Hi, My son was born after lot of complication. He was sent to NICU immediately after birth and spent one month there before getting dicharged. Due to lack of oxygen during his birth his brain cells got damaged and he had few convulsions at birth time. He was on Gardinal for next few months as Brain MRI & EEG was showing brain cell damange. After 5 months my son started getting jerks - 10-15 times a day. We met one Epileptologist who did EEG and found that my son is having "West syndrome" and started Valparin & 1/2 tablet of Sabril. Within 2 weeks all the jerks went away and it appeared that everything would become normal. After around 6 weeks the doc increased the Sabril dose to 1/4 - 0 -1/2 tablet. Although my son did not have any jerks but he was not showing any growth signs. He had very poor neck control, eye contact and body movement like rolling etc.
We are continuing this medicine (Valprin, Sabril, Brain Wise, B-Long and Liofen) for almost a year now but still the development of my son is very poort. His body muscles are still stiff and there is no eye contact yet. We are also taking him for 1 hour session with Occupassional Therapist daily still the development is very slow and muscles are very stiff. Only good part is that his neck control has become better, he has not had any jerks for more than a year now and he smiles both while sleeping and awake.
Can somebody please advise us regarding treatment of my son's CP. We don't know much about this disease and some of the doctors that we met told us that my son will ever be like this. Please help us with your suggestions and point us to good doctor in Pune/Mumbai (India) area.
I worked for a program in the US that helped families who had children with special needs/disabilities. If your child were here we would be able to evaluate and suggest and provide treatment to help your child become the best he can be and help you know how to work with him in his own home. I do not know if such programs exist in your country. I did find this site that might help.
Thanks. Right now we are taking help of one occupational therapist who is spending around 1 hour daily with my son. But this is a very long term thing, I am looking for some medical help. There are so many patients with CP but still there is no treatment available which can cure such babies.
Talk with ur child's pedatrician. There should be early intervention programs where u live. For instance, in Fl babies are provided with physical ,occupational, cognitive and speech therapy without charge up to three years of age. At that point they tranisitioned my child into a pre-school program in a reg. class. Im sure there is something like this available to you... I will do some research
When i mentioned Florida earlier, I was thinking u were here in united states, but guess what. U may have heard of this program. Its call the Ummeed Child Development Center. It is a non profit organization headquartered in Prune. It looks awesome Also, u may want to contact the Cerebral Palsy Association in Prune. Sorry. Ummeed is in Mumbia. Hope this is helpful
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