United Brachial Plexus Network, Inc.

Hi everyone,
Grant LBPI (20 mo) had mod/quad @ TCH on Nov. 7th. I called Lisa T. to ask a few questions in preparation for ending the first 4 weeks of him wearing the SOL splint and transitioning to night wear only. To my surprise Angel informed me that the protocol had changed and that the two and under age group would increase to 6weeks/6weeks. Has anyone heard this? Just wanted to double check this new information and spread the word to those of you who may have this age child. Maybe someone else with a young one in the SOL post mod/quad could verify this and post their response. Thanks for the thoughts/imput!
Stephanie

Hi Stephanie

Katie too had to wear hers the 6/6 at 13 months as well as the other kids under 2 while we were there. They just changed the protocol for the capsuledesis to 8/8....

Hope he is doing well and you will see great results once the splint is off. How is he sleeping? Funny, sleeping seems to be such an important issue right now..could it be because we aren't getting to? Katie does lousy as it is but the splints make it so much worse.

Best of luck

christy

Christy,
Thanks for the reply! Grant is sleeping poorly too. The surgery seems to have come during a time of some develpomental changes and it has definetly compounded the sleep issue. We are just bearing through it and planning on "sleep-training" after he is completely out of the splint. I just sucks because he was always such an easy sleeper all we had to do was lay him down and go. Not anymore...it is a nightly battle. Poor little one's, they've been through so much already! I think he is scared because of the surgery/sleep...ever since surgery we can't leave him until he falls asleep or else he goes hysterical. I hope your situation with sleep is better than that. But, my mom always says, "Just when you get used to it, it changes." So, I am sure we will make it through this, under eye circles and all. LOL Best wishes for Katie's recovery.

Stephanie,
I think that it was a great idea for the doctors to have modified the protocol for Mod Quad. Rain had Mod Quad at 14 months old and we were instructed at the time to do 4/4. Well, needless to say that didn't work well. We had some problems at the end of the first 4 weeks and Dr. Nath instructed us to put her back in the splint for an additional week before taking her out during the day. We actually ended up doing a modified 6/4 week wearing schedule. Dr. Nath said that her rate of healing was a little slower that he anticipated, so I am glad to hear that the wearing schedule has been revised. Hopefully this wearing schedule will work well. I hope that Grant recovers well and feels like his old self again very soon. Take care,
DeShawn

We have a 11 month old who just had a mod quad/cap on Oct. 30th. We were instructed to use the 4 weeks on- 4 weeks at night schedule. When did this change? Why did it change? We don't seem to have any ill effects from the 4 week protocol. What difference will it make? Thanks for your info. Maybe we should call down to Houston. She has been out of the splint for 1 week now, I hope we are not doing irreprable damage! Why didn't they call us about the change? Please let me know what they told you! Thanks.

Did anyone find out the details on this? Does it depend upon the Dr? How about post capsulodesis? We were told they were changing them with Katie's to 8/8, one of the reasons which was it is so hard to get them to do the last 8 and the extra few weeks seems to give them a benefit.

As far as the mod were told right off the bat that under 2 was 6/6 unless the contracture wasn't severe and they might consider less then. But only consider.

capsulodesis was changed to 8/8

as far as mod quad goes - I have heard of many different versions based on each individual child and I think it's because of what particular repairs are actually done in your child's MQ- sometimes they don't do all the quad but just some.....

best to just ask your surgeon directly I would think...

-francine

When Blake had his MQ done almost 2yrs ago, it was 6/6 then for him, but the little girl that he shared a room with was 4/4. As we all know, all of our children's are different, and I would just call TCH and double check. I spoke with Angel last week to schedule Blake's Cap., and she quoted 8/8 and 6/6 for MQ.

Benjamin 10yrs old had his mod quad on Nov. 2oth he is doing 8 /8 I was told because of his age Also, his arm is at a 90 degree angle and we raise it 5 degrees a week