11 year old boy can't even stand --CP case.

Dear sir,

i recently posted a problem of my Nephew suffering from Cerebral Palsy issues. I am pasting it here again.

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Dear sir,
I have a sister in India and who has a boy named Gowtham  with Chronic(I believe)  Cerebral Palsy. Believe me since 11 years Gowtham's parents had tried a lot get him to the normalcy. Spent around $50K. Visited soo many specialists. But still i believe they are far from the basic objectives.

Boy basically even can't stand. He is good in understanding things and responds to what the people talk around him. But he can't walk, stand all by him self  and very slow in  learning. His mom has to carry him where ever they go.

I would really appreciate if there is a good doctor that would like to study his case & help us get out of this agony. Obviously my sister/family need some kind of ray of light for help as it is really dark and they are  struggling in their lives.
thanks very much in advance.

-Raghu & family.

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Hello Raghu. I am new here, but registered because of the CP forum. I have a daughter with CP and she is 10 years old. If your nephew understands and communicates as well as you explain, then I doubt it is chronic CP. There are children in my support group who are wheel chair bound and can not speak or communicate.

My daughter has been on a few meds over the past 4 years. In hope to make everyday life easier for her. Like holding a pencil or putting on her braces. None of them had made such an approvement to keep her on them for life so we discountinued them. BUT, the best thing that the doctors have ever done for her is BOTOX. It is injected in the calf muscles in two different spots on each leg (for my daughter). Hours later she was telling me she felt better. The next day she was walking around without her walker. Befor the botox she could only take 10 steps on her own, now she is taking 200 plus. All in one day. I have never ever been so happy in my life.

With that said. I am more scared now, because I am afraid she will fall. I have to watch her more. But she feels better.

It is important to know that CP can not be cured. The symptoms can be helped, but never cured.

My daughter was born premature and had a bleed in both sides of her brain. She was oxygen deprived for a few mintutes and 3 months of age and I have been told those are the reasons. I am just very thankful that her CP only affects her muscles and not other things. She is also deaf, and she is slower than most of the kids her age. But, CP has never slowed my daughter down. I also pack her everywhere. Well did. These past few days she has been enjoying walking.

May I ask, Other than the emotional pain that seeing their child suffering with CP is causing them, what else are they struggling with? Maybe they can find a support group or other families with children with CP around them? My best wishes goes out to you and them.

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hi caseyb26,

thanks for the reply & suggestions made.

My nephew will only understand certain small things but not to the level of his  age maturity. I made that comment  in comparison to his physical activities. Being a 11 year old kid who can't even stand on his own,  he expresses his likes & dislikes in food items.

For ex:- if he see some spicy food , he would say ba,ba,ba.. means he wants to eat that.

I really surprise, how he can think about eating his favorite food items wen he can't  stand on his own and his other muscles won't respond to the brain signals.(for walking, running, standing, taking care of obstacles etcc.).

One day he went to rest room crawling and opened the hot water fountain ( really hot!!) . he was there for couple of minutes until his skin got burnt. But he did not cry or scream.
He just made some funny sounds which we could not understand and we were in other room.. Felt Soo sad that he is in such a kind of poor condition.

i read  the CP cases  can't be solved but i was  +ve that with the doctors/specialists help, my nephew will grow do his things on his own. But looks like that is far from the truth.

i feel happy that your daugther is doing well. wish her & pray god to give all the strength to her to become a normal person.

some times i feel that for  kids with these problems., there should be a Universal platform for help.
wait for good things to happen.

-Raghu


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Hope i gave enough information on his condition. We will provide all the reports if you have any suggestions.

we want o consult some good doctors who will take his case as a challenge and my sister is really happy to reward the doctor as well.

lately my sisters family is struggling a lot to get some help for the kid.They really about Visited couple of experts but there is no good recovery for 11 years.

please advise. If you suggest to consult your good offices., my sister is willing to come to your place any no.of times.
thanks

awaiting reply.

[SamPCS]

Have you considered stem cell therapy or HBOT?  Geeta Shroff in New Delhi is doing a great job in helping people with these kind of diseases/spinal cord/brain injuries.

Some kids found doing good with HBOT too.  Again all these are trials which may be worth it.