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!
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!
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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:
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.
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:)
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 @ firstname.lastname@example.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.
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.
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:
To donate to SMA:
To support legislative action:
Legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, The SMA Treatment Acceleration Act
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 (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.
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.
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:
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.
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.
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:)
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.
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.
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!
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 Child1:25 PM Posted In autism , deafness , dyslexia , early term birth , elective c-section , poor vision , preterm birth , research , special education needs Edit This 3 Comments »
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.
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
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:)
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.
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
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!