Help-Any advice for starting brace?

[bbrian35]

Hello all. My 11 yr old daughter was recently diagnosed with scoliosis with a T5-T9 38 degree curve and a T9-L3 14 degree curve. The degrees don't really matter for this question though. I was hoping to find some insight or advice from anyone and everyone possible about how to introduce the brace into full time status over the next 2 weeks. Getting RSC brace next Wed. Does anyone have any experiences or tips that they found to help in wearing a brace? There are so many things from clothing to mattresses to this to that. Any thing that brace wearers or parents who have had been through this can offer would be greatly appreciated. I'm pretty sure that the brace is going to be uncomfortable, at least at first. It looked like she was really "cranked" into position for the casting. She has been quite positive about the brace when we talk, but I have a feeling that talking about it and getting use to actually wearing it will be two different things. Thanks in advance!

[JulieBW]

I believe you will get better info by posting this question in the adolescent and teens section, instead of under adults. This is an easy mistake to make when you are new to forums. I wish you well, I personally never wore a brace, and things have changed a great deal sine I was a teen.

[mamandcrm]

Hi BBrian35,

Your orthotist should give you a gradual schedule for breaking into the brace. I think for G it was over a 2 week period to get her up to full-time, give or take. She started with 2 hours during the day, then 4, then 6...you get the idea. She wore it all night from the beginning because she was already used to night-time wear so your daughter may just start with breaking in at night, and then moving to daytime wear. You'll get guidance. Things that help are (1) brace t-shirts--knit rite or Boston tees; (2) memory foam mattress topper; (3) being prepared for some initial rashing--we found cortaid spray and bendryl (oral) cleared it up; (4) expect she may need adjustments--rubs here, too long there; (5) ventilation holes in the brace are a good idea--my daughter declined them at first; after she started getting rashs, we had them put in and it helped; (6) be prepared to spend some $$ on clothes!. Can't think of anything else right now, other than patience. She can do this, the first couple weeks are the hardest. Good luck

[bbrian35]

I wanted to but...

I believe you will get better info by posting this question in the adolescent and teens section, instead of under adults. This is an easy mistake to make when you are new to forums. I wish you well, I personally never wore a brace, and things have changed a great deal sine I was a teen.

I was going to post this in the teen section but it stated it was an area for those under 18 years old to post. It had a link to an adult posting area. Is it allowed to post questions such as this in that forum?

[bas2101]

Brace suggestions

Hi-

My daughter has been wearing the Rigo-Cheneau brace for 2 years. If I remember correctly, she started with 1 hour/day, and was up to about 6 by week's end. I think she wore it through the night by week 2, and was full time within a month.

When she first put the brace on, she freaked out. She felt trapped, claustrophobic, and started crying. The one thing that really made her get through this was having met another girl her age who started wearing the brace before her. Not only was this girl's brace not that noticeable, but the girl told my daughter that the difficulties of the first week, will end. My daughter kept remembering these words. By a few weeks, the brace was second nature physically-clothing-wise it took a while to get it down.

My daughter wears skinny jeans under the brace, a thin Old Navy tank under the brace (buy many-we must have 20-and don't be alarmed when they all get tiny holes in them from the straps), a thin fitted tee-shirt over the brace (girl cut, not over-sized and frumpy, but usually one size larger than her normal size, she prefers v-necks that do not go so low as to show the brace, or a neck-line that is not tight), and then either a thin somewhat fitted hoodie, or a thin button down shirt. She really prefers anything with a hood, since the back is usually the only part that shows. Now that I know the "outfit," whenever I see something that works, I buy a few. In fact, I will pretty much buy her anything that she will wear, since I think the clothing thing has been the hardest of all-being a teenager. The only thing she does that may not work for others-she does not cover under her arm where the brace rubs, which leaves under her arm red. I don't know why she doesn't want this covered-seems like it would be more comfortable. I suppose you could somehow attach something soft to this area and wash it often. There is padding over this area, but it may not be enough.

She also told her friends about the brace right away and everyone has been great about it. No problems ever. She goes to a small school that would probably suspend anyone if they ever said anything negative. Some kids are curious, and she just tells them whatever they ask, most are just respectful. Really unless they have been told she has it, or they have hugged her, they don't even know she wears it. She thinks it is noticeable, but it really isn't if you wear the right clothes. She always wears thin clothing so that she doesn't get too hot. In the summer, the hoodie turns into a vest hoodie.

I would suggest getting a bag to carry the brace in, esp. if she wants to take it off for P.E. class, exercise, or for going through airport security (does not count as a carry on since it's medical). We got a good beach bag from American Eagle with backpack straps and a cinch to cover the top.

Sleeping-a good comfy mattress.

Wash often-it ends up smelling if you don't.

Let me know if you have any other questions.


Brooke

[bas2101]

PS-

I meant wash the brace-not the mattress.

Also, we got brace tees at first that do cover the under arm area, but they gave her a bad rash all over her stomach.

Your daughter may be too young, but as far as bras, no wires. We use comfortable sports bras only.

[mamandcrm]

Just another perspective on the brace t's--G got the rash too at first, but it passed after we figured out the hydracortisone and some vent holes. I think some kids have a allergic type reaction that continues and makes the shirts unworkable and others just a temporary, skin-getting adjusted type reaction. The knit-rite ones come in v-neck. I think the Boston only in crew (hard to work with with clothes).

[MitoMom]

What to wear to the appointment

Hi,

I would suggest the day of the appointment to pick up the brace she wear sweat pants because we found zipping up jeans didn't happen.

Also, I sew, so I went to the fabric store and bought several yards of 15" circular rib knit. It looks like a tube of fabric so there are no side seams to bother John. It's usually used for collars and cuffs on stretch fabrics. It stretches in the round very nicely much like a stocking cap only your wanting it to stretch around the body. It's also softer than the fabric used on the shirt they give you with the brace. And it comes in lots of colors. (Maybe that will be my next cottage industry making cute Tube tanks for scoli kids).

I made John several rib knit undershirts using the pattern from the one knit shirt they gave us with his brace. I edge stitiched any part that I cut and stitched together the top part like tank top straps. I also sewed a little extra flap under the one arm hole where the brace came up higher so his skin wouldn't get irritated under his arm.

The orthotist will give you a wearing schedule. For the first week we were told to have John sleep in it for 1/2 the night and then take it off. By the 3rd day he was doing so well that he got really ticked off when I went to wake him up to take the brace off. After that he wore it through the night. We didn't use any special mattress.

John loved his brace. He's one of those kids who needs a lot of deep pressure (hugs) to help him focus. One thing the brace does is give lots of deep pressure. The orthotist, John's teachers and I all noticed John's arm flapping and motor overflow decreased when he wore his brace. The good news is that it stayed decreased with him even after he was told to stop wearing the brace.

[loves to skate]

I was going to post this in the teen section but it stated it was an area for those under 18 years old to post. It had a link to an adult posting area. Is it allowed to post questions such as this in that forum?

There is a parents and family section below the adult section.