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2kids
03-08-2008, 04:04 PM
We took my daughter back to the orthopedic surgeon this week. The new x-ray shows that her curves have increased somewhat. In November, the curves were T-20* and L-20*. They are now T-24* and L-24* in March. Four degrees in four months doesn't sound great to me. Is that a lot?

The doctor advises a brace to try to stabilize the curves. She still has a lot of physical growth ahead of her. Her Risser Sign is 0 and she is pre-menstrual. The doctor wants to see us back for another x-ray with the
brace in 2 months.

The doctor prescribed a TLSO brace, but I am not sure what type the orthotist will make. He and the doctor have a great relationship, so I guess he trusts the orthotist to make that choice.

Yesterday, our insurance company approved the brace. Thank goodness! So, we go to the orthotist on Tuesday. Not sure what to expect.

How she will maintain her back and stomach muscle in the brace?
How long did it take your children to get use to wearing the brace?
Do you wean into it over many weeks? (I know the orthotist will explain, but I was just wondering).

Thanks for any experiences you have to share.

scoliosisat12
03-08-2008, 04:15 PM
Hey!!!
Ummm... I never really thought About my stomach in the brace... there's no diffrence to me with it.
It took me a good month to get use to wearing my brace beacause i didn't want to wear it but now i am happy i am(im still in it)
I wore it for 5 hours for the first week then every week i gained 2 hours and the 4th week i had to start sleeping in it.(its hard at first) for me to sleep in it i woke up and would take it off, its alot of restless nights at first but now i can't sleep without it. I wear a TLSO or also known as the Boston brace. I'm more use to it now but don't push your child at first then she won't wear it as much everyday. just be somewhat leanent. but makesure she keeps it on the amount of time in a day that she needs to and she may be sensitive at first like everyone on will know at school and stuff... half the kids in my grade don't know i have it yet... and to me my brace says...SHOPPING SPREE... Enjoy the brace, e-mail me at jrodslilsis@aol.com if you have any questions

Aussiemum
03-08-2008, 05:26 PM
Hey 2kids,

Your daughter's story is sounding so similar to mine! Your posts sound like my earlier ones!

The brace!!! Our Orthotist was not the least bit helpful but that's not to say that yours won't! We were basically just given the TSLO brace and see you later, I was furious at the time and complained to our surgeon about it but he looked at me strange as to what am I complaining about.

So this is what we did.....

We were told that she had to wear it 20 hours per day - every surgeon is different. We kept a little daily log of how many hours she had to wear it starting off with 1 hour and building it up by an hour a day until we reached the 20 hours. Surprisingly wearing it at night was the easiest part. It was wearing it to school that presented problems as it does become very hot and uncomfortable - but once again everyone is different and reacts differently to it.

Some of our tips - Elysia wore tops with hoods. We were very lucky that seemed to be the fashion at the time - the hoods hid the brace which tended to stick out when she bent forward. Or if no hood, a light weight small backpack (empty) this was enough to hide the brace from the back. Really though - except for seeing it at the back when she bent forward, you couldn't notice it very much under her clothes.

There is TSLO singlets available on line (not sure of supplier, someone else on the forum will be able to tell you) that have a little padding that sits under the arm pit to help with the rubbing but..... what we found excellent were "shoulder pads" the type that go inside ladies dresses and shirts that you purchase from a craft shop. Elysia could just pop that in between the brace and her skin and it worked great!

Also they do tend to get heat rash - purchase a powder available from your chemist that prevents this. I'm not giving names of products because your in the states and obviously I'm here in Australia so products will vary.

Elysia couldn't eat a large meal wearing the brace, so plan your time out of brace around Dinner times.

Stomach and back muscles - no problems - the kids are so young that they just bounce right back into things. Elysia played netball and softball and just took it off to play these sports and it never affected her except in the initial stages. Sometimes she would complain of a sore side but that's about it. She's a very sporty and active kid so I think this helped her a lot, when she was out of the brace she was certainly not sitting around but buzzing around the house or outdoors!

Even now, four weeks after her surgery, although very thin and pale looking, yesterday she actually ran a little bit - of course I was horrified to see her do that - but you can't hold them down!

You need to get your daughter onto the Spinekids website and start talking to all the other kids on there who wear braces and can offer her lots of tips and support.

Good luck!
Del
xx

ElleBelleCurvz
03-08-2008, 06:44 PM
I have wondered about stomach muscles and all, and it got me kinda confused, asked the doctor and nothing you can do, usually if you are in sports or gym they let you take off the brace--this helps flexibility alot, i can almost do splits again :) lol

It took me 2 weeks to get used to it, i was having issues that i wont get into detail on but i had horrible self esteem due to rumors going around about my brace even though i openly told everyone why i had it and what it is. Most people wean in but I kinda made a goal to keep it on, i did not wear it to school the FIRST day i got it (a friday) but i slept with it on and wore it 22 hours the following monday!

Hope this helps a bit, theres many ways you can go with braces and how you wear em and get used to em, good luck :)

Just an added note-I got my brace december 2007, and I have went thru sooo many ups and downs (as will your child) but the brace really DOES make you stronger, ive went thru such a transformation in teh last 3 months, from slightly insecure to largely insecure to perfectly fine with the way i am. Im sure it wont be easy for your child either, but with the help of everyone on this site and with time the brace will become second nature to wear :)

One more thing,, haha cant agree more with aussiemum, plenty of the kids on this site are on spinekids as well (i included) its very safe and has helped so much thoroughout the process, the girls (and guys.,..if there are any) are very very very welcoming and makes me feel right at home, so it may be an option to consider if you dont know anyone else with a brace :)

txmarinemom
03-08-2008, 07:13 PM
The doctor prescribed a TLSO brace, but I am not sure what type the orthotist will make. He and the doctor have a great relationship, so I guess he trusts the orthotist to make that choice.

...

How she will maintain her back and stomach muscle in the brace? How long did it take your children to get use to wearing the brace? Do you wean into it over many weeks? (I know the orthotist will explain, but I was just wondering).

Thanks for any experiences you have to share.

Hi, 2kids ...

I'd bet with a curve moving at 1 a month, the TLSO will probably be a Boston brace. Normal brace time for me, (I think this still holds true) at least initially, was 23 hours a day, 7 days a week (hence the 23/7 you see written so much on here).

Patients work up to the 23/7 goal that over several weeks: The skin, more so than the muscles, has to slowly learn to tolerate the pressure and rubbing from the internal brace pads. As Del said, powder can help with any chafing, but you're best off using something talc-free like Gold Bond (maybe even something more mild - non-medicated - if you can find it).

Someone PLEASE tell me they no longer recommend rubbing alcohol on chafed spots ... anyone who wore a Boston brace back in the day can vouch for the unpleasantness of rubbing alcohol on raw skin. The rest of you can probably imagine. Witch hazel wasn't quite as bad, but much better? Nah.

You want to avoid anything with large seams under the brace, and make sure it's long enough to cover the area down my the hip bones. I remember chafing under the arms, at the hip bone, around the waist pads (*especially* there). I know for me, simple girls thin cotton camisolesworked best (like pre-training bra tops sold in packs of 2 or 3 ... breasts and a bra were NOT a concern for me then. Actually they weren't an issue, period, until I bought some - LOL).

Whatever you wear under it, make sure it's either a drywick material (similar to Under Armour tactical shirts) or 100% cotton. Anything else will be a LOT more uncomfy - especially in warmer weather. Make sure to get the smallest comfortable size possible so you can help eliminate wrinkles. Wrinkles definitely cause chafing. No fun :(.

I was appproved extra time out of my brace as long as I was swimming (lowered gravity environment), but I don't know if that's still the case.

In fact, I'd be curious how much of the instructions I received in 1978 for *my* Boston brace (http://www.box.net/shared/static/3zsot864gw.pdf) is still current: Don't even ask me why I saved this ...

As far as maintaining stomach/back muscles, isometrics are great. They prescribed exercises for me where I'd tighten and push/pull away from each pad. It worked well. I also recall doing head/leg raises from both the prone and supine positions, along with exercises during my time out of the brace. While a lot of doctors are against bracing adults due to loss of muscle tone, I really wouldn't worry about a kiddo maintaining - or even building - those muscles.

Del's right ... the brace is *snug*. Smaller meals throughout the day worked better for me than 3 regular meals.

Good luck with whatever TLSO is prescribed.

Regards,
Pam

2kids
03-09-2008, 06:53 PM
Thanks all for the advice!

scoliosisat12,
I will be sure to allow her to get use to the brace slowly. Spring Break is coming up, so that should help. Or, maybe she'll start after Spring Break. We'll see what the orthotist recommends.

Del,
Interesting idea with the shoulder pads. I must remember this one if rubbing is a problem. Eating a big meal (i.e. a special dinner) out of the brace makes a lot of sense too. Otherwise, the idea of smaller snacks appealled to her. I'll have to send some to school.

ElleBelleCurvz,
Love the suggestion to check out SpineKIDS. I showed her the site last night and she thought it was terrific. Seeing how many other kids were similiar to her, made her feel better. I can see this will be a good support outlet, just as this forum has been for me. Thanks!! She is excited to get her SpineKIDS account approved. I'll send off the permission fax at work tomorrow. BTW, she noticed it was your 14th birthday today. :D Happy b-day!!

Pam,
I'll be sure to get the dirt on the rubbing alchohol and avoid lotions. Thanks for the heads up. I am not sure were to buy seamless tanks, but I guess the orthotist will have some suggestions. I'm writing this post from Stroke 'n Turn swim practice right now. I'm sure she'll appreciate her time out of the brace and in the pool from now on. ;) Sorry about your daughter's apartment too.

Thanks again for the suggestions everyone. This forum is great!

ElleBelleCurvz
03-09-2008, 07:34 PM
thank you :) and cant wait until she's posting on spinekids :) it may b a good idea for her to post in teh newbie section as well, just so the girls can meet her :D

nate03
03-09-2008, 08:18 PM
Hi-
My son was in a boston brace for about 4 months before we opted for the vertebral stapling. He has 2 of the seamless undershirts (tank top style) that we no longer need - they are "like new" and I would be glad to send them to you if you think they would fit. We got them from the orthotist with the brace.
They don't have a size on them, but he is 4"11 and about 65 lbs.
Feel free to PM me if you want them.
Also, he used powder - no alcohol, although that was suggested. He still has brownish area on his hips from where the brace hit his hip bones (he is very thin) but he didn't ever get raw skin there.

Good luck,
Cara