New here, hi!

Bruton8288 · March 2014

My name is Omi, I have been lurking for about a few days I am ready to introduce myself. My DS has be diagnosed with Hemiplegic CP. She has speech delays so we commute a lot with sign language when she gets frustrated if she can't express her needs/concerns. She is 2 yrs old & she will be getting botox injections on 4/15 to help with her right leg, from there do casting & get a brace. I am not going to lie I am scared. I would do whatever it takes to care for my little girl. She has been a fight from the day she was born prematurely. She does OT, speech & PT every week, we have seen a difference but is still a few months behind from where she need to be. Anyone child here has hemiplegic CP? Any advice would be great.

macchiatto · March 2014

I have a couple of friends and friends' kids who have CP but no personal experience with it myself. I also wanted to say welcome to the board though! I can understand being apprehensive; I hope the injections and brace really help your DD and that it all goes as smoothly as possible.

realisticdreams · March 2014

My 4yo has mild CP, right sided hemiparesis. She had a stroke before she was born and she started PT when she was 2 months old. We are not currently in PT because of her other issues that she has going on. Welcome!

MaxandRuby · March 2014

Welcome to the board! @Fredalina, the surgery you are referencing is (acronym) SDR. :-)

DS2, 4.5yr old, has CP. He was diagnosed as spastic quad but personally I think spastic di or triplegia or double sided hemiplegia is a better diagnosis. I consider him to be moderately affected. He was diagnosed at just shy of 10mos old and has had various therapies (speech, feeding, PT, OT, aquatic, hippotherapy) since he was 4mos old. Currently he receives PT, OT, and speech.

DS2 has had botox injections in both legs. I believe it was 3 or 4x total but I did not see a big enough improvement to keep going with it (some people do really well with it while others don't). What I can tell you is be prepared for much screaming and crying. The botox hurts going in. Do you know how many injections she is having (DS2 had 8 total per session). The injections go fast and his crying was done within 5min of the actual injections being done (long enough for me to calm him really). You can try distraction, I would advise to bring something for her to do during it; however, realize that once they start doing the shot the distraction won't work (we bring/brought DS2's Leap Pad). I am not trying to scare you but wanted to give you our experience and a possibility of what to expect. His biggest advancement with his legs was being able to put himself in a long sit position on his own. Good luck with the Botox!!

ToastieSimons · March 2014

Welcome! both of my sons have a genetic disorder that presents similarly to CP. They have hypertonia that affects their legs much more than their arms. My oldest is much more affected than my youngest.

We have done 4 series of Botox. The first was in DS1's hamstrings. He gained the ability to sit and crawl. The 2nd was in his gastrocs and hamstrings. The 3rd was in his gastrocs and hamstrings, he gained the ability to pull to stand and cruise. The 4th was in his gastrocs and hamstrings. we did this one under mild sedation (versed) and with an EMG machine. He is now starting to walk independently. Before this series of Botox we couldn't get his feet to neutral, his heel cords were so tight. Now we can get him past neutral. He can walk without AFO's or sneakers, although his ankles roll inward. His right side is much tighter than the left and he still has a tendency to be on his toes on that foot. But he can get it flat footed.

Our PT's and original physiatrist were pushing serial casting. However, we lived 45 min from the hospital and DS1 was an awful sleeper on good days, so I was hesitant. We just stuck with the AFO's and eventually it worked. It probably would have worked a lot faster with serial casting.

ToastieSimons · March 2014

MaxandRuby said:

Welcome to the board! @Fredalina, the surgery you are referencing is (acronym) SDR. :-)

DS2, 4.5yr old, has CP. He was diagnosed as spastic quad but personally I think spastic di or triplegia or double sided hemiplegia is a better diagnosis. I consider him to be moderately affected. He was diagnosed at just shy of 10mos old and has had various therapies (speech, feeding, PT, OT, aquatic, hippotherapy) since he was 4mos old. Currently he receives PT, OT, and speech.

DS2 has had botox injections in both legs. I believe it was 3 or 4x total but I did not see a big enough improvement to keep going with it (some people do really well with it while others don't). What I can tell you is be prepared for much screaming and crying. The botox hurts going in. Do you know how many injections she is having (DS2 had 8 total per session). The injections go fast and his crying was done within 5min of the actual injections being done (long enough for me to calm him really). You can try distraction, I would advise to bring something for her to do during it; however, realize that once they start doing the shot the distraction won't work (we bring/brought DS2's Leap Pad). I am not trying to scare you but wanted to give you our experience and a possibility of what to expect. His biggest advancement with his legs was being able to put himself in a long sit position on his own. Good luck with the Botox!!

Ugh, thank you for reminding me!!! Botox is not like a vaccine. That's what I was prepared for. They put the needle into the muscle, then they pull it out of the muscle, without pulling it out of the skin and push it into another part of the muscle. DS1 calmed down quickly when it was finished but it is tough to watch. We just held him down and did it. We didn't bother with distraction.

It was much nicer under a mild sedative, but took a LOT longer.

bumpuser511563 · March 2014

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