Saturday, February 9th, 2008
What Have You Tried
We have tried so many techniques over the years. The TES unit - not successful for us and a pain to use. Multiple surgeries (10) at once just a year ago - that although a very difficult recovery - well worth it. Have you heard of any new techniques, techniques that were successful, or techniques that were just plain funny?
Did anyone see the article about the stem cells given to the two year old on NBC’s Today Show? Within a few days he was talking and now he hardly has any signs of cp. Has anyone seen any research on this?
I saw that episode as well. There is no proof at this time about stem cells and cp, but it certainly is interesting. I’ll be anxious to hear more about it.
Do you remember the adelie suit? I haven’t read or heard anything about this treatment for quite some time.
I do. The adeli suit was really popular in the 1990’s. I looked into it for Michael. The program is in Poland. They developed a special suit with elastic cords that is suppose to tell the body how to move. Kids are usually in the program for 4 weeks and receive 220 minutes of therapy a day.
Study’s have shown though that children receiving the same amount of therapy each day without the suit showed the same type of progress and it is really the therapy that caused the improvement, not the suit.
Is the time commitment for a rhyzotomy really that long with therapy? Can it be shorter?
The minimum amount of time I’ve heard is one year. I do know someone who did have the surgery, but did not follow up with therapy. There wasn’t any benefit to the child and the family was very disappointed. Our doctor was very upfront and would not even perform the surgery unless we agreed to the therapy. It wasn’t a fun time for; but when all was said and done it was well worth it. Michael was able to use forearm crutches functionally as well as move so much easier.
Others have experienced even bigger results, but each child is different.
We tried Hyperbaric Oxygen Therapy with our 2 year old daughter who has severe CP. She also did 2 hours of intense OT/PT everyday along with the HBOT, and she showed great improvement. Her head control and balance improved as well as her swallowing and speech. HBOT works similar to stem cells.