My first letter said that my 15 year old was being tested for ALS. That is just one of the hundreds of test this poor child has been thru. This was a healthy boy that played basketball, street hockey, cut the grass and ran around with the younger neighbor kids. He is now confined to our house unless he goes out for PT or the family takes him somewhere. It started back in late September/early October of 2006 we noticed his walking looked a little odd and then he started to trip and fall. By the beginning of November his hands started shaking. His doctor ordered an MRI of his brain which was normal and then from there he has had 2 spinal taps, 2 EMG's and dozens and dozens of blood tests. We have seen 3 different neurologists, (which I have to say have been wonderful) but it doesn't seem like we are any closer to finding out what is wrong with him. He can not walk without assistances, meaning at home we have to be with him while he walks with a walker and when he is at school he uses a wheelchair to get from class to class. He can not do anything by himself anymore. This child needs assistances when he wants to turn over in bed, he is so very weak. He has lost 10 lbs. since November so we are trying to put weight back on him with supplements. He has braces on his legs and has PT 2 times a week. The doctors have put him on Sinement for his shaking. He is scheduled for a muscle and nerve biopsies April 13th.
If anyone has any experience with this or any suggestions, please let me know.
Begging for help and answers.
Pat
If anyone has any experience with this or any suggestions, please let me know.
Begging for help and answers.
Pat
