United Brachial Plexus Network, Inc.

Brenda after the seril casting last summer did Michaela wear a splint at night to maintain the elbow extension? This is going to be a lifetime thing if we want our arms to be straight. Like I mentioned I still wear a splint at night three years later. The only times that I have missed were for two surgeries that I had, one in my hand and the cast came up just high enough I couldnt waer my splint and one in my shoulder this summer wear they needed to keep my hand against my stomach. Both surgeries set me back quite a bit but with splinting I am back to about 5 degrees passively, its a little worse actively.

Maybe this is something Michaeal needs to deal with when she is older? Unless it is limiting her function then deal with it now!

Hugs,
Amy 20 years old ROBPI from MN

Brenda - after the serial casting did she have a nighttime splint?

Amy - wow I am disappointed to hear that it won't even stop after growth stops. Yikes! that truly sucks. So Maia's nighttime splinting is going to be a lifetime thing then. nice It didn't even occur to me that you are still splinting for that at your age - even though you've talked about it... I'm sorry.

Yes Francine at 20 years and 8 months I am still splinting for my elbow contracture and maybe mine is different (I hope for all the little ones!) As I was done growing by 16 according to x-rays but didnt start splinting until 17 so maybe that makes a difference?

On a good note it eventually doesnt have to be every night! You can get down to 2 or 3 nights a week!

Hugs,
Amy

Brenda,

We did the serial casting also. However, we only did it at night and very limited daytime. It probably took a little longer than I would have if we did it 24/7, but we did get down to zero.

His contracture has returned because (1) he had a surgery with arm casted bent for a month and (2) we haven't done any splinting at night to maintain it. We will most likely be doing the nightime casting again. We were told upfront that it was something that would need to be repeated periodically, as there are no permanent solutions.

Perhaps she would be more agreeable to an arrangement where it didn't have to be worn all the time?

See that's the problem I have with Frankie he doesn't want to wear the splint he says he can't sleep with it on and since he goes to bed at 11pm and up at 6am the OT said he also needed to wear it during the day for a few hours. well that ended that. Frankie did the serial casting right after the mod quad 18 weeks in the liberty splint then into the elbow cast he did go from 55% to 30% in two weeks but because of his elbow dislocation that was as far as they would take it. Frankie feels that having his arm straight doesn't give him more function so who cares what it looks like, he says that all this trying to make it look straight stuff is cosmetic and he would rather get a good nights sleep. I can't figure out if its a teenage attitude or a boy one but he just feels this is the way he was born and he's fine with it. We got the biofeed back machine last night I ask if we could try it he said no to wait for the OT on Thur he didn't want to be bothered. Sometime I feel like I'm obsessed with fixing his arm and he just wants to be left alone telling me he's fine and likes the way he is and doesn't care if he has two working hands. I remember Dr Laurent telling me when Frankie was 4 that if they found a way to make his left hand function they would have to tie the right one down because he wouldn't use his bpi arm, he was just too well adapted.He said it was easy for kids born with bpi because they never had two hands or arms and they just learn like other kids do just in there own way but that its alot different if you had use of both arms and then lost it. I guess you don't miss what you never had, but I look at frankie and feel sorry for him I feel like life is harder for him then other kids,maybe thats because I have use of both arms. I can't imagine what it will be like when I have my surgery next month and am casted for two weeks. sorry this is so long I guess I'm just venting my frustrations life was so easy when he was young he did what you told him to do wore his splints did his OT now he wants to discuss why he has to do the stuff Hey maybe he will be a lawyer he sure is good at arguing his point. Thanks to all that took the time to listen to me complain. Mare

Mare:
I have a teenaged daughter who lost a kidney due to kidney disease. Her specialists told us that there were sports that she would not be able to play. When she was little (she lost the kidney when she was an infant), it didn't matter. Around here, everyone plays soccer, basketball, softball, and tennis. As she got older she wanted to try lacrosse (on the no list) and field hockey (also on the no list). We had to fight her (and she is really so mild mannered,usually) on this. To make matters worse, once she got into middle school, the state has regulations about single kidneyed athletes. So she was forced to wear a kidney guard to play volleyball and softball--her two sports of choice. The tears, the anger, the "nothing will happen to me"... I think it is teenaged angst! They are so busy trying to fit in, but be different (only the ways they WANT to be different) that they just don't care to hear about what we say. And truly, my kid is easy. And I still get this crud from her!

I think he'll find the myotrac really cool, though! So that may change things for him.

good luck, is all I can offer.

claudia
mom to a 15 year old and 13 year old twins... oh and the easy one! an 8 yearold lobpi!!

Mare
Hang in there! It's a teenage/bpi thing and that doubles your trouble.
At about 13 I was done! I could do what I wanted to do and did not want any focus on my arm... that lasted until I was 60... LOL...

I think he might enjoy using the myotrac because for once he is in control of his therapy. And we all know it's about control with teenagers.
Once he figures out that he will gain without pain... He will probably sit down and work with the therapist on way to use his Myotrac.

It's just a teenage thing as Claudia said.
I have a 13 year old granddaughter so sweet, cooperative, loving and funny...
ahhhh she is my easiest teenager BECAUSE I am not her mother and she just cooperates more with me... LOL...

I can't wait to hear how well Frankie does with the Myotrac.

Kath robpi/adult

Nope no splint at night after. I wonder about that??? I am afraid if we wait until she is older it will be much much worse. How can you know??

Brenda, after we serial casted we went into a belly buster splint and will stay in that most probably long term (at night only). Maia tightens up each day and then at night I heat her and stretch her and splint her. The cause of her contracture still exists - so as long as the cause still exists, nothing is going to change it permanently. And here I thought that stopping to grow (around age 18) will make it stop - but Amy's taught me otherwise.

What probably should have happened is that we should have continued to nighttime splinted after the BTL (even after the post surgery time period was done) to keep it under control but Maia's elbow was in a great deal of pain for a couple of years after so we couldn't apply even low range pressure to her elbow joint.


Message was edited by: F-Litz


Message was edited by: F-Litz

It might get worse but at her age, let her figure out what she wants! At 13 I was done too! I hated that the teachers aide would remember when I was trying so hard to forget about therapy every day. I know it was good for me but at times we just need to be left alone! Even at 17 and 18 in high school I would still intentionally forget to have my therapy done at school. Less at 18 than at 13 but it still happened.

For me, splinting is an easy choice, I actually sleep better with my splint than with out it. I would never consider wearing my splint during the day, not that splint anyway. So maybe the modifies serial casting like Lori suggested followed up by a splint at night would be the easiest route. But honestly I would give Michaela choose what she wants to do with it now. She might just need the break from things even with the risk that things get worse.

Hugs,
Amy