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Thread: What to do? Botox?

  1. #1

    What to do? Botox?

    My daughter is a T12, with return in her left to her knee and some return in her right. We have been fighting hip tightness for some time. Her therapist thinks she could use arm crutches if we could get her straight.

    We have her on Baclofen and stretch her two to three times daily. He thinks an injection of botox in her hip flexors would be a good idea and keeps pushing the idea. I hate the idea of using botox, concerned about her losing return and hate to inject her with poison.

    I want her to be able to use arm crutches, but don't know what to do.

    I would like all your opinions.

  2. #2
    i'm T11-T12 & my hips can really get tight to the point of agony. one stretch that helps tons is to lay on my stomach & push up onto my elbows for 10min. do you have her in a standing frame? Garro.

  3. #3
    gcbl - I don't know if this is reassuring but the botox is not permanent and will wear off in 3 months. At least that is what I know about its use in facial cosmetic treatment.

    So stretching isn't helping? I would figure that would be the way to go. Hip tightness is so common in people in chairs and with unopposed muscle groups. What about sleeping on her stomach (prone).

  4. #4
    Thanks!

    I can't get her to sleep on her stomach. We've talked about strapping her down, but decided that would be cruel.

    Stretching does help, but not enough to get her straight enough to be able to stand straight in her leg braces with arm crutches or walker.

    She does have a stander and she uses it about 3 times a week for about 1/2 hr at a time, but it is a little large for her and doesn't get her completely straight. When she is really tight she can't tolerant the stander.

    I think the baclofen has helped recently, but the therapist didn't think very much.

    I'm concerned that the botox will take us backward with the return she has received and maybe atrophy her muscles more.

    We do have a SWASH on order that they use for kids that support hips. She might be able to use the SWASH with the arm crutches. Not sure. Not sure when it will come in as we have already been waiting awhile now. I'm thinking I'll probably wait to see how the SWASH works before doing botox if at all.

    Anyone get botox for tight hips? If so would you recommend it?

    Are tight hips more typical of a lower level injury when you have some return?

  5. #5
    Junior Member
    Join Date
    Aug 2005
    Location
    New Hampshire
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    24
    Hi,

    Don't want to scare you but I am a c6 quad and had botox in my calfs about 4 years ago to try and reduce ankle tone. I'm sure I was a rare case but I had a very bad reaction to the botox. All the muscles below my injury (many of which worked and helped in my daily life) stopped working. I went from being able to walk a little and stand to needing help in the bathroom and even same level transfers. I had lost everything i had worked so hard for and took about a year to get back to where i was before botox injections.

    jen

  6. #6
    wouldnt do the botox. I had botox injections (4x) in my left calf in an attempt to loosen the tight ankles I still deal with. It did little, and felt the insurance co. had wasted a ton of dough doing this. I agree with the stomach stretch. perhaps you could lay her slowly over a bed crossways so her legs hang over the edge, and stretch the hip flexors that way? I sometimes do this, but its tricky for me (large butt)....gravity can get ya real quick if ya aint paying attention.

  7. #7
    locomotor training has done a great job of reducing my sons tone.

  8. #8
    Senior Member
    Join Date
    Jan 2009
    Location
    california
    Posts
    186
    I currently get botox injections in my quads every 3 months with phenol added at 6 months. My spasms toss me outta my chair ALL the time. I can even 'walk' on them w/ long leg braces and a walker. The botox takes a week to work after the injectons and usually lasts for me up to 10 weeks and Medicare only covers injections every 13 weeks so that's what I do. It is NOT permanant and I was on 120mg of baclofen/day before I swapped out for zanaflex 36mg/day and botox. Neither have ANY side effects on me. I'm a c7-t1 super incomplete as most label me a para since i'm super buff n stuff. I've had the botox injections since 2006 so feel free to PM me if you want more info
    good luck,
    k

  9. #9
    I want her to be able to use arm crutches, but don't know what to do.
    What does your daughter want to do? She is getting to the age where she has a definite opinion and good luck making her do what she doesn't want to do.

    The simplist, least expensive, way is to hang your feet over the edge of the bed while watching tv, a movie, etc. I use 2 lbs weights on each ankle but built up to that slowly. Botox used too often can break down muscle. Done by the right doctor, it works well and has been used for at least 25+ years on kids with CP who have no other option.

    If your daughter has the same goal as you, get her to stretch. If she doesn't care, good luck getting cooperation.

    FWIW, my son (same age as your daughter) had significant knee contractures after a prolonged illness this past year. We stretched him with his feet hanging as well as had him sleep in full leg braces every other night. I figured he would NEVER cooperate but he did because he wanted the contractures fixed and to walk tall. He wore the leg splints loyally during the summer heat, stretched and did his exercises. Today there is very little of the contracture left and we do different exercises to get the last bit.
    Every day I wake up is a good one

  10. #10
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
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    8,272
    The botox would concern me in a child. I would hold off. Good point Cheesecake made as to what SHE wants ..... thinking lying prone and more time standing would be keys here, which you are finding are not feasible.

    Can you come up w/ activities she likes for those positions? A board game on the floor while she is prone? Laptop on the stander?
    T7-8 since Feb 2005

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