Anyone has a child with Spastic Diplegia?

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I have a 3 yr old daughter with Spastic CP and Hydrocephalus and I havent met anyone with a child with spastic CP before. My daughter Mia doesnt walk, or crawl or stands on her own she have a severe high muscle tone in her arms and legs and but at the same time she has low tone in her back so she cant control her back to sit by herself



Does anyone have a child with this type of condition? Have they been able to walk? How long did it took to them to start walking or sitting down?



Ive heard about Botox but im not sure if its good or not for the kid..

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Sommer - posted on 01/27/2010

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My daughter has spastic, she just had surgery called Selective Dorsal Rhizotomy. The surgery took away the spasticity in her legs and now we are doing therapy daily to help strenghten her muscles. Before this she could not sit unaided or walk. We can already see a difference in her sitting. Her back is so straight now.(surgery was Jan. 7). There is still no guarantee she will walk, this just gives her a better chance. If anyone would like more info on this please feel free to contact me.

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Khinds - posted on 03/12/2014

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Our son has spastic diplegia. He is effected in his legs and left arm due to a platelet incompatibility. Tie caused brain hemorrhage inutero and currently has a VP shunt due to the hydrocephalus. He is now 7. We have used Botox and now he is taking Baclofen. Unfortunately Botox will hit a point to that it will no longer work. We are going to get a gait analysis to determine what to do next. He may need hip surgery or we need to consider the Rhisotemy. He uses a walker but is really starting to scissor more than ever.

Anne - posted on 02/17/2013

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Hello, my child was near 3 before he walked. He was given botox in both his legs muscles and later that night, he took 3 steps. I fully recommend botox.

Melissa - posted on 02/25/2010

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I have a 3 year old boy who also has spastic cp. My son doesn't walk on his own but he does army crawl. He is high tone is his legs and right arm and low tone in his trunk. He sat about two years and sometimes that is still hard for him. He will probably get Botox for his tight ham strings and I am big on getting that for you. I have only heard good things about it and read some where that 80% of children who receive it have benefited from it.

Mya - posted on 01/28/2010

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My daughter does as well! She is 11 years old! She was born weighing 1lb 6 1/2oz and only 12 in long or short. She had a hemorrhage on her brain grade IV being the worst. Later when it stopped and turned to hydrocephalus then they could do something. She has a VP shunt to help with this. A G-tube she no longer needs but we use for meds. She is "healthy", but has long term/permanant brain damage. She has Cerebral Palsy. She is a very happy little girl and has been in school since she left 1st Steps. SHe is in a class called Lifeskills. It is such a wonderful thing. Letting her go to school and be with children her own age and with similar disabilites. She uses a wheelchair for her trasportation. At one point she was using a reverse K walker, but her hip has dialocated and it is too painful for her to weight bare. We are currently gettting Botox injections for her hips. She receives them 3-4 times/ year. Usually every 4-6 months. They can put a little sticker like thing that puts out an electrical shock. They say it feels like when you get a shock when touching another person. Not painful at all. Then they will spray with a numbing spray and use a needle to inject Botox where it will be most helpful. It really helps. It kills that nerve, but it grows back in 4-6 months. You will need to work hard with therapy so when it does grow back, it will not be tight. Over time it seems to become tight and more Botox may be necesary.
I hope I am of some help. I have had a lot of experience in her 11 years. I was also afraid of having more children, thinking they may have it as well, but we had 3 other children after her and they are all perfectly healthy! We waited 6 years though!
My daughters name is Hailey and mine is MYA, :) Feel free to ask me anything you like about your little Mia!
God Bless!

Jana - posted on 01/28/2010

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My daughter is 10 an has spastic. She didn't walk till she was almost 2, however was slow when she started. Nowshe can run and jump and play. Granted it is not as good as the other kids, but she still leeds an active life. Our only problem is learning disablities. She has a hard time grasping things.

Coralie - posted on 12/29/2009

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hi there we found out that our 2yr old daughter Periventricular Leukomalacia and Cerebral Palsy , the cp side of thing she has spastic, but dakota can crawl but not stand unadied or walk, she can sit up and move about by crawling, we have been told there is only a 2% chance she will walk on her own which has been a shock to me and her dad, we have also been told about botox and we are looking into it hope this helps xxx

RENEE - posted on 12/18/2009

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Hi there Sharkiar is 3 she has spastic diplegia she also cant walk or crawl .One thing that i have learnt about cp is not one child is the same there fore they are unique as we know.Does Mia have physio sessions or any help from the cp league hope to here from u soon .
Renee

Bobbi - posted on 11/29/2009

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My daughter eventualy had IBP theropy. The tone was to high in her legs and she was crossing her legs which started pulling her hips out of socket so I had a baclafen pump put in and it has delayed her from having a life threating hip replacement surgery.Her tone now is so much better and no side effects that the oral meds have.Im here if you have any questions

Mindy - posted on 11/27/2009

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My son has it. he is 15 months. We are in early intervention trying to teach him how to develop more control. They are optimistic that he will walk with or maybe without supports.

Sarah - posted on 11/06/2009

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My 9 year old son has spastic diplegia cp. My son was exactly as you descibe at that age. He was 4 when he finally sat on his own and could confidently walk with his k-frame walker. When my son was offered botox at the age of 6 I was unsure if this was the right way to go for him but now I know it was and I would not go back on my decision. My son now walks alot more steadier with his frame and can even take a few steps by himself. Although his legs are sore for a couple of days after the benefits outweigh that completely. He is so much happier and more confident in himself. I would recommend botox! It only lasts for 6months so if it has no effects it doesnt have to be done again.

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