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Botox

LizDLizD Posts: 6Member
edited May 2015 in Parents and carers
My 7 yr old son had botox about 5 weeks ago, but we haven't seen great results? He has mild spastic diplegia, and had the injections in his left ankle. He walks independently, but is up on his toes on the left, right side not so much. Both feet turn in, left leg significantly so. He had a plaster cast on for the first 2 weeks, which put his foot in a perfect right angle, but even with that he was up on his toes. His ankle can flex to a greater degree than pre botox, but it hasn't made a difference to his day to day walking. It is almost like he has a habit of walking a certain way? He can get his foot flat on the floor, but it takes lots of effort for him, and obviously being 7 he wants to be off with his friends as he is much faster when on his toes.
Does anyone have similar experiences?
Thankyou!

Replies

  • RockyRocky Posts: 76Member Listener
    Hi Liz, For children with spastic diplegia (meaning the muscles in his legs are tight), Botox is often recommended as it can be more effective than surgery or splints in relaxing the tendons and muscles and enabling children to get their feet flat on the floor.
    Is your son also having physiotherapy? This is essential to Botox treatment. It sounds as if he has recently started Botox so I would suggest that it may take several treatments before you see the full effects and it is important to do the physio at home as well.

    I totally understand that he wants to be off running and playing with his friends and, of course, at 7 he has developed his own way of walking but I would urge you to persevere and try to get him to walk with his feet flat as much as possible. It will be slow to begin with but will be much better for him in the long run.
  • MSPMSP Posts: 3Member
    Are Botox treatment side effects as bad as they sound when you look on websites about it? I am really not sure about my daughter who is 5 in November having it done. We are waiting to see a consultant to find out more, but as I said to my husband if I had wrinkles and he told me to go and have Botox like all the celeb's I wouldn't. So if I wouldn't have it done is it therefore not fair to put her through it? Also she is about to start in reception after being at pre-school for the last 2 years. The other thing about the side effects I read was something about them lasting 2 weeks so does that mean she either can't go to school because they won't take responsibility for what happens during the after treatment process or she won't be well enough therefore she will miss loads of school??
  • Jean_OTJean_OT Posts: 532Member Pioneering
    Hi MSP
    There is a lot of information and mis-information about Botox available on the internet. I would suggest that you take a look at: http://www.scope.org.uk/support/families/therapies/botox
    if you what to read something that is both current and balanced. In the UK children who receive botox from the NHS will have been screened to ensure that they are a suitable candidate and the treatment will be administered and supervised by qualified and experienced medical professionals, see NICE guidance: http://pathways.nice.org.uk/pathways/spasticity-in-children-and-young-people/botulinum-toxin-type-a-for-treating-children-and-young-people-with-spasticity
    This greatly increases the chance of the treatment being beneficial and reduces the risk of something going wrong. Most children who receive botox in the UK will experience some benefit from it and very few will experience any serious or long term negative consequences. I think when people talk about mild side effects maybe lasting up to a couple of weeks they are probably talking about a mild case of the 'snuffles', and I would hope that a school could cope with that. As you are waiting to see the consultant it might be best to talk over the potential benefits and risks with him or her and then if you decide to go ahead prime the school about what (if anything) you need from them in the period immediately after the treatment.

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • LizDLizD Posts: 6Member
    Hi MSP,
    My son had botox to improve flexibility in his ankles. Although it didn't help his gait, it made his ankle much more flexible, has made riding his bike easier etc. He had the botox and a plaster cast on under a mild general anaesthetic. He was a little bit nauseous post op, but that was it. He was at school the next day, desperate to show off his cast. He had no side effects, didn't feel unwell or drowsy, he was completely back to normal within 24 hours.
    The botox in my son is going to be repeated in six months, as maintaining the flexibility in his leg is beneficial in the long run.
    I hope this helps
    Liz
  • MSPMSP Posts: 3Member
    Hi Thanks for all the info it's much appreciated. I have spoken to the hospital today and we will have an appt in next 2 months. They will decide then if they feel it will help. Although she hasn't started at the school yet I explained as much as I knew before the school broke up but obviously the diagnosis was only confirmed 2 weeks ago. She has now got shoes from an orthotist and she seems to like them although there are days when she says they are uncomfortable, so we are trying 3 hours a day at the moment with the hope of getting it up to a normal school day before she starts. So when she starts school she is wearing the orthotic shoes not changing from "normal" shoes to clumpy ones from the orthotist a few weeks after starting school. (things are going to be hard enough at school without altering shoe types and making her stand out even more if you know what I mean) I maybe worrying about nothing but sometimes children can be quite nasty. Although her CP is somewhere between a 2 and a 3 and 10 is the worst you still get the stares and the looks of sympathy which only adds to the frustration of how some
    people can be so ignorant! Thanks again for all your help.
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