May 12, 2009,
K.C. asks from Roanoke, VA on January 04, 2009
Botox Injections to Relax Muscle Tone
My 2 1/2 year old recently had botox injections in her right arm (5 places) to relax muscle tone and help her to use that arm more. I was wondering if any other parents have experienced this treatment with their children. The doctor will see her again in 3 months and the botox should work for 3 to 9 months before we have to do it again. I'm excited because we already have seen her using the hand more on her own and it does seem to be more relaxed therefore easier for her to do more motions. (carrying a tray or big ball). I've heard of this botox being used in MS patients, too.
I'll add that she is currently in Early Intervention, doing PT, OT, and speech. She turns 3 in April and we are looking into what our local city school program can offer her, if anything with therapies at that point. OT 1/wk, PT 1/mo. and ST 2/mo. We've tried constraint therapy before but she fought us and her OT a lot, so we have postponed trying that until she's a little older.
B.W. answers from Washington DC on January 05, 2009
I agree completely with Kristen. I am also a pediatric Occupational Therapist and mother of two. As a therapist I have seen some very nice improvements after botox! But best achievements are when combined with therapy. There are other less known/accepted therapies for addressing this topic. One that I have done and seen GREAT results with is called CIMT (Constraint Induced Movement Therapy). Check out this website if you are interested in more information. They have now given it a new name, but this is the group that founded the procedure and there are many variations of this... http://circ-uab.infomedia.com/content.asp?id=98819 Let me know if you have further questions. Glad to hear botox is working well.
1 mom found this helpful
K.M. answers from Washington DC on January 05, 2009
I am a pediatric physical therapist and a I too had a little girl with an AVM a year and a half ago. She did not make it after her embolization but I am so glad to hear about children who do. Thanks for sharing your story. On my professional side I have seen a lot of children benefit from botox injections. Although I am not a mom of a child who needed it I have seen great benefits. You didn't mention whether she was in OT or PT but if she is not I would highly recommend that she be. Some doctors will do the shots without therapy but the best benefits always come with concurrent stretching, strengthening and functional training - as you probably know. Trying to really have her do as much as she can at home with reaching and dressing and fine motor will also help prolong the benefits and may cause enough muscle lengthening that she will not need injections as frequently since you are just trying to keep the muscle length (growth) up with bone growth. Home stretching will also benefit her so try to do it daily. Hope that helps.
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J.V. answers from Norfolk on January 05, 2009
Seems like you've received excellent response from "experts". I opted not to go the botox route (at least not yet) with my 4.5yo daughter. Her situation is a bit different than your daughters. She was a preemie weighing in at 3 lbs. I adopted her when she was 9mos old, weighing 12.5 lbs. She has been developmentally delayed, but intellectually at or above age level. She's received physical therapy since her first birthday + has been a toe-walker since the beginning.
She had extremely low muscle tone + the toe walking (one, among many of her sensory issues) resulted in tighted heel cords. Her regular physical therapist recommended botox, but her regular pediatric neurologist disagreed and sent us to a pediatric physiatrist for a second opinion.
Ped neurologist said he'd have to give her a sedative in order to give her 4 injections and believed the botox would be good for 3-6 months. So, I opted to try yet another type of leg brace (her 3rd in 2 years) in an attempt to stretch the heel cords. There were a few days with tears early on as I adjusted how long she'd wear them. She now wears them about 5 hours a day + hardly ever toe walks.
A.H. answers from Charlottesville on May 12, 2009
We've done 3 rounds of botox for my girl. Her story is here:
We loved the botox results...but spasticity does return, and Botox eventually stops working. We were lucky...in E's case, her legs were much less tight for about 5 months at a time.