Hi all.  I hope everyone is doing well.

I just wanted to get everyones input about Botox therapy in relations to PT/OT.  Trey is doing well.  He has been walking for a while minus a few weeks ago when he hurt his left leg (MM affected side) and didn't walk for over a week.  He is still limping and falling down some, but time hopefully will make that better.  I got off track, sorry about that.  One of his sets of therapist want him to receive Botox therapy in his hamstring and heel cord, especially for and during growth spurts.  I want anything that is going to help him and so does my husband but he has a problem with the thought of Botox.  I am not informed enough to voice my opinion other than I have seen on this board that many kids get it and it is supposed to help.

So what are your thoughts about Botox?

Thanks,

Michell

Hi Michell,
There has been a recent report on Australian tv about kids with cerebral palsy taking Botox every 6 months.
Well my opinion is if it helps the situation with your son, use it,  as it will possibly benefit him, although I must say I would never personally use Botox to get rid of wrinkles. I suppose the difference is that one is a want and the other is a need.
Just my opinion
]Moira

Coincidental that you brought up botox.  I am not that familiar with it, except when I hear movie/tv stars having botox injections to create a fuller lip, etc.  However, I recently met a wonderful young woman who thinks she may have MM because her symptoms closely relate to those many of us have experienced. (She is currently having her films sent to Dr. Takanori Fukushima for his review/opinion).  Anyway, due to her very painful migraines, her local neurologist has suggested about 26 botox shots.  20 will be in her head and 6 in her neck/shoulder area.  She told me that they told her it would "numb" the area and reduce the pain from her migraine headaches.  I had suggested she hold off until she hears back from a MM specialist because the thought of numbing or even killing nerves scared the heck out of me  :o especially if it wasn't necessary.  Anyway, she went ahead and did it on Oct 3rd, and I haven't heard back from her.  I'll check on her and let you know how/if her botox shots helped her.

I know this doesn't relate to PT/OT, but I found it interesting that botox was being used in other things than plastic/cosmetic situations. What did Trey's doctor say the botox would do to help him?  Does it relieve pain?

Take care,
Shan

Trey's therapist just thinks that the shots will help with growth spurts, I believe to "loosen" up the hamstring and heel cord.  Since he is 2 he still has alot of growth spurts to go.  He is hemaplegic (not sure of the spelling) on the left side, doesn't use the left side like he does the right side due to the second stroke.  He isn't tight in the hand area, just the leg area, but I don't believe he is extremely tight except for the hamstring and maybe heel cord.

Thanks, I look forward to future reading.

wrote on Oct 6^th, 2005 at 12:52pm:

Trey's therapist just thinks that the shots will help with growth spurts, I believe to "loosen" up the hamstring and heel cord.

Michell -

I've heard of this before.  And, actually, I inquired about it because my younger brother has a disability that, in effect, tightens his muscles.  Well, it wouldn't help him, but, none-the-less, it's not unheard of.  In fact, I saw a story on TV, about the  McCaughey Septuplets.  I believe two of their children received botox injections. (http://mccaugheyseptuplets.com/stories/lexibotox.htm and http://mccaugheyseptuplets.com/stories/nathanbotox.htm) if you want to read more about the McCaugheys.

-Shari

Michell,
              Mandy has been getting Botox in her unusable left arm, hand and shoulder for 2 years since she had her strokes. What it does is kinda the oposite of what it does for the womens faces, it actually numbs the spasticity so the spastic muscles can let the area loosen. In faces it freezes the muscle so it does'nt droop or whatever in spastisity it freezes that so it kinda doesn't work anymore so the spastisity is reversed. I hope that makes sense to you, anyway it has helped Mandy TREMENDOUSLY. Mandy's hand was totally curled and could not be opened by anyone anyway they tried, her arm was hooked up under her boob twords her jaw, she can now straighten her arm almost completely and lift her elbow from her side as high almost as her shoulder, and her hand is like a loose letter c shape. When she is tired or really relaxed watching t.v. or something they are almost straight. Botox works best in conjunction with therapy, the therapy is easier and helps the botox along. Mandy gets it every 3 months and ins. pays for it unlike the facial botox, because it is necessary which your Dr. I'm sure will tell them. It is very expensive 500.00 a bottle and Mandy gets 5 each time to cover such a large area. I do suggest some type of pain med. before getting it as it is several needles, if it's only his heel cord and back of the leg it may only need 2 needles. Please don't let the fact that it is needles or that he may need pain med., if need be, defer you it has worked wonderfully for Mandy and just makes her apperence when you see her a little bit more "normal" in her arm and hand for lack of a better word. It makes her feel better. She can slightly and I mean slightly move her wrist up and down, I don't think she will ever use her hand again but it makes her more comfortable. I hope this helps any more questions please ask.
                           Nancy :)

Nancy and Michell,
This is fascinating.  I had no idea that Botox could be used for this purpose.  
Good luck with the prospect, Michell.  I hope you have as much success with it as Nancy's daughter seems to be having.

Shan,
A pain doc. I went to for a short time suggested that I have botox injections.  I am glad I decided against it b/c another doctor said that it could be dangerous for a MM patient.  Reading this CNN article makes me agree:
"It is not really clear how Botox curbs headache pain and stiffness. Researchers think Botox blocks sensory nerves that relay pain messages to the brain and relaxes muscles, making them less sensitive to pain."

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Hope you find this helpful for your friend. Take care,
Stephanie

Nancy,
Thanks for your post. I was starting to wonder why I had never heard of this, since Tyler has Cerebal Palsy and now the effect of his stroke, but your post explained a lot. Tyler's muscles are very relaxed, low muscle tone, and his stroke even relaxed his muscles even more. He definately doesn't need the Botox treatments.

Heck the one thing that helps him get accepted more in Jr. High is the fact that he can bend his fingers backwards just by straightening his hands. "Party Tricks" as we call it, are very cool to that age group.

No problem Rena and I'm so glad Tyler is having an even easier go of it..... God knows kids can be cruel.
                        Nancy

 I belong to an e-mail group for parents of children with hemipalegia.Many of the chidren have had botox.Kathleen hasn't eneded this because she's actually moer like Tylor, very loose.Every joint in her body can bend like you wouldn't believe.You should see the way she sleeps,her legs crossed underneath her with her feet by her ears.I ahve to unfold her ever chance I get becuase this is terrible for her joints.Her left knee can bend backwards and this is part of what her AFO helps with.I don't think I've seen anything negative about the botox except may if the insurance won't pay.
Mary Grace