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Botox injections and cerebral palsy
It's been recommended that DD receive botox injections to loosen up the muscles in her legs. She has a mild case of cerebral palsy, affecting her legs and right hand. She's approaching 3 years old and her PT, OT, nerologist, and physiatrist have all recommended it based on her condition and that she is approaching a great period of growth.
I'm actually fine with the botox, but am nervous about the anesthesia. Does anyone know anything about this whole process? Any information that you can share would be helpful. Thanks
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Re: Botox injections and cerebral palsy
DS2 just turned 3 and has CP. He received his first botox injection this past June in the calves only. Personally I, nor his DCP, saw much difference plus the effects seemed to have wore off quickly. We are kind of thinking part of the problem may have been that his tight hamstrings started fighting with the looser calve muscles. I am waiting for the 2nd round of Botox, but my insurance company decided not to pay the neuro for the actual Botox (paid for the visit though) so I'm having to wait for the insurance to get figured out before the neuro will do round 2 (don't blame him).
I can tell you that my son did not have to have anesthesia for it and it is a relatively quick procedure although it will depend on how many shots he gets (DS2 had 4 in each leg). I was not in the room when it was done (DH was) so I do not know if there was a numbing spray or cream applied or not. The appointment seriously took maybe 5 min though and DS2 was completely fine by the time he got back to the waiting room. The injection of the shot was painful though and he cried a lot only at that point (I could hear him in the waiting room).
Also, be aware that Botox does not work for everyone. Some people are more sensitive to it and see more results while others see little to no results. For me, if I don't see better results with Round 2, which will be calves and hamstrings, then I won't be doing it again.
I have read that they like to start off with low doses of Botox so kids don't end up with too much spaghetti, limp limbs, and I was told that she would definitely require multiple sessions. But, supposedly the loosened muscles and a quality pt program is supposed to help her. If I didn't see results though, I'd probably be skeptical too.
There seems to be a lot if resources out there that discuss the use of Botox in children with CP, but I feel like the personal stories...hit home more? Thanks for sharing.
I didn't have time to write out our experience with Botox when I posted but I'll elaborate more now.
DS1 started his first series at 17.5 months. He has severe hypertonia and he's had PT since 3 days old. He could not long sit on the floor. I noticed that he was sitting perfectly fine in our laps or on a bench (with knees bent) and as soon as his legs were pulled straight he threw himself backwards. I asked the PT about it and whether we could use Botox to loosen his hamstrings. Her and the physiatrist both felt he threw himself backwards because of his high extensor tone. However, she said to discuss it with the dr and I did. He had 150 units injected into his hamstrings. One needle in each leg (it was 60% in the right and 40% in the left to compensate for his higher right side tone). He was not sedated. They sprayed his leg with the numbing spray and injected. A nurse helped hold him down. He screamed bloody murder but within about 5-10 minutes was calmed down and back to himself. Within 2 days we started seeing his muscles loosen. Within 3 weeks he learned to sit up completely unassisted and within about 6-8 weeks he learned to crawl.
He had a second series at 21 months. He had 200 units in his hamstrings and gastrocs (calves). He has extremely tight heel cords and even with wearing AFO's he still couldn't stand flat footed. I didn't notice a huge improvement with this set. It really did help his heel cords lengthen some, but he was just starting to pull to a stand and wasn't very good at it. It did work but not as drastically as the first series.
He had his third series at 27 months old. Again 200 units in his hamstrings and gastrocs. He has gone from barely pulling to stand with his legs together to getting up from a half kneel and cruising furniture. This one was as drastic as the first series.
For us botox has been a godsend. It changed our lives immensely and I don't think DS wouldn't be anywhere close to where he is without it.
We just finished up our 3rd round of injections this past week, DD started when she was 1.5yrs old and gets a ton in both her left arm and leg so we knock her out. It's pretty fast and my girl does fairly well with the anesthesia (of course every kid is different) and starts pounding her juice right away so we get out of there quick. I personally prefer to hold her while they are putting her out, she's not a fan of the gas mask but does better and wakes up happier when she falls asleep with me. Some docs are not comfortable with this but if you're at a children's hospital and you are comfortable with it they are usually ok.
I also got my hands on a face mask for DD and her baby to play with before we went into the actual procedure room (ask about child life or whatever your hospital's program name is). She liked playing with the mask and even though she still is not thrilled when someone else is holding it in her face I think it's helpful and decreases anxiety.
I have a love-hate relationship with the shots themselves, I absolutely see a benefit for her, particularly when we do her stretches but it wears off pretty quick (again every kid is different). She tends to tighten up pretty quickly right at the 3mos mark. I also hate that she goes under anesthesia so often but she gets so many injections that I really would not have it any other way.
Good luck and feel free to ask any other questions about it, it's a big step :-)