal freedom and choice.”

Heller’s Syndrome Often Confused with Autism | Healthmad

2010-06-11T09:51:00.000-07:00

Heller’s Syndrome Often Confused with Autism | Healthmad

Heller’s Syndrome (also known as (CDD) Childhood Disintegrative Disorder and disintegrative psychosis) is an extremely rare syndrome. Incidence is only one per 50,000 children, about sixty times less frequent than autism. However, research often questions the prevalence due to the similarity between Heller’s Syndrome and autism causing under-diagnosis / misdiagnosis.

Physicians May Face Cash Flow Problems As Congress Debates "Doc Fix "

2010-06-10T21:51:00.000-07:00

Unless Congress can get their rear ends out of neutral, medical practices that take Medicare will be forced to file claims at rates reduced by 21.3%. After several postponements, the 19 month Medicare “doc fix” action is finally being taken up in the Senate, but Senate may be too little too late.

The Medicare payment cuts were scheduled to start June 1st, but the agency that oversees Medicare (CMS) asked contractors to delay processing patient claims for 10 business days in an effort to give Congress time to act. However, June 10th is here and the cuts have still not been addressed by Congress. Senator Charles Schumer of New York spoke about the issue in a press conference this week. He says the Senate is expected to have the 60 votes early next week.

Even if the Senate passes the legislation next week and avoids a Republican filibuster, it still must pass the House and be signed by President Obama. So we are looking at a minimum of several weeks of Medicare rates being reduced by 21.3%.

This means a potential serious cash-flow shortage for physicians. Physicians can opt to not submit the claims until they can get an unreduced rate -or- immediately submit the claim at the reduced rate and hope for a better retroactive rate once the doc fix is passed; either way, the Medicare health care provider is going to be cash strapped with the cut. Medicare makes up about 30% of the average doctor revenue. We may see medium to small practices making serious cuts to make up for their income loss.

Read more:

http://thehill.com/news-by-subject/healthcare/102021-delay-in-medicare-payment-fix-could-mess-up-doctors-cash-flow?page=2#comments

http://www.medscape.com/viewarticle/723317

Earn Money Writing Online!

2010-06-09T21:54:00.000-07:00

It is often hard for the parent of handicapped children, young children, and special needs children to balance the need for a paycheck with the desire to stay home with the needy child.

I know when I found out that Kaitlynn was going to have extensive medical problems, I did not hesitate to quit my nursing job and devote myself to her. However, that decision drastically impacted my lifestyle and ability to pay bills.

I turned to the internet as a way to make up a small portion of my income. Anyone that tells you that there are get rich quick portals on the internet is being dishonest. However, there are a few ways, aside from blogging, to turn your writing skills into a little cash. Keep in mind that the quality of your writing is going to determine just how much money you can make writing online. These are two of my favorites:

TRIOND

You are paid based on the amount of traffic you bring to the writing. So, you must build up a steady stream of traffic and regular readers to make any money with pay-per-click writing.

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I have tried several pay-per-click writing sites, but my favorite is Triond. Triond is essentially a publishing service that enables you to write at will and publish content of any type to a variety of niche websites that covers topics such as: poetry and literature, business, sports, travel, health and wellness, science, cooking, etc.. You can keep track of everything you publish on Triond, how many views you get per article, comments, the source of traffic, how much money you make per entry, etc.. You can even personalize your profile page to become a writing portfolio of sorts. The company places display and contextual advertising in your content. They share 50% of the ad revenue with you (Earnings= page views*eRPM/1000.) You can also set up ad sense on the content and make even more money. Referring writers is yet another way to increase your earnings.

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Payments are once a month by PayPal, Western Union, or paper check. I would suggest PayPal. I started out getting a paper check, but the banks would not cash it…since it came from Israel. I have been writing under Triond for 3 years and have received my earnings every single month. Another great thing about Triond is that you will earn "lifetime" on every submissions. I did not write anything for the first three months after my second child was born and was still earning $30.00-$60.00 a month just off my past work.

I would invite you to sign up for Triond using my link (here), as Triond will pay me 10% on top of whatever you earn per month:)

TEXTBROKER

I tried 3 different pay for content type sites. The only one that I would recommend is Textbroker. I made $800.00 the first month.

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Textbroker serves as a posting portal for authors to pick and choose content orders to write. The orders are broken down by theme/subject, writer level, and money per word paid. You opt what to write on based on your personal knowledge and expertise. The client will post whatever specifications (SEO, word count, etc..), you write it to that specification, and you get paid. The positive is that you don’t have to market the work to get paid, like at Triond. Once you become established, you will also find satisfied clients contacting you directly for work orders. Textbroker gets the money from the client before they publish the work order…so you are guaranteed payment.

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Keep in mind that you must use correct grammar! Many of these orders are for professional or educational use, and poor grammar will not be tolerated. Unlike Triond, which is foreign based, you must submit your tax information at Textbroker!

School Imposes Ban on Hearing Impaired Girl Using Sign Language | Socyberty

2010-06-09T19:29:00.000-07:00

School Imposes Ban on Hearing Impaired Girl Using Sign Language | Socyberty

I read an ABC News article this week about (then) 12-year-old Danica Lesko that literally left me fuming. Danica Lesko’s is hearing impaired. Her primary way of communication is sign language, especially in noisy environments like a school bus.

Stonybrook School in Branchburg, N.J. somehow rationalized Danica using sign language on her school bus as a “safety hazard.”

Read more here.

Selective Elective C-Section Delivery Creates Greater Risk of Autism and Special Education Needs for Child

2010-06-09T13:25:00.000-07:00

I have never liked the idea of selective elective Cesarean deliveries. It is one thing if your health is at risk and you need to have a C-section early, but many parents are pressuring their OB provider to schedule early C-sections for convenience sake….for example, a husband that works away and might miss the delivery.

Now comes a new study showing giving scientific backing as to why selective elective Cesarean delivery is not really a wise thing to do. It has been clear for a long time that extremely preterm babies, say 25 weeks gestation or so, have a much higher risk of special education needs. However, later term early deliveries, say 37-39 weeks gestation, have never been examined in relation to risk of special education needs.

The birth history of 400 thousand school aged children was analyzed by Scottish researchers. They found that autism and or special education needs (dyslexia, poor vision, deafness, etc..) were 1.16 times greater for babies born at 37-39 weeks than those born at 40 weeks.

Sources:
NHS: Early Babies and Special Needs

PLoS Medicine: Gestational Age at Delivery and Special Educational Need: Retrospective Cohort Study of 407,503 Schoolchildren

Medical News Today: Babies Born At 37 To 39 Weeks Have Higher Risk Of Autism And Special Educational Needs

Cornbread Tacos | Notecook

2010-06-07T23:14:00.000-07:00

Cornbread Tacos

Tuesday Tag-Along Blog Hop

2010-06-07T21:26:00.000-07:00

Oh boy…. it is time for Tuesday Tag-Along blog hop again. I discovered the tag -along last week and had a blast meeting new bloggers, following a few new interesting blogs, and gaining some new followers myself.
Twee Poppets Review and Giveaway, the host, has done a fantastic job by creating the Tuesday Tag-Along.

Remember that there is a new list every week. You must link up again to be part of the tag-along. It opens every Monday night at 8:59pm PST. The MckLinky will be open to add your blog until 11:59pm Tuesday night.

Remember how it works:

    * Create a new Tuesday Tag-Along blog post. Include the Tuesday Tag-Along button by copying and pasting the code above.
    * Add your blog name and the URL of your TTA post to the MckLinky below.
    * Follow Twee Poppets, the hostess blog listed in the first slot. Twee Poppets will follow you back! (Note: If you want Twee Poppets to follow you back, you MUST leave her a comment saying that you are a new follower and leave a link to your blog!)
    * If you can, please follow the blogs in the three slots before you (e.g., if you're number 20, follow numbers 19, 18, and 17). This is not mandatory, but it will help ensure that everyone who signs up gets a few new followers!
    * Follow as many other blogs as you want. The more you follow, the more that will follow you back! Be sure to tell them that you're following from Tuesday Tag-Along! You may also want to leave a link to your blog so they can return your follow more easily.
    * When you get a new follower through Tuesday Tag-Along, be sure to follow them back! It's just common courtesy. :)

Visit Twee Poppets for more information about blog hopper of the week.

Leave me a comment that you are a new follower, and I will follow you back! Have fun blog hopping:)

16 Reasons I Hate Going to Wal-mart

2010-06-06T21:14:00.000-07:00

16 Reasons I Hate Going to Wal-mart

Autism Diagnosis Using A Simple Urine Sample

2010-06-04T22:05:00.000-07:00

Often parent's and medical professionals find the path to an autism diagnosis to be lengthy, difficult, and lacking in uniformity. Medical professionals in the U.K. use a lengthy process of social interaction, communication, and imaginative skill testing to obtain a diagnosis. Aside from this process taking sometimes years to complete, autism is often misdiagnosed as a different behavior related problem.

This is unfortunate because we already know that early intervention can make a huge difference in how an autistic child is able to progress, and at what rate.

There may be a way to accelerate and solidify the autistic diagnostic process. Imagine if autism could be diagnosed before the child showed symptoms of it! Typical onset of autistic symptoms is between 1 and 5-years-old. Read more.

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A simple urine test might just enable professionals to immediately identify children with autism and allow them to get that important early intervention. Researchers from Imperial College London and the University of South Australia have found that autistic children have different metabolic fingerprints in their urine than children without autism an non-effected children with autistic siblings. Those with autism supposedly have a different makeup of bacteria in the gut. This is thought to be why many autistic people suffer from GI issues.

The National Autistic Society in Britain is skeptical of the accuracy of such a test, and the researchers admit that the method is still in the beginning phase of development . However, they are planning clinical trial studies with hundreds of children, and say that if the clinical trials go well, then the urine test could be available by 2015

Tuesday Tag -Along

2010-06-01T10:44:00.000-07:00

Blog Hops are great ideas for blog promotion, and they are simple! This blog hop is hosted by Twee Poppets. Just add your blog name and the URL of your TTA post to the MckLinky below. Follow Twee Poppets and leave her a comment that you are a new follower with the link to your blog, and Twee poppets will follow you back! Although not mandatory, it is always nice to follow the three blogs in front of yours (ie:if your blog is number 150, then follow blog #149-147.) This just helps everyone get a few new followers.

Twee Poppets can be found in the first slot. If you want the honor of having the second spot, then pass the word on in your blog- see here for how to do it.

This is a Blog Hop! 148 entries so far... you're next!

Fibrodysplasia Ossificans Progressiva (FOP)

2010-05-31T23:37:00.000-07:00

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Fibrodysplasia ossificans progressiva (FOP) literally means the soft connective tissue turning to bone. That pretty much sums up the disease- tendons, ligaments, muscle etc… being replaced by bone. Now, if you stop to think about the implications of the disease, it is quite terrifying. For example, take a look at your moveable, bendable, flexible fingers. Now, imagine a bridge of extra bone developing across the joint. This bone would progressively restrict movement…essentially forming a second skeleton that imprisons normally moveable body parts in bone.

source source

This photo shows a short and malformed great toe, one of the classic physical characteristics of FOP.

FOP is the only disease known to medicine where one normal organ system mutates into another. In other words, there aren’t any other diseases where your brain turns into your liver, you heart turns into your kidneys, you spleen turns into your bladder….etc. FOP not only involves a spontaneous mutation into bone, damage to the body as mild as just getting an immunization can cause an inflammatory response that “flares-up” the bone replacement process.

There are cases of supposed FOP dating back to the 17th century. In 1692, Dr. Guy Patin documented a patient that had classic signs of FOP and in 1736, Dr. John Freke documented a patient with signs of FOP. In the 1800’s, there were medical cases described by attending doctors as “turning to stone.” Throughout history, there have only been 700 confirmed cases of FOP. So, it is extremely rare, but it is equally extremely debilitating.

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One of the most well know cases of FOP is Harry Eastlack. His condition began in 1943 at the age of 10. By the time he was 39, his body had ossified to the point he was only able to his lips. He died of pneumonia just a few days before his 40th birthday. Harry knew the significance of his body to future hope for others. He donated his body to science in hopes that doctors and scientist could begin to understand FOP and one day find a cure. His skeleton indeed provide much of the insight doctors now have into FOP and is now preserved in history at the Mütter Museum in Philadelphia. Eastlacks’ body does more than any graph, chart, or article to explain how harsh and cruel this disease truly is.

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Sadly, there is still no treatment or cure for FOP. The average lifespan for someone with FOP is only 40 years. Activities that could cause a flare-up of bone replacement are avoided. Surgical removal of the extra bone actually makes the condition worse, as the body’s response is to repair the surgical area with more bone.

Researchers from the University of Pennsylvania finally found the genetic mutation responsible for FOP in 2006. The mutation is in the gene, ACVR1. Now that researchers now what causes FOP, treatment, and even a cure is actually plausible. The FOP research has also led to knowledge that might aid in more common skeletal conditions such as - osteoporosis, arthritis, and ossified heart valves.

Most of the research for FOP is funded by the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), a nonprofit started in 1988 by Jeannie Peeper, who suffers from FOP herself.

For current cases of FOP:
Whitney Weldon
Joshua Scoble
Ashley Kurpiel
Beth

Leading expert in FOP:
Frederick S. Kaplan

Your Convenience and Excuses Are Not Worth The Life Of My Child

2010-05-31T08:42:00.000-07:00

I recently wrote an article at Triond about handicapped parking. I will share most of it here, but to see the Mississippi law on enforcement and violations of the handicapped parking laws, see here. My five-year-old daughter, Kaitlynn is handicapped. Her life is confined to a wheelchair and her medical needs are extensive. She thoroughly enjoys our weekly trips to the Columbia, Mississippi Dirt Cheap and Wal-Mart. Although she can not “talk,” she vibrantly squeals with delight as we turn into the Town Square parking lot. As one might imagine, getting out and about is cumbersome and physically trying for me, but seeing the enjoyment on Kaitlynn’s face is well worth it.

That said, what isn’t worth it is risking her life.

It never fails that I pull into the Dirt Cheap parking lot to find both handicapped parking spaces and the blue line “no parking” area in between the two parking spaces occupied by at least one vehicle without a handicapped parking permit/tag. I have called the Marion County Police Dept. dozens of times over the past 3 years to report the problem. I have been told everything from -“go inside the store and ask the store to ask the violator to move” …. “an officer is on the way”……“all officers are busy.” Not once has an officer actually showed up, much less ticketed the violators. I have given up on the police enforcing the law. I do wonder if they might show up for someone reporting their car vandalized?

Violators may look at the handicapped parking spot and those empty blue lines as a clear shot to the door on a rainy day or a pardon from a long walk from the back of the parking lot. Others may justify the violation with excuses like, “I’m only going to be a minute” or “if the person is handicapped, then they should stay home.”

If you think you get wet, imagine how wet my daughter and I wet after lugging an 80lb wheelchair out of the trunk, strapping her in, and pushing her to the door! A long walk for you is an obstacle course of danger for a person in a wheelchair, as larger vehicles backing out can not see a wheelchair behind them. Parking in the blue lines may seem harmless to you, but those blue lines are not there just to look pretty. Handicapped vehicles with a lift can not let their lift out if you are parked in those blue lines. If someone parks aside me in a large vehicle, or just too close to my vehicle, I can not get my child back into the vehicle. I must trust some stranger to watch my daughter while I back out into the middle of the road to load her up, and then pray that no one runs us over in the middle of the road. You convenience and excuses are not worth my daughter’s life!

I realize that many will probably not care about this ongoing problem. It is not something you have ever experienced. It is not something you are willing to imagine experiencing, that would just make it too real. Therefore, many will dismiss it as a passive aggressive mother complaining about something trivial. But, I will remind that we are all just one accident or slap of nature away from finding ourselves in need of a handicapped parking space.

If you do not empathize with the plight of the handicapped, you might find merit in the money that handicapped parking tickets would contribute to the things you do care about. State and local budget deficits across the country are causing “cut backs.” Handicapped parking violation fines in Mississippi are $200.00 each.

If you want to make an impact on handicapped parking violations: call the police each and every time you see someone parked in handicapped parking that does not have a permit/tag, report the violation to the business that is responsible for the parking lot, make it a community
project to report and document infractions, etc…

Read more what Mississippi law is on handicapped parking here.

Brooke Greenberg: The Girl Frozen In Time

2010-05-24T22:11:00.000-07:00

16-year-old Brooke Greenberg is only 2 ½ feet tall and weighs only 16 pounds. Looking at Brooke, you would think that she has been frozen in time as a 4 or 5-year-old.

source

Like her peers, Brooke enjoys music and shopping. However, unlike her peers that are getting their drivers license, excited over their first date, eating pizza, and enjoying high school….Brooke travels in a toddler stroller, is excited about her swing, is so fragile that it takes her 10 hours a day just to eat, and still wears diapers. She spent 65% of the first five years of her life in the hospital.

Brooke is a medial mystery. She has essentially just stopped aging. Doctors aren’t sure how or why Brooke developed this mutation of the gene that controls aging and development. Her bones are the size of a 10-year-old child. Her teeth are like a 6-year-old child’s. Her brain is the equivalent of a 1-year-old child’s. However, her hair and nails grow normally.

Some people may find it ironic, but aging and development are actually controlled by the same genes. When we are children, these genes initiate structure and function and coordinate change. These genes are not suppose to turn off, they are supposed to cause the body to “erode” over time. Brooke’s aging and develop genes have apparently been turned off.

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Brooke’s three siblings- Catlin, 19, Emily, 22, and Carly, 13 do not share her mutation. They are all normal in development and size.

source

Dr. Richard Walker, a biomedical researcher and editor-in-chief of Clinical Interventions in Aging, began following Brooke’s case in 2006. He has been able to determine that Brooke’s aging and development genes have been “turned off,” but he doesn’t know the why’s or how’s of it. Dr. Walker says, “There’s no hope for her {Brooke}, but what she brings to science is information on how we may be able to delay aging.” They hope to find the mutation, manipulate it in animal experiments, and possibly find a way to extend the lifespan of the animal.

While I agree that Brookes’ genes could hold the key to possibly expanding the life of a human, and there is no doubt that would be one of the largest medical breakthroughs of history, I am very uneasy about the lack of concern or “hope” for helping Brooke.

For more information about Brooke Greenberg:

Wikipedia
TLC
People.com
Discovery News
Fox News Video

Maddox Flynn's Journey: Canadian Boy Finds Help For Lymphatic Malformation In the United States

2010-05-22T12:21:00.000-07:00

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Maddox Flynn is a two-year-old toddler full of vigor, laughter, and bright curiosity. Sounds much like any other child his age, but Maddox has a severe facial deformity that makes his life very different.

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Maddox has a lymphatic malformation on his face. Doctors in his home country of Canada have been unable to perform a surgery that would remove the growth, due to their lack of ability to perform such a complex procedure. Yet, if left untreated, the lymphatic malformation would continue to worsen and become even more disfiguring with time. Maddox is already thought to be blind in one eye as a result of the lymphatic malformation.

So, Maddox’s father started searching for someone- somewhere that could perform such a surgery. He eventually found Dr. Milton Waner, the co-director of the Vascular Birthmark Institute of New York.

Maddox’s father told Fox News that he knew immediately that Dr. Waner would be the one that could help transform his sons life. The only catch was funding. The cost of Maddox having surgery was beyond the means of the family. However, once the media was alerted of Maddox’s story, the family saw a generosity from Canadians and New Yorker’s that would enable Maddox to have his surgery. All together the donations totaled $175,000.

So, the family packed up and headed to New York for Maddox to have his surgery.

source

Dr. Waner, described Maddox’s condition as follows:

“Normally lymph vessels — many call them the gutter system of the body — collect all the extra fluid and take it back to the veins.” “With lymphatic malformation, the vessels don’t function, and then you get a backup of fluid, and then cells migrate into fluid, fibroid tissue grows in as well. It then becomes a very scarred, fluid-filled mass of tissue. And so this is what we’re attempting to remove.”

Maddox had his surgery Friday, and will return to his Canadian home on May 28th, 2010. He will return for a second surgery in September. Let us remember Maddox in our thoughts and prayers.

To find out more about Maddox’s medical journey, check out the family’s Facebook page and Maddox's Journey Blog

This young man is not only a testament to just how lucky we American's are to have such an advanced medical system, but also proves what a little bit of generosity can accomplish.

Special Needs Children Abused and Neglected By School Systems Across America

2010-05-20T19:28:00.000-07:00

Just one year ago, congressional auditors brought the widespread abuse techniques used on special education students to the attention of the general public. The report, seen here, uncovered abuse of restraining, seclusion, and discipline techniques…. some of which were even linked to deaths.

Details from incidences such as: children being secluded for hours at a time while being taunted by teachers, children being held face-down on the ground, handcuffed, etc.. were included in the report.

State law, school policy, and regulation of such varies greatly from area to area, providing the perfect breeding ground for abuse of over 6 million special needs children. At the time of this report, only five states even bothered to keep records of incidents where special needs children were separated or restrained.

Many teachers documented in the report did not have the proper training related to seclusion and restraint. Experts say that children should only be isolated when they pose an immediate threat to themselves or others. Still, many of the teachers were using isolation as punishment to “make” the children comply with classroom rules.

Yet, with this report giving light to hundreds of special needs children being abused in the school system and the growing incidences actually appearing in national news, still nothing is being done to change a broken system.

Take Port St. Lucie's school system for example. This school felt that it would be okay to vote an autistic boy out of his kindergarten class for being “unruly.” Alex Barton was made to stand in front of his classmates, in Survivor style fashion, and listen to why his peers decided to vote him out of “their” class. See Alex Barton’s story here. A Parkway Elementary School student was handcuffed by a Sheriffs deputy after a temper tantrum in the middle of class. A few days later and another temper tantrum, and the girl was transported to the local adult mental institution by the school.See that story here. I recently wrote about an autistic boy that is being charged with a felony after drawing a picture of a gun. See that story here. These types of incidences occur far too often, and nothing is being done about it.

First, teachers of special needs children need to be better educated. For example, children with autism move around frequently. Trying to restrain the child, only worsens this behavior. Imagine an itch you have and someone holding your hands and not letting you scratch. The itching does not go away just because you are restrained; in fact, the itch becomes worse. It is the same principle for autistic children.

Plain and simple, the teacher has a job to teach. Some children require extra measures or special plans of action to be taught. Special Education teachers are supposed to be equipped with this knowledge. We wouldn’t tolerate a math teacher that wasn’t able to do a fundamental element of her job, like add and subtract. So, why are we tolerating special education teachers that obviously lack or ignore the fundamental elements required to teach special needs children?

Second, it is time for some universal laws to protect these children from abusive school environments. We have tried leaving it up to the states and individual school systems, and they have failed these children. Contact your state elected officials here and here and The House Education and Labor Committee here to demand action!

Special Education and Main-streaming

2010-05-18T22:43:00.000-07:00

A very good friend of mine, Chris Stonecipher, wrote an excellent article about special needs children and mainstreaming in education titled, "Special Education and Main-Streaming." Chris is an advocate for special needs children and their families. He has first hand experience with Autism, and has provided much needed attention to various issues related to special needs children. A snippet of the article:

"Main-streaming is the inclusion of special education students in general educational classrooms. It has been widely debated as to how successful students can be using this system. In this article, I give some personal insight to my feelings on main-streaming."

Be sure to Read more!

New Research Shows High Fat and High Calorie Meals May Worsen Asthma

2010-05-17T20:12:00.000-07:00

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A new study that suggests eating high fat- high energy meals may not be wise for those with asthma. The Australian research will be presented to the American Thoracic Society ATS 2010 International Conference in New Orleans Louisiana on May 14th -19th.

The number of asthma sufferers in western countries has been on the rise in recent years. Westernized diets now include much more fat that other parts of the world. For this reason, experts have tried to link environmental factors such as- diet as a contributing factor to asthma. Previous research has in fact shown that high fat diets do stimulate the immune system, thereby causing inflammation blood markers to be higher. However, this study is the first to look at how high fat meals particularly affect airway inflammation.

Dr. Lisa Wood, of the University of Newcastle, New South Wales, led the research. The research team monitored 40 asthma patients after they ate low fat low calorie meals vs. high fat high calorie meals. The high fat meals consisted of fast food burgers and hash browns, that totaled about 1,000 calories (50% fat.) The low fat meals consisted of reduced fat yogurt, that totaled about 200 calories (13% fat.) The researchers took sputum samples before the meal and four hours post meal to test for markers of inflammation. Within four hours of the consuming the high fat meals, those patients were showing signs of airway inflammation. The low fat meal patients were not showing any inflammation. The high fat meal also appeared to suppress the effectiveness of the asthma reliever, albuterol.

Specifically the results showed marked increase in airway neutrophils and TLR4 mRNA gene expression and reduced bronchodilator response in the high fat/calorie meal patients.

It is important to remember that this is the first study ever done about high fat/high calorie meals in relation to asthma. Other studies are needed before we label this as “fact.” However, if future studies confirm this research, we may start seeing doctors use reduced fat / calorie dieting as an element in asthma treatment

American Thoracic Society ATS 2010 International Conference
Related news articles here and here

For Kaitlynn

2010-05-13T14:14:00.000-07:00

This is a poem that my mother, Chloe Oliver, wrote for Kaitlynn:

I saw you walk the garden path tonight.

You ran and romped as children often do.

You picked a flower and gave to me.

We walked together and you called my name.

You reached and grasped your mother's hand.

Then, in an instant, you were gone

Chasing butterflies and cats and little puppy dogs.

I saw you play with friends tonight.

Other five year olds with whom to say:

"Come, let's slide the slide and swing the swing!"

You yelled and screamed with great delight,

Running and chasing each other round and round.

Exasperated, you sat down to catch your breath.

Then, jumped back up to do it all again.

I saw you dance the dance tonight.

Wiggling in motion to each beat of the music.

You swayed to the rhythm and sang each line

As I and your mother watched every move.

Then you said: "I'm a star,come dance with me."

And we knew it was true and knew that we must.

So, we all swayed and wiggled and danced and sang.

Morning came, and I knew it was a dream.

For in your little chair,you do no such things.

Trapped in a body that will not work,

You sit in your place and watch all the world.

You watch the others and always observe

Every movement, each gesture, and each spoken word.

And I know that you want and desire what I dream.

I know that you do and someday you will.

A day will soon come when all is made right.

The earth will be cleansed and the lame will be whole.

And you my dear child will do many things.

No longer bound, your chair will not hold you.

You will walk and expound on all that you know.

No longer will actions be trapped in my dreams.

Then, we each will walk the garden path

And we will dance and sing together.

We will take each other hand in hand.

Yes, we will romp and play and learn.

We will do it all together

And we will do it with delight.

Till then,my love, you do it in my dreams.

Love,

NANNAN OLIVER

3-D Occupational Therapy With Dr. Dido Green

2010-05-13T10:15:00.000-07:00

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Dr. Dido Green, of Tel Aviv University’s Dept. of Occupational Therapy, was inspired to work with children with motor disabilities through her love of ballet. She retired her ballet shoes and became an occupational therapist. For over 20 years, she has worked with children with motor disabilities. Now, she is pioneering a new “virtual” method to analyze movement patterns in children; thereby, creating a means to more effectively treat and monitor children with motor disorders.

Dr. Green is using a virtual tabletop that looks much like an old video game. The system is called the ELEMENTS SYSTEM. It was created at Australia's Royal Melbourne Institute of Technology as a way to move kids with disabilities and use virtual reality tools to provide home-based treatments.
It allows three dimensional exercises to be combined with two dimensional graphical movement games in the tabletop.

Now, in “parent terms,” this is invaluable because many children find therapy regimes tedious, difficult, and boring. This makes getting the child to do therapy exercises and practice skills nearly impossible. Dr. Green claims that the virtual tabletop appeals to children as young as three and as old as 15. The movement-oriented games allow the child to reach therapy targets in a way that is comfortable and fun.

Some parents may also find it difficult to do daily treatment regimes at home. Dr. Green’s goal is to bring the system into the home for therapist, child, and parent to use as a treatment resource. Remote rehabilitation using the ELEMENTS SYSTEM would mean that the therapist could be located one place, log in with a webcam, coach the child in their home, and monitor daily progress.

So, far the research around the children that have been using the ELEMENTS SYSTEM is nothing short of impressive. The research cites one child with a paralyzed hand that used the interface for three days a week for one month. This child began to perform more complicated movements such as opening a door and buttoning a sweater for the first time in her life.

This could change the way we think of therapy, and the entire method by which it is provided.

Contact Dr. Dido Green
More about Dr. Dido Green and here

5 Things On My 'Honey-do' List That's Never Done

2010-05-11T12:41:00.000-07:00

I found a very interesting contest at TwitterMoms forum here The TwitterMoms/ ServiceLive contest is asking bloggers to write about the "5 things on your 'Honey-do' list that never get done," in just 500 words or less. Sigh, just five. The folks at TwitterMoms have obviously never met my husband! I could write a 1000 page essay about my honey do list without missing a key stroke.

Honey do list:

1. Honey, please read the list and mark off things as they are done- Do not throw the list away; do not hide the list; do not mark out things as done that aren’t done; do not claim that the dog or children ate, vomited, or urinated on the list.

2. Honey, please collect all of your tools that are scattered about the yard, car, truck, patio, bookshelves, under the bed, at work, and with friends. You have much to do.

3. Honey, please fix the leak in the roof. Your idea to mark this off the list after covering the leaking exhaust fan with aluminum foil and duck tape did not work. See #4.

4. Honey, please fix the gigantic hole in the sun room ceiling. Failure to fix #3 has resulted in the sun room ceiling collapsing. I know that it is romantic to see the moon and stars from our new sun room moon-roof hole, but the power company called to ask why our electric bill was eight times what it normally is.

5. Honey, please mow the grass or bring home a machete and some Patagonia pants so that I can chop a path to the car.

Find a Local ContractorGet a Contractor

Disclaimer: I wrote this blog post while participating in the TwitterMoms and ServiceLive blogging program to be eligible to receive $100 in ServiceLive Bucks. For more information on how you can participate, click here.

How to Make Homemade Baby and Pureed Foods

2010-05-11T10:40:00.000-07:00

Have you ever considered making your own baby food? Whether you are the parent of a special needs child that needs pureed food or the parent of a baby just starting out to eat, making your own baby food has many benefits.

Benefits:

Assurance that the proper hygiene was used to prepare the food.
Assurance of nutritious value, freshness, and filler free food.
Satisfaction of custom making baby food that best suits your child’s tastes.
Ability to make the baby food organic, vegan, or any other lifestyle that you abide by.
It’s cheaper than prepackaged baby food.
It can be made and stored in bulk.

Basic Methods to Cook Baby Food:

Baking
Boiling
Microwaving
Steaming

Steaming is one of the best methods to keep all the food nutrients intact. With steaming, the nutrients are cooked into the food. If you don’t have an electric steamer, just place the food in a colander and place the colander over a pot of boiling water, then cover the colander with aluminum foil or a lid. Microwaving also keeps in most of the foods nutrients. If the food is something that you wouldn’t bake for yourself, then don’t bake it for baby either. When boiling foods, be sure to put as little water as possible in pan. You lose a lot of the nutrients when you boil foods in a lot of water.

Once you have cooked the baby food, you can move on to getting it to an age appropriate and swallowing ability texture and consistency. For older kids with good swallowing ability, a simple mash, food mill, or chop in the food processor is suffice. The texture will still be a little lumpy by just mashing the baby food up. For smoother textures, use an emulsifying blender. Add water, stock, juice, milk, etc.. to the blender a little at a time until you get the food to the right consistency for your child.

Storing Baby Food

Refrigerator
You have to store baby food just as you would the food that you eat. If you have made enough baby food for just 2 or 3 days, then store it in on the refrigerator shelf in an airtight container. Dip each serving out as you use it. Do not feed baby from the food container, as it can grow bacteria.

Freezer

You can make large batches of baby food and save yourself a lot of time. Once the prepared baby food has cooled, pour it into ice trays. Cover the ice tray with saran wrap and freeze till solid. Remove the baby food just as you would ice cubes. Place cubed baby food into freezer bags. Label freezer bags with type of food and date prepared. There are also specialty baby food trays on the market, but I find a 30 cent ice tray works just as well. Now, you have individual servings of baby food that you can thaw individually and use as needed. It takes about four hours to thaw in the fridge or you can microwave for 20-30 seconds. An entire months worth of baby food in just one day.

That is all there is to it. Simple, affordable, healthy, and fast….who could ask for anything more~

As far as recipes, your imagination is the limit. Of course, follow the pediatricians’ cardinal rule of only introducing one new baby food four days to new eaters. The pediatrician should also give you a list of foods that are high allergens. Aside from that, get inventive with your recipes. Here are some examples:

Peach and Ricotta Cheese
Ingredients:
1 peach
2 drops of lemon juice
2 tbsp ricotta cheese
1 drop of pure vanilla

Method:
Cut the peach in half and remove the pit.
Rub 1 drop of lemon juice on each half of the peach.
Roast on a baking dish, cut side up, at 425 degrees for 20-30 minutes.
Allow peach to completely cool.
Mash peach flesh with ricotta.
Stir in vanilla.

Brown Rice with Pumpkin and Peach

Ingredients:
1/2 cup cooked brown rice
1 cup of peeled and diced pumpkin
1 cup of peeled and diced peach
2 tbsp chicken stock

Method:
Add peach and pumpkin to a heavy boiler.
Add chicken stock.
Simmer for 20 minutes.
Stir in brown rice.
Cook additional 10 minutes over low heat.
Mash or blend to desired texture.

Creamy Butternut Squash

Ingredients:
1 cup of diced butternut squash
1/8 cup cream cheese
1 tsp fresh chopped parsley

Method:
Steam butternut squash until fork tender.
Add chopped parsley and cream cheese.
Mash or blend until desired consistency.

Medication Errors and How Parent's Can Prevent Them

2010-05-10T10:50:00.000-07:00

Special needs children often require multiple medications, multiple times a day….a recipe for complicated drug regiments. For many of these children, their medications are their lifeline. It is vital to give medications exactly as directed.

Dr. Kathleen E. Walsh, assistant professor of pediatrics at University of Massachusetts Medical School, led a new study that suggests parent's frequently make mistakes while giving meds to their chronically ill children.

The research team went into the homes of 83 different chronically ill children ages 6 months to 20-years-old that suffered from cancer, sickle cell anemia, epilepsy, etc.. Altogether, the researchers watched 166 drugs being administered by the parent, caregiver, or children themselves. They also checked over 500 medications. Two doctors then followed up to analyze the administration and medication correctness. 128 medication errors were found. Of the 128 medication errors noted, at least 73 could have seriously hurt the child, and 10 actually did injure the child. One mistake involved a serious overdose when a chemotherapy dosing label directed six tablets a day. The child was actually supposed to have seven tablets a week. However, simple mistakes, like not using the correct syringe or pill cutter, can result in the child getting too little or too much of a medication.

The study also noted that these medication errors are not attributed to lack of higher education. In fact, 49% of the medication administers had at least a bachelor’s degree.

As a nurse, I can attest that parent’s are not alone in medication error statistics. Even the most careful medication administer can have a mistake. However, many medication errors are preventable. Here are some tips to help prevent medication errors:

1. Make sure that the doctor and pharmacist gives you written instructions that include information such as dosage, how often the medication is given, if there is a specific time of day to give the medication, the route that the medication is to be given (by mouth, injection, IV, G-tube, rectally), drug interactions, storage instructions, whether the medication can be crushed if needed, and other medication specific information.

2. If you have any pause or question about the medication, the dosage, or the directions….contact the prescribing doctor. There is no such thing as a stupid question. Make sure you have complete clarity about the medication before giving it.

3. Organize medications. Assign a different area in the home for each person’s medications, and keep all of each person‘s medications together.

4. If you are giving your child multiple medications…multiple times a day, make yourself a medication administration record. It doesn’t have to be anything fancy. List each medicine on a line; include the dose directions, strength, and what the medication is for beside each medication. For example, “Humalog insulin 2 units subcutaneous 7 A.M. and 7 P.M. for diabetes.” If the medication requires an additional action such as taking a blood sugar or blood pressure, then write that action on a separate line, and record the results. The medication administration record should be brought with you to all relevant doctor appointments.

source

5. You shouldn’t actually be using a tablespoon or teaspoon to administer medications. Use a syringe or dosage cup with clear and easy to read markings. Use a pill crusher to crush medicines and a pill splitter to cut pills. Rinse and dry the measuring device out daily to prevent medication from crusting inside and altering the dosage.

6. Do not leave it to the child to take their medication. Many medications have side effects that deter the child from wanting to take the medication. Rather than arguing with you or voicing their concerns, many children just don’t take the medication. Even older teens should have oversight.

7. Check, check, and check again. It doesn’t matter how familiar you are with your child’s medicine regiment. Check the label when you begin. Check the medication label again when you sign your medication administration record. Check the label a third time before you give the medication. You are checking to make sure you have the right med, the right dose, and at the right time.

Toys For Special Needs Children

2010-05-06T13:41:00.000-07:00

Finding toys suitable for a special needs child is a disheartening and challenging task. Many area toy stores just do not carry toys that are congruent with a special child’s physical ability or understanding. Many standard toys also don’t provide the correct stimulation and skill building for special needs children.

For example, a child with Down Syndrome often has difficulty with fine motor skills. A typical children’s puzzle with 20+ small pieces can be difficult for this child to work with. A large puzzle with just a few pieces works much better, but is hard to find. The same with CP. CP children have spastic and involuntary movements that make working with small tedious toys difficult. ADHD children would find focusing on in-depth detailed instructions difficult. Toys that have more creative leeway are better. And so on…

Able Play is a great resource to find physical, cognitive, age, and sensory appropriate toys for special needs children. Able Play does the research for the parent. The company does a comprehensive product evaluation, and then relates the evaluation to children’s special needs and abilities. The 1-5 rating system on cognitive, sensory, communication, and physical ability for every toy makes it easy to figure out what toy suits your child.

Special Needs Toys provides toys for senses (visual, auditory, tactile, proprioception, and balance) and skills (motor, cognition, independence, communication, and socialization.) I love the adaptive swing selection on this site.

More Toys:

Different Roads To Learning
School Specialty
Ability Station
Fat Brain Toys
Kids Scope Toys
PlayAbility Toys
Sensory Edge

Lose The Training Wheels Camp: Help Your Special Needs Child Learn How To Ride A Bike!

2010-05-05T10:22:00.000-07:00

Special needs children often lack in self esteem, inclusion from peers, recreation activities, and independent transportation. It might not sound so obvious at first, but a simple activity like riding a bicycle provides a gateway for all of the above. As the child masters the seemingly impossible task of riding a bike, they gain self esteem and confidence in themselves. After mastering their skill, they can experience the independence of doing an act without caregivers helping them and participate in recreational bicycling with peers.

“Lose The Training Wheels” is a program that teaches children with disabilities how to ride a traditional bike without training wheels. Parent’s of autistic, ADHD, Down Syndrome, etc.. children often spend years trying to teach their child to ride a bike. The Lose The Training Wheels program is based on over 20 years of research by Dr. Richard E. Klein and his students at the University of Illinois. Dr. Klein created the first bike camp in 1999 in LaCrosse Wisconsin . By 2006, the program had grown to over 30 camps. Then in January of 2007, the program became Lose The Training Wheels Inc., a non-profit organization. In 2010, Lose The Training Wheels has 60 camps across the United States and Canada.

The Lose The Training Wheels camps teach children to balance, pedal, steer, and take off on their own by using just five (75 minute) riding sessions. The program says that over 80% of the children are at least able to balance on a bicycle by the end of the five day camp. Each child has one or two volunteers that provide one on one physical and emotional support.

source

Eligibility Requirements:

Have a disability
Be at least 8-years-old
Be able to walk without an assistive device ie- walker or cane
Be willing or able to wear a bike helmet
Be able to side step quickly to both sides
Have an inseam measurement of 20”
Be under 220 lbs

                                                                       source

Schedule of Camps for 2010:
May 10 to May 14, 2010 - Fairfax County, VA.
May 17 to May 21, 2010 - Fairfax County, VA.
June 7 to June 11, 2010 - Ridgeland MS.
June 7 to June 11, 2010 - Indianapolis, IN.
June 7 to June 11, 2010 - Danville, IL.
June 7 to June 11, 2010 - South Bend, IN.
June 7 to June 11, 2010 - Parkersburg, WV.
June 7 to June 11, 2010 - Omaha, NE.
June 14 to June 18, 2010 - Rohnert Park, CA.
June 14 to June 18, 2010 - Grand Rapids, MI.
June 14 to June 18, 2010 - Columbus, OH.
June 14 to June 18, 2010 - Frankfort, IL.
June 14 to June 18, 2010 - Pittsburgh, PA.
June 14 to June 18, 2010 - Midland, MI.
June 21 to June 25, 2010 - Portland, OR.
June 21 to June 25, 2010 - Columbus, OH.
June 21 to June 25, 2010 - Charlotte, NC.
June 21 to June 25, 2010 - Wichita, KS.
June 21 to June 25, 2010 - Allentown, Pa.
June 21 to June 25, 2010 - Milwaukee, WI.
June 21 to June 25, 2010 - St. Louis, MO.
June 28 to July 2, 2010 - Bloomington, IL.
June 28 to July 2, 2010 - Columbia, MD.
June 28 to July 2, 2010 - Highlands Ranch (Denver), CO.
June 28 to July 2, 2010 - Buffalo, NY.
June 28 to July 2, 2010 - Longview, WA.
June 28 to July 2, 2010 - Chattanooga, TN.
July 5 to July 9, 2010 - Nanaimo, BC.
July 5 to July 9, 2010 - Schenectady, NY.
July 5 to July 9, 2010 - Highlands Ranch (Denver), CO.
July 5 to July 9, 2010 - Evansville, IN.
July 5 to July 9, 2010 - Rochester, NY.
July 5 to July 9, 2010 - Dallas, TX.
July 6 to July 10, 2010 - Atlanta, GA.
July 12 to 16, 2010 - Madison, WI.
July 12 to 16, 2010 - Nashville, TN.
July 12 to 16, 2010 - Harrisburg, PA.
July 12 to 16, 2010 - Victoria, BC.
July 12 to 16, 2010 - Ann Arbor, MI.
July 19 to July 23, 2010 - Marquette, MI.
July 19 to July 23, 2010 - Columbia, MO.
July 19 to July 23, 2010 - Cincinnati, OH.
July 19 to July 23, 2010 - Jacksonville, FL.
July 26 to July 30, 2010 - West Hartford, CT.
July 26 to July 30, 2010 - Rochester Hills, MI.
July 26 to July 30, 2010 - Charleston, SC.
July 26 to July 30, 2010 - St. Paul, MN
July 26 to July 30, 2010 - Toledo, OH.
August 2 to August 6, 2010 - Orange County, CA.
August 2 to August 6, 2010 - Lombard, IL.
August 2 to August 6, 2010 - Peoria, IL.
August 2 to August 6, 2010 - Falls Church, VA.
August 2 to August 6, 2010 - Owings Mills, MD.
August 9 to August 13, 2010 – San Antonio, TX.
August 9 to August 13, 2010 – Richmond, VA.
August 9 to August 13, 2010 - Rockford, IL.
August 30 to September 3, 2010 - Windsor, ON.

For more information about each date, requirements for participation, and info about how to enroll in each camp visit the Lose The Training Wheels Camp Schedule.   Learn how to get involved and host a camp. Learn how you can donate to Lose The Training Wheels.

Resource And Donation Guide For Those With Special Needs

2010-05-04T17:20:00.000-07:00

Special needs children around the world, including the U.S, often have a hard time getting the equipment that they need to become mobile. There are a lot of resources for parents in need of a mobile device for their child, adults in need of mobility devices, and individuals looking to make a donation to the special needs community.

I have compiled a list of over 20 charities and organizations that specialize in getting mobility devices to children and adults in need here- Resource and Donation Guide For Those With Special Needs

Bob Marshall Likens Special Needs Children As A Curse From God

2010-05-03T15:10:00.000-07:00

I am not from Virginia, but I have decided to make it my mission to make sure that Republican Virginia State Delegate Bob Marshall never gets elected to a public office again.

In February 2010, Delegate Bob Marshall made the following statement at a press conference to oppose state funding of Planned Parenthood.

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children... In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest.”

Listen to the words for yourself: http://www.youtube.com/watch?v=VODxVQcF_yw

After outrage by political peers, disability advocacy groups, and families with disabled children…Delegate Marshall posted a statement on his website-

"No one who knows me or my record would imagine that I believe or intended to communicate such an offensive notion." "I have devoted a generation of work to defending disabled and unwanted children, and have always maintained that they are special blessings to their parents. Nevertheless, I regret any misimpression my poorly chosen words may have created as to my deep commitment to fighting for these vulnerable children and their families."

He claims that his words were twisted out of context. I’m sorry, but his words were clear, direct, and not open to interpretation. He intentionally and clearly conveyed the message that God was taking vengeance on siblings of aborted babies by punishing them with handicaps.

Families with a handicapped child already go through an unimaginable amount of grief, anguish, and guilt. The last thing these families need is to be bludgeoned with religious rhetoric like Delegate Marshall carelessly and callously spewed.

Delegate Marshall managed to insult me, my handicapped child, and my loving God in just one statement. I will forgive him for his idiocy, but I still do not want him to ever be a mouth piece for pro-life, Virginia, or to have a vote on laws that effect the country as a whole.

Send Delegate Marshall a message here
Send Governor Bob McDonnell a message here
Send Pat Mullins, chair of the Virginia GOP, a message here
Sign “Bob Marshall Resign Now” here
Sign “Bob Marshal Should Resign” here

Mitochondrial Medicine 2010

2010-05-01T09:52:00.000-07:00

This will be the United Mitochondrial Disease Foundation's (UMDF) 12th annual international mitochondrial medicine symposium. It will be held June 18th - 19th in Scottsdale, Arizona, at the JW Marriott Camelback Inn Resort.

The UMDF brings together clinical and science research fields such as: genetics, neurosciences, cardiology, cancer, diabetes, nephrology, hematology, pediatrics, biochemistry, etc.., all of which share a common interest in the mitochondria.

The conference provides those interested or affected by mitochondrial disease an opportunity to hear from some of the leading experts on the subject. It also provide an outlet to meet others that share your interest in mitochondrial disease. The conference is a great place to cultivate networks and exchange information.

The schedule has two or three choices per time slot. Allowing attendees to pick one in each category helps to tailor the meeting to meet specific interests.

Friday Schedule:
7:00am Registration
8:00am Welcome and Managing Your symposium Experience
8:15am Clinical Trials in Mitochondrial Disease: Bringing Consensus to Treatment Confusion- by Dr. Gerald Vockley.
8:15am AACT and Adult Gathering
9:30am Break
10:00am Latest Concepts in Mitochondrial Disease- by Dr. Gerald Vockley.
10:00am Child- IHP, 504 Plan and IEP- What’s the Difference?- by Donna Noble, Med.
11:15am Child- Palliative Care and You: Be Not Afraid- by Dr. Sarah Friebert.
11:15am Adult-Pain management in Adults with Mitochondrial Disease- by Dr. Steve Lobel.
12:30pm Lunch
2:00pm Teen Talk (informal round table)- by Dr. Amy Goldstein and Russell Saneto, DO, PhD.
2:00pm Clinical Autism/Mito- Special Mito/Autism Ask The Mito Doc Panel- by Dr. Bruce Cohen; Richard Haas, MB, Bchir; Dr. Sarah Spence; Dr. Roberto Tuchman, FAAN, FAAP; and Dr. Pauline Filipeck.
2:00pm Adult -Ask The Mito Doc Panel- by Dr. Sumit Parikh and Dr. Michio Harano.
2:00pm Child- GI issues and Dysmotility by Dr. Richard Boles.
3:00pm Adult SS Disability Process and Estate Planning by Beate A. Pohlig, Esq.
3:00pm Providing Nutrition Support: From Oral to Enteral and IV by Deborah Pfister, MS, RD, CNSD.
3:00pm Teens- Exercise and Nutrition by Joe Wise and Mark Tarnoplosky, MD, PhD, FRCP.
4:00pm Care Taker Workshop by Lynne A. Wolfe, MS, CRNP, BC; Larry Lynch, LCSW.
4:00pm Fundraising to Support UMDF Mission
4:00pm Teens- Informal Social Gathering
6:00pm Cash Bar Reception
7:00pm Banquet Celebration, Awards Ceremony, and Entertainment

Saturday Schedule:
7:00am Breakfast
8:00am Clinical Autism/Mito- Primer on Autism by Geri Dawson PhD.
8:30 am Exercise - A Practical Approach for All Ages by mark Tarnopolsky, MD, PhD, FRCP.
8:30 am Recognizing and Overcoming Cognitive Issues in Mitochondrial Patients by Lisa A Young, PhD.
8:45am Clinical Autism/Mito primer on Mitochondrial Disease Dysfunction by Douglas C. Wallace, PhD.
9:30 am Clinical Autism/Mito Genetics of Autism and Mitochondrial Disorders by Dr. Matthew Slate and Robert Naviaux.
9:30am Adult -Palliative Care and You: Be Not Afraid by Dr. Sarah Friebert.
9:30 am Child- Behavior Management and Education for the Mitochondrial Child by Chris Davidson, PhD.
11:00am Clinical Autism/Mito- Epilepsy in Autism and Mito Disease.
11:00am Blogging and Journaling as Therapy for Patients and Families by Suzanne Perryman.
11:00am Holistic Approach to Manage Mito by Dr. Amy Goldstein; Amanda Kilinger, MT-BC Chris Williams, DC; and Linda Shelton.
12:00pm Clinical Autsim /Mito- Screening, Treatment, and Evaluation of Mito by Dr. Bruce Cohen and Richard Haas, MB.
2:30pm Hot Topics in Mitochondrial Disease
2:30pm Clinical Autism/Mito- Neuroinflammation in Autism and Epigenetics in Autism- by Dr. Carlos Pardo and Dr. Carolyn Schanen.
4:00pm UMDF National Updates and Closing
4:30pm Clinical Autism/Mito- Clinical Panel Discussion.

“The Doctor is In” program gives families a 15 minute informal opportunity to meet one on one with the specialists in attendance. The questions asked during the “Ask the Mito Doc Panel” are pulled straight from the attendees questions. So, be sure to mail your question in with your registration form.

The JW Marriot Camelback Inn Resort , in Scottsdale, Arizona is offering special rates of $149.00
for attendees. The cost of the Mitochondrial Medicine 2010 conference is $225.00 for UMDF Energy members or $300.00 for non-members.

To inquire about the scholarships available for those with financial hardships, call 1-888-317-UMDF or visit the UMDF web site here.

Special Needs Summer Camp

2010-04-30T10:58:00.000-07:00

There are over a million special needs children that attend summer camps each year. I was amazed to see just how many “specialty” camps were out there when I started researching special needs camps. There are camps that integrate special needs campers into the total camp population (mainstream.) There are also camps that cater to specific need, diagnosis, physical ability, mental ability, etc..

Physical, medical, and mental disability is no longer a barrier to special needs children attending a camp. Aspergers , autism, asthma, burn children, cancer, CP, cystic fibrosis, developmental disorders, diabetes, dyslexia, hearing impaired, HIV, ADHD, muscular dystrophy, tourettes, spina bifida, visually impaired, etc..

Most parents of special needs children are extraordinarily protective of their little one, and rightly so. However, before you close you mind to the idea of summer camp, think of the benefits for your child- independence, confidence building, activity and exercise outlet, and opportunity to interact and create friendships with peers and alike special needs children.

Resources for finding a camp:

KidsCamps.com
MySummerCamps.com
cshcn summer camp directory
campresource.com

When considering what camp best suits your families needs, make a list of questions, concerns, and desires.
For example- does the camp have staff that is certified, is the camp is accredited (ACA National Headquarters 800-428-CAMP); does the camp meet your child’s specific dietary, physical and mental needs; etc..

If cost is an issue, you can contact local charitable organizations, religious charities, ethnic charities, specific disease organizations, and fraternal organizations. These organizations often sponsor a child to attend a special needs camp.

Febrile Seizures in Children

2010-04-28T09:08:00.000-07:00

Approximately 1 in 25 children will have at least one febrile (fever) seizure. More than one-third of these children will have at least one additional febrile seizure.

Febrile seizures are convulsions that typically occur when a child’s rectal temperature is above 102 degrees Fahrenheit. Rectal temperature is 1 degree higher than an oral temperature and one degree lower than a axillary (under the arm) temperature. In other words-- if an oral temperature reading shows 101 on the thermometer, then a rectal temp would be 102 and an axillary temp would be 100. The most accurate way to take an infants temperature is rectally. The seizure is a response to a sudden rise in body temperature. It is the sudden spike in temperature, not how high the fever reaches, that actually causes the seizure. Because a child’s temperature can spike so suddenly, sometimes the febrile seizure is the first sign that the child is even running a temperature or sick. Febrile seizures can occur at any time during the course of a fever, but are most common within the first 24 hours of fever.

The child most commonly has some sort of viral infection or illness that causes a fever, but more serious central nervous system infections should always be ruled out. Meningitis, a life threatening inflammation of the brain and spinal cord, causes less than 0.1% of febrile seizures, but should always be considered. It is common for children to run rapidly spiking temperatures after receiving immunizations, so the immunizations can indirectly be the culprit. Children rarely have a febrile seizure before the age of six months or after the age of five.

One third of children that have a febrile seizure will have at least one additional febrile seizure. The risk factors for recurrence include: onsetbefore 18 months, shorterduration of fever before the seizure occurs, a family history of febrile seizures, and having an initial complex febrile seizure- (defined below.) Genetic and familial factors may increase susceptibility to febrile seizures, but these studies are inconclusive.

Continue to read about:

General symptoms of a febrile seizure

The difference between complex and simple febrile seizures

What to do when the child is having a febrile seizure

Treatment

Outlook for a child that has a febrile seizure

Now This Is What A Real Doctor Looks Like: Dr. Sean Daneshmand

2010-04-27T08:30:00.000-07:00

Dr. Sean Daneshmand embodies everything that a doctor should be.

Medical crisis’s are a time of great emotional, physical, and financial anguish. Medical professionals often overlook or ignore all the elements between providing care and receiving payment. But, not Dr. Sean Daneshmand, an obstetrician specializing in high-risk pregnancies.

CNN tell the story of Veronica Pacheco who was put in a coma at 24 weeks pregnant because of a positive H1N1 test. Six weeks later, the fetus was in distress and had to be taken by emergency C-section. Noah Pacheco weighed less than three pounds when he went to the neonatal intensive care unit (NICU.)

Premature babies, like Noah Pacheco, and sick babies often stay in the NICU for weeks to months. The NICU may be hours away from the parents’ home. This babies are too medically fragile to be brought home….yet, the mother is released from the hospital shortly after birth. The parent(s) then must face the traumatic financial and emotional stress of making frequent trips to the NICU. Life, albeit turned upside down, still goes on….the parent(s) still have work, other children, living expenses, etc… while trying to figure out how to spend as much time as possible with their premature infant in the NICU. The Pacheco’s needed help, and they found it through Dr. Daneshmand.

Finish reading how Dr. Daneshmand is helping premature babies and their families HERE

New Hope For Children With Cerebral Palsy (CP)

2010-04-24T18:30:00.000-07:00

Those that suffer from neurological disorders such as- multiple sclerosis, cerebral palsy, spinal cord injury and amyotrophc lateral sclerosis (ALS) may benefit from cutting edge cell transplants.

There are unique cells that support and surround the neurons in the nose. They are known as olfactory ensheathing cells or OEC’s. OEC’s have the ability to regenerate and they are relatively easy to obtain. These factors make them prime for transplantations to repair some lesions in the central nervous system.

The latest OEC research is related to cerebral palsy (CP). CP is a neurological disorder that appears from infancy to early childhood. CP is essentially a class of brain lesion caused by abnormal development, injury, etc.. It has permanent effects on muscle movement of the child.

The issue 19(2) Cell Transplantation publication contains research from transplanted OEC clinical trials done in China. 33 children and adolescents with CP were involved in the study. According to the research, 83% of the children had abnormal radiological findings. White matter damage or shrinkage, tissue loss, inadequate or delayed myelination, glial scars, etc.. were observed.

OEC’s were injected into a key location in the frontal lobes of the brain- ie- “Key Point for Neural network Restoration (KPNNR)." The theory being that the injected OECs would produce Schwann cell-like myelin sheaths around demyelinated axons.

The results of the study are amazing, despite the small sample size of the research. Dr. Huang, concluded OEC KPNNR transplantation may be effective for functional improvement in CP children. "Our results showed that transplanting OECs into CP patients could improve the neurological function of the patients and did not cause significant side effects. The procedure may be a plausible method to treat this as yet incurable disorder."- Dr. Huang.

Read issue 19(2) Cell Transplantation publication here

The Abbie Dorn Story: Brain Damaged During Child Birth And Denied Child Visitation

2010-04-24T06:56:00.000-07:00

As I read Abbie Dorn’s story, I was eerily reminded of Terri Schiavo.

Many of you may remember the Terri Schiavo case. The seven year battle between Terri’s parents and her husband was heart wrenching to watch. The husband wanted to remove Terri’s feeding tube because he felt that she would not wish to continue life-prolonging measures in her vegetative state. The parents fought tooth and nail to prevent Terri‘s life sustaining feeding tube from being removed, but eventually lost their battle on March 18th, 2005. Terri died 13 days later.

Abbie’s story is also a battle of will between her parents and husband. Abbie gave birth to triplets. Shortly afterward, she began to bleed and went into cardiac arrest. Her brain was deprived of oxygen for about 20 minutes while medical staff tried to resuscitate her. Abbie was left unable to speak or move from the brain damage.

As if what happened to Abbie was not traumatic and heartbreaking enough, now she (via her parents) are in a legal battle with her ex-husband over visitation rights for the children.

Read the rest of Abbie Dorn's Story and watch a YouTube video.

Sibling Adjustment to A Special Needs Child

2010-04-23T09:19:00.000-07:00

It is often very difficult for the siblings of special needs children to cope with all that goes along with having a special needs child in the family. Special needs children require an extraordinary amount of attention, care, love, devotion, and share of the family income. This can create difficult and often conflicting feelings for the unaffected sibling such as:

Fear of the special needs child dying.
Jealously, anger and or resentment that the special needs child gets a larger share of family resources and attention.
Anger over lack of attention or share of responsibility.
Anger over not being able to go places and do things because the special needs child can’t.
Embarrassment over the physical and mental differences of the special needs child.
Guilt over the above feelings.

Sibling rivalry isn’t uncommon, but when one child is labeled as “normal” and the other is “special,” it inherently creates feelings that are emotionally disruptive and detrimental to the family unit. Parents need to be astute on how the siblings are coping with having a special needs sibling.

Watch for the warning signs that your child might not be adapting and coping with having a special needs sibling:

Eating and sleeping changes.
Frequent medical complaints- stomach ache, headache, etc..
Hopeless feelings or comments.
Perfectionism.
Lack of concentration.
Lack of self -esteem.
Depression or speaking of hurting themselves.
Loss of interest in activities or anger over inability to partake in activities.
Frequent bouts of crying or worrying.
Withdrawal from the family unit.
Speaking of or actually hurting the special needs child.

The last warning sign is very important. It is very easy for jealously, anger, and resentment to turn into violence, especially if the warning signs that the child isn’t coping well are ignored. Speaking with the family physician, seeking professional counseling, and joining support groups can be very helpful. Support groups that involve the entire family can be a great outlet for siblings to talk with peers that also have a special needs child in the family. Everyday friends that don’t have a special needs child in the family often do not understand, much less relate, to the pressures and feelings of being a sibling to a special needs child.

Some great resources that may help siblings cope and express their feelings constructively, family adjustment, and parents are:

The Sibling Support Project.
The Winds of the Hurricane: Siblings in the Storm of Illness, by Joan Fleitas.
SuperSibs!
Siblings for Significant Change
It Isn't Fair! Edited by Stanley D. Klein and Maxwell J. Schleifer
Living with a Brother or Sister with Special Needs: A Book for Siblings, by Donald Meyer and Patricia Vadasy.
When Madness Comes Home: Help and Hope for the Children, Siblings and Partners of the Mentally Ill, by Victoria Secunda.
Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, edited by Donald J. Meyer

I don’t want this post to seem all “negative.” Siblings of special needs children may often need help adjusting. However, studies have shown that kids that grow up feeling positive about their special needs sibling, are more likely to develop qualities like- patience, kindness, tolerance for differences , compassion, helpfulness, empathy, dependability, loyalty, etc.. in adulthood.

What State You Live In Matters For Special Needs Families

2010-04-20T14:54:00.000-07:00

Many people do not realize the fiscal burden of caring for a handicapped child. Even with private insurance, SCHIP, or Medicaid, a special needs child usually equates to higher medical expenses for the family. This is especially true for low -income families that spend a disproportional share of their income on their child’s health care. The financial hardship not only has a negative effect on the child getting the care they need, it also effects everything from family structure to meeting siblings needs.

Every family with children is going to have out of pocket medical expenses, but where a child without medical problems may have a cold per year and see a pediatrician occasionally, many special needs children have multiple bouts with illness per year and become a decoration in their doctors’ office. The gas, lodging, and meal expenses while traveling to see specialists can add up quickly. Modified housing and vehicles, adaptive equipment, adaptive toys, special clothing needs, incontinence, respite services, therapy, etc… all puts an added cost on families that are often struggling to hold on to their sanity as is.

State and Federal representatives continue to ignore this problem, despite an overwhelming amount of supporting research. Medicaid and SCHIP programs need to be strengthened to reduce some of the burden families with special needs children shoulder. Instead, with state budget shortfalls and a steadily increasing federal debt, cutbacks to these programs are compounding….not helping special need families.

A recent study in the journal Pediatrics found that: 61% of all low income special needs families reported having some out-of-pocket health care costs for caring for their children with special needs. Of these, 30% reported yearly expenses of $250-$500, and 34% exceeded $500 for the year. Breaking it down, the percentage of low-income families who have out-of-pocket costs for caring for their special-needs children varies greatly from state to state. For example 33.5% do in the District of Columbia compared to 84.4% of Utah families. So, where you live really does matter when it comes to how 'good' the services are.

Find out where your state ranks with financial burden here.

Undiagnosed Diseases Program

2010-04-20T14:02:00.000-07:00

National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases Research (ORDR) and the NIH Clinical Center has organized an Undiagnosed Diseases Program in Bethesda, Maryland for patients that have a disease that has eluded their primary care physician(s) or have a rare disease. The program considers a rare disease to be one that has a prevalence of less than 200,000 U.S. affected individuals. This is a free program, and for those that qualify, travel, meals, and lodging may be paid for.

The program uses a combination of medical and scientific resources to achieve two goals:

* Provide patients with answers to mysterious conditions that have eluded diagnosis.
* To advance medical knowledge about rare and common diseases.

Medical specialists from areas such as: genetics, cardiology, dentistry, oncology, endocrinology, dermatology, rheumatology, immunology, mental health, nephrology, hematology, ophthalmology, neurology, laboratory medicine, pain and palliative care, bone disorders, immunology, primary immunodeficiency, pathology, pulmonology, primary immunodeficiency, internal medicine, pediatrics and hepatology participate in the program.

Read more about the program here

What is Mitochondrial Disease

2010-04-20T13:57:00.000-07:00

It is estimated that 2 in every 4000 people were either born with or have been diagnosed with mitochondrial disease. Despite it’s prevalence, there is still much that is not known about the disease and relatively little awareness.

First, lets get to know what the mitochondria are and what they do. Almost every cell in the human body have tiny organelles called mitochondria, commonly referred to as the “power house” of the cell. There are hundreds sometimes thousands of mitochondria in a single cell. Red blood cells are the only cells that do not contain mitochondria. Mitochondria are responsible for converting the food we eat into a type of energy for the body called ATP. This accounts for 90% of our energy. Therefore, the tissues with high demands for energy, such as muscle, heart, brain, and eye, are particularly vulnerable for mitochondrial defects. Nerves also have a high energy demand .

Mitochondria are the only cellular organelles that contain their own DNA and they are passed from mother to child. MtDNA defects are maternally passed. However, mitochondrial disease can also be sporadic from either environmental toxins or certain medications. Spontaneous mutations can also be the cause of mitochondrial disease. Defects in the nDNA can be inherited from either parent during the fertilization process.

When someone says they have mitochondrial disease, it is really more like someone saying “I have a headache.” That could be a stress, sinus, migraine, etc.. headache. Multiply that analogy by thousands to understand Mitochondrial disease. There are forty specifically named mitochondrial diseases and many more that have yet to receive a name, been applied to text, or have a diagnostic test. The signs and symptoms of vary according to the degree the mitochondria are defected, what mitochondria are affected, and exactly how they are affected. Each specific mitochondrial disease has it’s own set of possible and typical symptoms. The severity of the symptoms are also affected by these factors. Symptoms vary from person to person and range from mild to fatal. Even doctors that specialize in mitochondrial diseases are often puzzled by the great diversity in symptoms.

Leigh Disease/Syndrome, for example, is a progressive neurometabolic disorder that is fatal. The child often appears normal at birth, but by two years old regresses back to the an infant state of functioning. Symptoms include: loss of basic skills such as sucking, head control, walking and talking, irritability, loss of appetite, vomiting, and seizures. Latter the child develops heart, kidney, vision, and breathing complications. Whereas, Kearns-Sayre Syndrome is a slowly progressive multi-system mitochondrial disease. The symptoms begin with dropping eye lids that progress to paralysis of eye movement, retina degeneration, cardiac conduction defects, elevated cerebrospinal fluid protein, and uncoordinated movements. Death usually occurs by thirty years old. These are just two of the multiple mitochondrial diseases, but you can see how the symptoms vary.

Diagnosis is not an easy task. This is one of the many reasons it is so important to be referred to a specialist. From there, an EEG, brain MRI, metabolic tests (blood/urine/spinal fluid), clinical observations, and muscle biopsy are the usual diagnostic tools. If blood tests, clinical observations, and MRI suggest mitochondrial disease, a muscle biopsy is generally the next step. There is much controversy about fresh vs. frozen muscle biopsies. Some experts say that frozen biopsies are the only reliable way to isolate the mitochondria for analysis. Unfortunately, there are only a handful of facilities in the United States that are capable of performing a fresh muscle biopsy. For one of the mitochondrial diseases, complex V, fresh muscle tissue is the only way it can be analyzed.

At this time, there is not a cure for any of the mitochondrial diseases. All of the treatments are based on diminishing the symptoms and slowing the disease process. Again, effectiveness of treatment is based on which type of mitochondrial disease, etc… Some may improve greatly and notice a decline in symptoms, while treatment in others may be totally ineffective. This can even be said within the same category of mitochondrial disease because each person has a unique biochemical makeup. Also, without isolating which specific mitochondrial disease a child has it can be dangerous to give some of the therapies listed bellow. For example, in electron transport chain disorders a high fat diet is beneficial, but in OXPHOS disorders a high fat diet can be fatal. With that in mind, some of the treatment approaches are: cofactors and vitamins, diet, and multi discipline therapy. Co-Q10, B Vitamins, Vitamin E, and L-Carnitine are some of the common vitamins and cofactors. Avoidance of extreme temperatures, physical therapy, speech therapy, occupational therapy, frequent small meals, and avoiding fasting are common assignments. Diets specifically geared by a metabolic specialist such as: high fat, low fat, low carbohydrate, etc. can be beneficial.

In conclusion, mitochondrial disease is complex with many tiers to it. In recent years it is gaining some recognition in the medical world, but public recognition of this disease has a long way to go. If you say “autism“, most everyone has a general idea of what, why, and how…..but you say “mitochondrial disease” and people cock their head sideways in puzzlement. As the mother of a child with possible mitochondrial disease, I know first hand of this bewilderment. Even most general practicing doctors often ask me “and what is mitochondrial disease?” The lack of reliable conclusive testing is why the “possible” is included when I say my child has mitochondrial disease. All of the clinical symptoms point to mitochondrial disease, but the MRI’s, muscle biopsies, etc… have not been able to isolate a specific mitochondrial disease in my daughter.

Organizations like UMDF, David P. Campbell Foundation, UCSD’s Mitochondrial and Metabolic Disease Center, NORD, and Mitochondrial Disease Action Committeeare making great strides for public awareness, research, cures, and improving diagnostic capabilities.