M.S. asks from Troutdale, OR on June 16, 2012
Brace for Scoliosis: What to Expect
So my little guy 13 months) went to Shriner's on Wednesday and they said he needs to be in a body brace. He was measured and should get it in a few weeks. It is a Boston Soft Brace. I was wondering if any of you have had child in a body brace and what was the adjustment period like? He is going to be in it for 18-24 months. If we dont' leave it on, or he won't wear it, then he will have to be surgically cast, so we dont' want to have to go that route! But, anyway, I would love some heads up about what to expect. DS is impatient, intolerant, and stubborn, so I don't expect this to be a pleasant experience, but I love him, so I we have to do what we have to do. Thanks so much for any info you have.
So What Happened?™
Thanks so much for the support. I really appreciate it and can use it so please keep it coming. Yes, my husband is here to help, but, he doesn't like to do anything that the kids don't want or like, so this process is going to be extra hard on me as I have to make both him and the baby do it.
He has been seeing a physical therapist since he was 6 weeks old for the torticollis and scoliosis, and he has been seeing a chiropractor who specializes in babies since he was 10 weeks old. At this point, its either as brace, cast, or crooked baby/child/adult. They don't need to do surgery on the spine itself because they can't find any reason for the curvature, but personally, I think that he just grew that way inutero. He has been in pain pretty much since he was born and so I know he is not going to be easy to put the brace on, but he can take it off to bathe, swim, etc, but not if we have to cast him, then it has to stay on all the time.
Again, thanks for the support and the advice, if you have any more, please let me know.
E.D. answers from Seattle on June 16, 2012
Oh boy. I read your title and shuddered, as my sister had a brace for scoliosis...in middle school. I'm so happy for your son (and you!) that he gets to do his brace wearing before the age of fitting-in-above-all-else hits.
((When I was a teeny one, my skull was all sorts of funky and my mama had to put me in a special forming helmet for many months. I don't have even a faint recollection of it now (and my skull is wonderfully shaped, thanks be).))
Now, I'm not sure my sister's brace was the same as your son's will be. In fact, the one your son will wear looks much more flexible and comfortable. For my sister (impatient, intolerant, stubborn), sensory stuff was BIG. And, apart from the social stigma that resulted from being 'different', the actual rubbing, chaffing, and general discomfort of having something around her skin - it drove her up the wall. And reasonably so. Heck, I feel uncomfortable wearing a bra all day...let alone a brace.
Some things that might help?
- helping him focus on different parts of his body. "Let's stretch our toes. One, two, three, four, FIVE toes! How long can we make our legs? Here, I'll help you...stretch (that's it!)...stretch...(wonderful!)...stretch those legs...(fantastic job baby!)"
- these little ones are in an imitation zone. Would it help if you wore something around your waste for some days before he gets his own? And then if you introduce it as a tool that's going to help him grow up strong? Not sure if that would work, and I'm sure it's not a sustainable plan, but to help with the initial transition? If he sees his mommy do it, he might be more excited about his own?
- I could be wrong, but this might just be as hard on you as it is for him. We do take on our children's discomforts, no? As such, and if so, be alert to your own needs and limitations. Self care is a must in any/every situation, and is especially important during transition, stress, and times when we must reach deep inside of us for a long haul.
- Every day will be different. The only constant is change. Your babe might seem at his wits END for a while, and then, as suddenly as it came, he might just get used to it. A part of the day. Matter of fact. Like brushing our teeth. Or wearing a diaper. Or putting on socks. And, as with all of those things, during different developmental phases, our kids react/interact with their body and environment differently.
- Do exactly what you're already doing: Reach out, find folks who understand, be real, be heard.
- If you are in a partnership, make sure to stay on the same page and try to help each other to help your son. In our home, stressful situations with our kids have been rough on our relationship. We've needed to up our level of responsibility to ourselves and each other.
I'm sending one million cups of tea and hugs. I hope this ends up being less of an issue than one expects. Best of luck!!!
3 moms found this helpful
M.J. answers from Milwaukee on June 16, 2012
I know nothing about having a 13 month old wear a brace like that. I Googled it because I had no idea what a Boston Soft brace looks like. Just wanted to send virtual hugs to you. Sounds like it's going to be a tough transition. Hope all goes well. :)
1 mom found this helpful
T.A. answers from Seattle on June 17, 2012
Can't help with the brace but have you tried chiropractic? Depending on the degree of the curvature it can be a huge help.
A.V. answers from Washington DC on June 16, 2012
I don't have first hand info, but I did know 2 kids in HS who needed braces and then later surgery. Both the kids had custom-made shirts/dresses to accommodate the brace. I'd ask the docs if they know a good tailor. It might help make your son less self-conscious.
N.D. answers from Portland on June 20, 2012
i don't have a lot to add except that i wanted to throw out another option out there. i have scoliosis too (19%) but i am not yet at a point that i am ready to brace. i met one of the doctors that engineered this bracing system. http://www.scoliosissystems.com/Spinecor-Scoliosis-Brace....
the idea is that it helps the muscles that are overreacting to calm down and strengthen the ones that are weak.
M.C. answers from Washington DC on June 17, 2012
I don't have personal information about this specific brace, but was in several casts throughout my childhood. So I am offering up some things to keep in mind.
- Can it be taken of for baths? If yes, remember to use a soft sponge to exfoliate his back and belly. Remember to apply lotion.
- Clothes - you will want some larger shirts
- Carseat - a narrow carseat will not be the most comfortable. Hopefully yours is pretty wide. Sitting reversed, will help him be at an angle. It will help him be more comfortable than forward-facing and straight up and down. It will take some of the pressure off when he is in the sitting position.
T.F. answers from Dallas on June 17, 2012
My niece had one in middle school. She hated it but wore it faithfully.
In the end, she stil had to have the surgery. Now she's 18 months post surgery and doing great.