source
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.
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.


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. 

                                                                              source
 
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

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. 

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.

                                                                        source

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

                                                                    source

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.




                                                                     source
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.

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!

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."

source

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

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

 

 

 

 

 

                                                               source

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

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.

 

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:

1. Baking
2. Boiling
3. Microwaving
4. 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.

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.

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

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.



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. 
  

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

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

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.

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.   

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

 

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 

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

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.
    
                     
       
     

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.

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