Cerebral Palsy
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Botox Injections

joannehannam86joannehannam86 Member Posts: 5
edited May 2014 in Cerebral Palsy
My son Jack is due to have his first lot of botox in his feet early next year, our consultant didn't give us much information about the treatment, as far as we understood he wanted to see us at Alder Hey children's hospital before the operation was arranged so he could get to know Jack and Jack could get to know the hospital. Jack usually receives his care at another hospital. I have received a letter with the botox appointment and I'm quite concerned about what to expect. I know jack with be receiving anaesetic and that he will only be in hospital for one day, i have no idea about whether he will be in pain afterwards, how long the recovery is, will he be ok to go to school or will he need time off etc,

Does anyone have any info on this treatment???

Jo xxx

Replies

  • joannehannam86joannehannam86 Member Posts: 5
    Thanks so much for your time in explaining this procedure to me in a clearer and more informative way than our consultant.

    I feel much better knowing that my son should not be in much (if any) pain after his injections.

    I'll definately be making some enquiries into how experienced our consultant is at this procedure. We have had the same consultant for some time now and Jack is beginning to build a relationship with him finally, he seems pretty confident but did mention that the botox will probably only be given over the next 18 months and then he would look at a tendon transfer then as the botox may not be as effective then as it should be to start with.

    x
  • TPTP Member Posts: 8
    We used botox for our son on five occasions. In our case there was a small amount of pain during the injection but no more than one might expect from a vaccination. The efficacy of botox depends on a number of factors. Two of those factors are the amount injected and the precision of the injection. We used general anaesthesia during the procedure in varying quantities - (the first four times my son remained conscious and the last he was asleep) the reason for the anaesthesia is to facilitate the doctor's exact placement of the needle in order to achieve the most beneficial effect. They don't want the patient flinching from the insertion of the needle and running the risk that they will miss the target. There was no pain after (other than the miserable feeling from the anaesthetic). The botox acts to weaken the overworking muscle. It's efficacy is on a bell curve - so that it takes some time to reach its peak efficacy an then tapers off. My son had to adjust to the overactive muscles weakening and it forced him to use the weaker muscles in his legs. The first use of the botox resulted in a massive leap forward in terms of my son's mobility. He was able to move from a K-walker to sticks. The second was not effective at all - which, along with the doctor, we put down to a failure to inject the toxin in an advantageous place. The third and fourth were very effective.The fifth was performed by a different doctor in an operating theatre under a full general. It was only mildly effective. There were some theories about the lack of total success on this fifth occasion. We were among the first wave of people to use botox for Cerebral Palsy - it was not completely understood if the effects would diminish the more ofter it was used. This is something you should ask about. My son was growing and there was some concern that we had achieved as much as we could with botox intervention and we should begin to look to surgery. For us, the recovery time was very quick - the time it takes to recover from anaesthesia. He went back to school normally but we were careful to monitor his tiredness as new muscles were called into action as the overactive muscles weakened. Our experience suggests that the critical components in the use of botox is the amount injected and the skill of the person injecting it. It would be worth checking how often your doctor has used botox and perhaps ask to speak to the parents of other children on whom he has used botox. Crucial tip: if the first experience with botox is kept relaxed and pain free, any subsequent attempts will be a great deal easier!
  • JDWilsonJDWilson Member Posts: 90
    My daughter has SD CP and has had botox several times too As TP said it Pretty straight forward and results can vary each time. My daughter was sidated to calm her as she was upset before procedure It depends on the hospital and child for medication given One time she was Asleep throughout so they could get more prescission.She was always Fine after just a bit worried before. they do a good job reasuring them though if not putting them to sleep which means you out quicker. Samantha went back to school normally and we didn't notice Big changes except once when they did her calf muscles then put casts on for two weeks to give a better stretch AMAZING from toe walking to heel on ground for first time WOW. They will proberbly put ansthetic cream on injection sites it doesn't take long and nothing lost if no effects It works short term and buys time before more permanent procedures or ops. Good Luck.
  • curliesue2curliesue2 Member Posts: 6
    Thankyou for the information on botox. My daughter who is two and half and has sd cerebral palsy, cannot stand or walk and mildly affected left arm. Shes just been put on the waiting list for botox aound 3 - 4 months time they are saying. Shes got to be sedated as she gets that worked up when she goes into hospital and gets even more tense that what she actually is. Am interested on everyones progress and experiences in the future. Good look to all xx
  • katmileskatmiles Member Posts: 1
    hi,

    im 26 yrs old and have been having botox injections since i was 15 in my leg and arm. they give me such a better quality of life when they are working and i cant wait each time to have them again. i normally go in once a year for a day op and it is harmless. the recovery is very quick and it takes roughly 4 weeks for the injections to start working, when they do kick in jack may lose the use of the limb that has been injected temporarily as it's used to being moved by other muscles so its a case of training your other muscles to work, i normally take 2 days off work, one for the op and the second to let the effects of the anaesetic wear off.

    i hope this helps.
  • popeye67popeye67 Member Posts: 7
    My daughter recently had botox injections, i wasn't with her at the time as i am seeking custody, she is currently in foster care so i can only go by what the carers told me, i believe the procedure was carried out at Fairfield Hospital in Bury, she received no anesthetic and was in a great deal of pain, she was given rohypnol so she wouldn't remember how painful it was.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    Hi, I have tetraparesis cerebral palsy, hydrocephalus with a VP shunt and am partially sighted . I use a power chair to get around both in and outside the house. I have just recently heard about Botox and read the Factsheet that Scope has on their website which is informative
    however, I have some reservations about it because of my shunt as I am not able to have all types of injections for example as a baby I was unable to have the whooping cough vaccination. I am also not sure because of side-effects and recovery. I often tend to suffer with side-effects from medication and also get very anxious about tests. I need general anaesthetic for MRIs and have a hard time when I go for a blood test due to the fact that my veins are not easy to take blood from and it often takes the attempts of two or three nurses one after the other. I also bruise really easily even form injections.
    I read that Botox is not suitable for everybody but upon reading some of the things it helps I realise that if I do get the okay from doctors I may try it, as it reduces spasticity and is helpful in urine incontinence which in my case is severe. I am 29 years old and have never tried Botox before. The recovery period also concerns me because I need help in daily tasks.
    Anyone have a similar situation?
    Katherine
  • CraigCraig Member Posts: 1
    HI i have CP which mainly affects my right side my right leg mainly. It gives my poor balance and i am unable to place my right heel flat on the floor. I have been looking into botox injections myself. I have not had any surgery for many years and dont know where to begin. Would going to my GP be the best starting point?
    Thanks
  • popeye67popeye67 Member Posts: 7
    even though im not happy with the way they are administered botox injections do make a noticeable difference with my daughter, from what i gather they are more effective the younger you are but it changes from person to person, only way to find out if it would work for you is trying it
  • curliesue2curliesue2 Member Posts: 6
    My daughter has finally got her app come through for her botox injections. She goes in on the 17th August. Not been thinking bout it too much but had her pre op app a couple of days ago and now its sunk in that "this is it". Bit anxious about how it will affect her once its started working on her (have been told this is around the 7 - 10 day mark), and very eager to hopefully see some sort of improvement in her legs. Have also got a fantastic physio for my daughter who is extremeley helpful and supportive.
    Hope it makes a difference fingers crossed :):):):)
  • JDWilsonJDWilson Member Posts: 90
    curliesue2 how did your daughter get on with her botox injections? Hope everything went ok and you saw some improvement.
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