The Cerebral Palsy Network

Example Letter to your congressman

Dear Congressman Rogers,

I would like to commend you on all the great work that you have done and continue doing for our district. I am writing you to ask for help for my 4 year old son, Austin, and other children like him in our district and our country.   Austin is a beautiful and smart little boy who has Cerebral Palsy. He currently receives Physical therapy, Occupational therapy, Speech therapy and Assistive Technology/Computer training. It has been documented that, for a person who is disabled like my son, over $100 MILLION will be spent between the Government and their families for a lifetime to provide all of the medical necessities and the best quality of life.   We have recently found out about a new type of treatment which will help him greatly to recover his motor function. This treatment, Hyperbaric Oxygen Therapy, could cut his cost of living greatly.   I would love for you to find out for me why this treatment is having so much trouble getting funding for research and why the NIH and the FDA are not even looking at the documented cases where children have been helped.    Most of the Hyperbaric Oxygen research on the books today, come from the 1960¹s and 1970¹s and for some reason was just dropped. It is so very possible that if they had stuck with it and followed through that Cerebral Palsy could have been wiped off the face of the planet!!! Why can¹t we make up for it now and help our kids and all of our future generations???

  The FDA wants double blind studies to be done but the Government offers no funding for such studies. The double blind studies intentionally withhold treatment from half of the children in the study. This, in my book, is the epitome of unethical!!!! Once that this time is lost it is not recoverable!! The sooner the treatment is administered the better the results. The pure oxygen which is administered below sea level awakens the dormant brain cells and allows for better functioning. Thus, using Oxygen as a Drug. This in Mom¹s terms, but I'll attach some of the information that I have on Hyperbaric Oxygen Therapy for treatment of Cerebral Palsy/Brain injury. HBOT has been used for years in United Kingdom to successfully treat children with CP!! Why isn¹t our Government as anxious to help our children???

  So, where does this leave parents of disabled children??? Traveling great mileage to find a Hyperbaric chamber, with a Doctor, who will treat children with Cerebral Palsy. Paying out a large amount of money for a proven medical treatment not covered by insurance.   How do the rural people in your district come up with the $10,000- $15,000 for one round (a child can have over 3 rounds of treatment) of Hyperbaric Oxygen Therapy?? We are personally trying to set up a trust for Austin and doing what ever we can to raise the money so that he will not be deprived for a more ³normal² life.   Any suggestions that you can make for us will be greatly appreciated!!! Is there anyway that you can help all of our children to be able to breathe this miracle drug-Oxygen??? Please, help us get Hyperbaric Oxygen Therapy FDA approved to treat our children that are brain injured or have Cerebral Palsy and to become a completely reimbursable treatment for insurance to cover!!!

Thank you for your time and again thanks for everything that you do for southeastern KY. Please, help our children!!!

Sincerely,

Francie Roberson
Proud Mom to Jerad(6) and Austin(4, with spastic quadriplegia Cerebral Palsy)

Attachment: What is Hyperbaric Oxygen?

Hyperbaric oxygenation is the use of I00% oxygen at greater than atmospheric pressure. It is the same oxygen that we breathe normally (which is 19-21% of air). However under pressure, oxygen, a gas, adheres to all of the laws of physics. When pressure is increased, oxygen will be dissolved into any body fluid in direct proportion to the pressure (Henry's Law). More oxygen, therefore, may be dissolved in the bone, the urine, the lymph, especially the blood plasma and the cerebrospinal fluid (the fluid- that bathes the entire central nervous system). Hyperbaric oxygenation is a method of delivering extra oxygen into the body. It is not just the increased oxygen that is important, but that free molecular oxygen is made immediately available for metabolic use by the mitochondria at the tissue spaces in the body, where all life takes place.

Hyperbaric oxygen is a drug and is administered in a closed chamber and has a specific dose which relates to the depth of pressure. This is referred to as the atmospheric pressure absolute (ATA). Sea level is 1.00 ATA, with the partial pressure of 19-21 -percent of O'. The length of time of treatment, the pressure, the number of treatments per 24 hours and the total number of treatments all represent the "dose".

The ideal situation would be to take the brain injured newborn from the delivery room to the hyperbaric chamber to prevent/repair the damage immediately. With newer diagnostic techniques such as transcranial doppler, functional MRI and SPECT scanning, brain injuries can sometimes be detected at birth. It is at this time that the patient should be considered for treatment as is done in Mexico City and has been for many years in Russia and a British trial published in 1964 in The Lancet.

The safety record for hyperbaric oxygen treatment is excellent. In the United Kingdom, there have been 1.3 million hours of outpatient hyperbaric oxygen administered without incident. Certain outpatient centers insist upon myringotomy, i.e., tubes put into the ears of the children to equalize the pressure. We do not feel that this is necessary if the compression and decompression are appropriately done. In our experience, 1 out of several hundred children may require this. Ear inspection prior to and during the course of treatment is mandatory.

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Last updated 03/24/03

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