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Cerebral Palsy Message Board


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[QUOTE=Mamacrisp;4979752]Hi i was wondering if anyone can give me any insight my son has mild SD he is 18 months old and is walking nicely now he is wearing SMO's he is in PT OT and started speech today (he has 0 words only a "ra ra" babble)
i know CP can not worsen but more challenges come with milestones. i have heard or should say read a few stories where children walked at a young age and still ended up in a wheelchair
is there anyone that this has happened to if so can you explain it to me in detail
i am just so afraid
you look at him and you wouldnt even know he has this. hes a real trooper its hard to believe we have come so far in these long 10 months and that could all change and he could still end up "worse" (for lack of a better word)
thank you i hope to hear from you soon...[/QUOTE]

Hi, My daughter is 8 years old and has mild spastic diplegia. She wasn't diagnosed until she was 3 years old. She was a late walker (2 years old) but her father noticed that her gait was different than the other kids in day care. We took her to her pediatrician who said her walking was fine, but we insisted on a referral -- long story short she ended up with a CP diagnosis. But she started out looking almost normal.

We have followed all of the recommended treatments including regular PT and botox injections. We have just got news that she will need major multi-level surgery in a couple of years including a derotational osteotomy, hamstring and gastroc lengthenings and possiibly something to derotate the tibia too. Her mobility has decreased over time, so my fully independently walking 3 year old is using a walker to get by at 8 years old and we are told that she will likely end up in a wheelchair by the time she is an adult.

I am devastated and wish that the Doctors had told us this when she was originally diagnosed. The literature that I have read says that reduction in mobility is expected in most cases like ours.

I am sharing this, not to scare you but to help you to have realistic expectations for your child. I've been where you are and I wish that someone had told me the truth from the start. You will discover a strength that you didn't know you had and you will get through it.

The best part of this story is that my daughter is a bright and resilient child who has a fantastic attitude (she is my hero). She has bounced through all of the treatments that she has had and continues to have a positive attitude about everything. She doesn't know that she has any limitations, she just figures that she does things a little differently than her friends.

We will get through this and come out smiling, as I'm sure that you will.
Take care.
My 2 year old little boy has spastic diplegia and I came to this site hoping somebody that is older and has that condition can maybe shed some light for me on what it is like to grow up with it. We have been doing pt for about 7 months and though we have seen big improvements in our little boys mobility I wonder if his activity now will serve as a catalyst to the deterioration of his hip, knee, and ankle function. We were just prescribed baclofen and told he would be reevaluated in six months and given Botox injections in his calves and right hip. He can almost walk independently, he mostly has issues with balance, scissoring, and his right hip turning inward when he walks. I wonder if giving this drug to my kid is the right thing to do or if it's long lasting effects will outweigh the benefits. He isn't old enough to be able to clearly explain things to us so any insight from somebody who has walked a mile in his shoes would help us enormously. Thanks.
Have you checked into SDR vs. the pump and Botox? That's the route we went with our spastic diplegic son.





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