Discussions that mention botox

Cerebral Palsy board


would love to chat with you! I have a son aged 3 with cp(spastic diplegia), he also had a pvl and diagnosed epilepsy. He is able to pull to stand using furniture, can use a walker for short distances and has afo's. My son at aged 2 also did not speak, maybe a few words. In the last 6 months his language has exploded and can ask simple questions. It is so great to see.
My son was diagnosed quite late at 18 months, the paeds wanted to make sure it was not just a delay due to prematurity. Lately I have noticed his fine motor skills not progressing as well as hoped, he is booked in for an assessment on the 15th. But otherwise is going as well as hoped. He has been through one treatment of botox and the next i scheduled for end of April. He does well with these.
Anyway, welcome to the message boards and hope to chat again.
Karimsmum
i am happy to talk to someone who is has some of the same stuff as my son, what is this botox i keep hearing about?? what does it do??? i am glad to hear that your son is doing so well it gives me hope!! is this your first board?? this is mine... my mother told me that i need to find people that i could talk to, i was a little deppressed as i am sure you are no stranger to. i cant keep everything inside anymore.. i would love to talk with you too

mama65566
Hi mama 65566,
Yes this my first board too, stumbled on it by chance. I was getting very frustrated within myself as I haven't really had anyone to chat too either.
Botulinum toxin type A, or Botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox is produced from the bacteria that causes food poisoning. In my sons case his lower limbs are affected by cp. The tightness or spastcity of the muscles cause his legs to turn in, his feet to hyperextend and hence the tippee toe effect. The botox treatment involves injecting very small amounts of botox into identified muscles which are tightened by the cp to relax them. This treatment in children is not used primarily just to relax the muscles although that is the effect, but rather to get them to do things thay would not otherwise be able to do. For my son his first goal with treatment one was to learn a better sitting position. ie to get used to legs out front straight rather than the w position. "Legs out front" is a big catch phrase in our house!!
My son is about to get his new walker, the crocodile walker, infinately better than the kaye walker and hopefully he'll take to it. I'm anxious for him to be up and about more on the walker rather than crawling.
Hi becky, would love to know what capability your husband has now. To what degree is his cp?
Take care girls!!
Hi mama,
Yes it can be very frustrating not getting anywhere with the docs. Have you got a cp league or organisation that provides support? If so they may be able to provide you with some names of paediatricians that specialise in special needs children. The same goes for therapists. I found word of mouth worked well. With some medical staff you just have to be very vocal in your needs and they aren't cutting it let them know. My husband found the paed visit a waste of time. He said that the doctor couldn't answer any of his questions, but that's because sometimes they don't know. They have some idea of your childs path but it's not set in stone.
I was lucky, my sons paed has been with us since his birth. He consults in the special care nursery at the public hospital my son was at. And once my son was diagnosed I started seeing him privately.
It will be a very long road though. I for a long time saw no improvement but other people have.
How often does your son have PT? With my sons physiotherapist, we see him once a month and he gives us ideas on excercises to try and practise at home. With botox he'll go once a week.
Can I ask what grade was your sons pvl? My sons was grade 1 pvl on the left ventricle.
cheers!!
i have a 4 year-old son that was diagnosed with cp at birth, low tone, speech delayed (can not speek yet), and does not walk yet, and is prone to to seizure activity. Actually he just had one yesterday and i was shaking so much i couldn't give him the emergency diastat and had to call the ambulance. I too am looking for someone to talk with about things, it is great to find another person with the same issues. How is it with your little on walking? Fun? My son is due to get botox injections in his right leg and arm, we hope that he will walk soon. Good luck with everything.
hi abbeys mom,
I did actually read about this somewhere, not sure if he would be a good candidate or not. His afo's seem to be able to keep his feet in place and his botox specialist told me these are going to be long term aides for him. How is your girl now? Can she walk?
Hi jesse4, that must be a harrowing experience for you. I have a friend who has a son with cp and has seizures almost every week, which more often than not involves a trip to the hospital. I am very lucky with my sons seizures, we have them under control and if they stay like that until next year then we can think about reducing the meds. Good luck for the botox treatment, it can work wonders. My sons walking is very trying at the moment, his abductors (?) are very tight and his scissoring legs make it very difficult. He is getting injections in the hamstrings, calves and abductors this time.
Hi, I have a 4 1/2 yr old son who has spastic diplegia & we are in the process of learning about botox treatments & the best way to start them. I have read some on the sdr, but am not sure if he would qualify. We live in South Carolina. Could you let me know where & who did your daughters surgery? My son stands on his tipee toes without his braces on. We did suit therapy & HBOT the summer before last and while I didn't get the results we had hoped for he was able to sit up better. Thanks for any info you can send me. Tina