United Brachial Plexus Network, Inc.

We saw Dr. Hentz yesterday for our 4 year old daughter. He noted that she has lost some range since last seen about a year ago. He wants to go ahead and botox and cast her affected arm for around 3-4 weeks and then immediately start constraint therapy. He is suggesting that she may be a candidate for surgery if this procedure doesnt help her gain mobility.

I have two questions. The first is whether anyone can give me information on this procedure and how it worked for your child.

The second is a timing question. We have A LOT going on right now. We are moving in 2 weeks, I am due to deliver by c-section in 10 weeks. Also, and maybe less important to me but more important to her, is swimming. She is loving it and this is the first physical thing she has felt so succesful at. I hate to put her in this cast and expect her to sit out the rest of the summer. I'm just not sure when the best timing would be for any of this and whether its going to be critical to go ahead and do it now or if we can wait a bit to get things started. I do have family,etc. who can help us out with whatever we need. I just dont know whether this is so tough on them emotionally that it wouldnt be a good idea to do all this on top of the big family changes we have going on.

Thanks for your suggestions.

many questions: what muscles does he want to botox (ie will it affect her swimming)? Could they do a removable cast (so she can swim)?

Every doctor we saw was very adament about Joshua learning to swim. It is THE number one way to maintain range over a lifetime and very good exercise, besides. If it were me, unless what Dr. Hentz is talking about could be made to fit in with her swimming... I would think twice about doing it before the summer swim season is over. I really think that swimming is so important in the long run!

Kate

I am not a big supporter of constraint therapy but I am OBPI and have many sensory issues.

Swimming is such a great way to work our arms.
We had a pool for many years and my range increased while we lived there.
I noticed after we moved and I no longer swam for 4 months out of the year I lost range of motion.

Considering all your family is going through, ask the doctor if it's possible to put this off a bit until your moved in and settled.
It would be a shame to take away the swim season...
Ops perhaps you live in a warm climate and it's not seasonal.

Kath robpi/adult

I can't imagine that another month or so is going to make or break the ability of botox+casting.

Plus, ALL docs recommend swimming as the number one physical activity for our kids. Dr. Gilbert mentioned it numerous times during his talks in Cinci.

Swim, swim, swim...tell Hentz that you are happy to do this in September.

And what surgery is he thinking of? We did biceps lengthening and would NOT recommend it.

good luck,
claudia

We didnt spend too much time talking about surgery but I expect he is still referring to a tendon transfer which is what we had discussed a while back.

I'll be so honest, I'm a bit out of the loop. We had been operating under the assumption that all was fine with her and then we go to the appt. and find she's losing range of motion. I feel like I dont really know what the current trends are, etc. or what people are saying is working or not working. I'm just discouraged that she has lost range and there seems to be more concern now about her joints.

I am not familiar with Botox and casting so I can't comment on that at all but I am familiar with constraint therapy.

We did it with my son. He was about 2 when we started. We did it about 3 time maybe 4 over two years. He had a cast placed on his UNaffected arm. It was from his top of his arm all the way down and even covered the tips of his fingers. His arm was placed in a slightly bent position for the cast. For him it was a good experience. And we did see results. He has the ability to use that arm but typically doesn't... it is almost as if it is a habit to not use it. So this was great for that. I really want to add that the more therapy that he had while casted the better the result was. Just wearing the cast was not enough. We had to up his appointments to about 3-4 time a week plus do more formal therapy at home with him. It was a lot of work. He didn't keep all that he had orginially gained but he had more than he did prior. Plus he just used the arm more. That didn't stick forever either but I would have kept casting him regarless because I felt even for a small time frame it was a good thing.

We stopped doing the constraint therapy when he was 4. At that time he had become very sensitive to the casting material and it caused a really yucky rash to his hand. Also he became more dependent on me to help him with everything. When we were casting him when he was yonuger I had to help him with everything regardless so it wasn't an issue. But at 4 he could do a lot more for himself and I'll admit it was frustrating for me to have to help him with tasks he used to be able to do alone. And I had a newborn so I wasn't up to the task in the same way.

I wouldn't cast in the summer because of the swmimming factor. In fact we don't do formal therapy in the summer because of all the extra life therapy we can fit in!

Please feel free to e-mail me if you want to talk more about constraint therapy.

Moving is a huge stress and adding a sibling - another huge stress... can you hold out on the casting for a while? I know that I can only handle so much stress...how much can your little one handle? And how much can you handle if she gets freaked out at how many changes are coming her way. These are huge life changes we're talking about.

Good luck with your move and birth!
-francine


Message was edited by: F-Litz

I too saw Dr. Hentz and am considering botox. He said that it was okay to wait until the fall - I did not want to miss swim season either. So it is worth inquiring. Also I am interested in finding out how much success anyone has had with this. Thanks!

My daughter Cassidy had the botox and casting treatment done and I think it was so worth it! It did wonders for her range and also for the position of her arm,it now hangs in a natural way. Her botox treatment was over 8 months ago now and she still has all the benefits from it.I hope that helps you out a little

Dawn
mommy to Cassidy 15 months
ROBPI