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Old 06-27-2009, 10:52 AM   #1
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Kristy0641 HB User
Smile 5 Year old Son Has Spastic CP

My son Dakota is 5 years old and has Spastic CP, he is delayed in several areas, and had seizures at birth but none since 6 weeks of age. He does not walk he only crawls, he loves to sit in the W position. He has been taking baclofen liquid since he was about 6 months old. Has anyone else took that medicine for that long? At first i saw it working but now that he has had it for so long i don't see any help but when i saw something to the doctor all they do is up it. He gets 10 ml 3 times a day now.
Dakota also has gotten botox in his legs about 5-6 times now and they seem to help but for only a couple weeks,we have done botox and serial casting with no help at all, so i am not sure what the next step will be for him. I am at a stand still right now i feel like i am not getting anywhere and the older he gets the worse he gets, he is so stiff some days just changing his shirt is a task. He will start kindergarten in August and i pray that he will do good. He is a very fearful and shy little boy that dont like strangers or being in strange places.
I would love to hear from other parents or people who have been or are going through what we are. I feel so lost sometimes.

 
Old 06-27-2009, 02:20 PM   #2
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jammyslisa HB User
Re: 5 Year old Son Has Spastic CP

Kristy,
My son who has milder cp than your son is grown now, but I teach children with varying degrees of CP. Are you receiving services through the school system and does your son have an IEP yet? One thing that might help if you don't have one already is to make an appointment with a physiatrist. I know one of my students goes to one and she has been a tremendous help in knowing what types of meds, therapys and equipment to use. How are your son's cognitive abilities?

Lisa

 
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Old 07-19-2009, 07:18 AM   #3
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open_the_door HB User
Re: 5 Year old Son Has Spastic CP

My son will be 5 and has CP diplegia. He started walking independently at 3 and a half. Before then he had to use a walker. He has been in O.T. since he was 4 months old. He started with P.T. at around 1 year of age, and then speech at 16 months. He was on a waiting list. He did start birth to three at 2 years of age(didn't know about it till then). There are alot things out there. This is a great message board for questions and answers. My son took baclofen for a short time. It made him too loopy so we stopped. He gets botox every 3 months, primarily in his hamstrings and adductors. He wears ankle AFO's. At night he wears knee immoblizers and night boots. He now has P.T. two times a week(one in the pool one on land. He has O.T. once a week, and speech once a week. He does horse therapy once a week. As soon as school starts, he will have P.T. half an hour once a week, O.T. half an hour once a week, and speech for half an hour once a week. He has an IEP which I will have updated in September since he will need new goals. We have been truly blessed that our insurance covers alot of the above otherwise we couldn't do it. He is progressing very well. He has his days. He was diagnosed with nephrotic syndrome in November of last year, and it really slowed down his progress in many areas. He is now off all meds, and is doing better. He does have constipation problems. I give him miralax every once in awhile but I try to keep it away from him.

He will get taller AFO's in about 2-3 months because they will try a new kind with hinges. He also saw a physiatrist last month. I gave him a copy of all of my son's x-rays. The physiatrist is really pushing a baclofen pump but we are not ready for that yet. He also wants to start him on another med. which we have to have the nephologist approve. There is always something and I have 3 other kids in which one has special needs too. To say the least, I'm certainly not bored.

 
Old 07-27-2009, 02:40 PM   #4
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savien HB User
Re: 5 Year old Son Has Spastic CP

Quote:
Originally Posted by Kristy0641 View Post
My son Dakota is 5 years old and has Spastic CP, he is delayed in several areas, and had seizures at birth but none since 6 weeks of age. He does not walk he only crawls, he loves to sit in the W position. He has been taking baclofen liquid since he was about 6 months old. Has anyone else took that medicine for that long? At first i saw it working but now that he has had it for so long i don't see any help but when i saw something to the doctor all they do is up it. He gets 10 ml 3 times a day now.
Dakota also has gotten botox in his legs about 5-6 times now and they seem to help but for only a couple weeks,we have done botox and serial casting with no help at all, so i am not sure what the next step will be for him. I am at a stand still right now i feel like i am not getting anywhere and the older he gets the worse he gets, he is so stiff some days just changing his shirt is a task. He will start kindergarten in August and i pray that he will do good. He is a very fearful and shy little boy that dont like strangers or being in strange places.
I would love to hear from other parents or people who have been or are going through what we are. I feel so lost sometimes.
weve just been told our son has cp, im a wreck and dont know what the future will bring..........

Last edited by savien; 07-27-2009 at 02:41 PM.

 
Old 02-11-2010, 07:22 PM   #5
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CARYNJ HB User
Re: 5 Year old Son Has Spastic CP

Quote:
Originally Posted by Kristy0641 View Post
My son Dakota is 5 years old and has Spastic CP, he is delayed in several areas, and had seizures at birth but none since 6 weeks of age. He does not walk he only crawls, he loves to sit in the W position. He has been taking baclofen liquid since he was about 6 months old. Has anyone else took that medicine for that long? At first i saw it working but now that he has had it for so long i don't see any help but when i saw something to the doctor all they do is up it. He gets 10 ml 3 times a day now.
Dakota also has gotten botox in his legs about 5-6 times now and they seem to help but for only a couple weeks,we have done botox and serial casting with no help at all, so i am not sure what the next step will be for him. I am at a stand still right now i feel like i am not getting anywhere and the older he gets the worse he gets, he is so stiff some days just changing his shirt is a task. He will start kindergarten in August and i pray that he will do good. He is a very fearful and shy little boy that dont like strangers or being in strange places.
I would love to hear from other parents or people who have been or are going through what we are. I feel so lost sometimes.
My son had the surgery almost a year ago. The surgery went well; extremely painful. Long story short my son has not been the same health wise. One, he has been taking too much Baclofen and I am weening him down now from 50mg to 20mg. Causing health problems. Also, the FDA has come out with new warning for Botox in children with special needs this past summer of 09'. My son had all those symptoms this past summer. Plus there are new studies being done that think that Botox is stored in the Brain Stem and can come back out and cause health problems. You need to read the new warnings from the FDA for special needs children and spread it around. Proven through Lab Rats that Botox can be stored in the brain stem. My son will never have botox again for his CP. He had it for 3 to 4 years every 3 months. He is almost 8 years old.

 
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