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View Full Version : New here... Just got our brace. Questions and Concerns



springdayzee
08-14-2008, 05:23 PM
At Becca (11) well check last summer her ped noticed she had a curve in her spine and we went and got xrays that day. We got confirmation that she had a curve and got referred to an orthopedic. We got her MRI done to rule out any underlying problems that could be causing her scoliosis. Then in January I found out about the Scottish Rite Hospital that treats scoliosis in children and got a referral to go there. We had our first appt in February and her curve was measuring at 20*. Her doc there recommended we just keep an eye on it and recheck in 6 months. So.. last week she had her 6 month check and her curve has progressed to 38*!!! Yesterday we had the fitting and brought home her boston brace. The goal is to wear it 20 hours. Now we are working on getting her used to the brace. 1 hour in the brace then a 20-30 min break. We work it up an hour at a time and then once she gets used to wearing it 6 hours she should start getting used to sleeping in it.

Becca right now is having a hard time with it. She does ok for the most part but she can't seem to get comfortable in her room. Sitting in her sling chairs hurt, laying in bed hurts, she is complaining of back pain now when she didn't have any pain to begin with from the scoliosis. Is this something I need to call the dr on? How long does this weaning in the brace process last? How long do I let her wear it for only an hour before adding another hour? I just feel so frustrated for her. She is a trooper but she is getting frustrated.

Those of you that have kids in PE... how do you handle that? She isn't able to get the brace on and off by herself yet, I can barely spread it enough for her to slide in. Do they have the nurse or PE teacher help them in and out so they can participate in PE and sports?

I feel so lost not knowing anyone going through this, so any advice support you can offer I will appreciate. Thanks

Kelly

WNCmom
08-14-2008, 06:02 PM
Kelly:

My son (then 11, now 13) wore a boston brace for six months before switching to a SpineCor brace. With the Boston, the first few days were the hardest; we definitely had tears, and it was hard to watch. He worked up to 8hours a day and then to a total of 18; by two weeks he was wearing it at night as well (the first few nights were the hardest). It's a tough time, but children do get used to it. My son took off his hard brace for phys ed at school; his school is small and doesn't have a nurse so the very kind office manager helped him at first. It wasn't long before he could take it off and put it on by himself--the brace loosens up over time, too.

Good luck and hang in there; I know this is a stressful time. I'm sure your doctor told you a brace is not intended to reduce the curve, just stop the progression. Unfortunately, the Boston did not work for my son, who is facing surgery this fall. Some curves are just relentless. He still wears the SpineCor, which is much more comfortable and can be worn during sports, but also did not help. (This is a newer, somewhat controversial brace which works better on smaller curves, but some children are seeing good results with it.) I hesitate to mention all of this, but I do wish I'd known about the SpineCor option when we were where you and Becca are, so I include it just for your information, in case you haven't heard of it.

Mary Ellen

springdayzee
08-14-2008, 06:48 PM
Thanks Mary Ellen for your reply. I have heard of the spinecor and while it looks interesting we are very limited in our options. We are TIGHT on money and the Scottish Rite Hospital is free of charge for ALL children who need it. It is a GREAT place and I have heard nothing but great things about it in what I have looked up so I feel comfortable there.

I do know that the brace is not to correct her curve but to prevent it from progressing. We will just work with it and pray that it does help!

Kelly

WNCmom
08-14-2008, 09:40 PM
Kelly--

I know I gave you more info than you asked for and I hope I didn't sound patronizing or pessimistic. I hope Becca has great success with the brace. It does take commitment and some grit, but the body does adjust, and it does get better.

Mary Ellen

springdayzee
08-15-2008, 01:55 AM
No not at all. I appreciate you taking your time to respond to my message. I have gotten bombarded by some saying that I should avoid the brace and try eastern methods even swear that seeing a chiropractor would help. *sigh* I would love to try OTHER things but seeing as the health care in this country is driven by greedy monsters and our insurance STINKS, I am just thankful that we have a GREAT place to go where Becca can get treated.

I am thinking I am going to have to call the Dr about her brace. I dunno if I am just not getting it positioned correctly but she has an area on the top left that she says is digging into her. *sigh*

Kelly

WNCmom
08-15-2008, 10:01 AM
When we first got the Boston brace, the doc sent us back to the brace shop right away to have the bottom edge carved out to fit, and also I think he did something with the top under the arm (I think reduced the height a little?) to keep it from digging in so much. So your doc may be able to help quite a bit.

sparklegirl59
08-15-2008, 11:17 AM
i'll share with you the story of the day i first put my brace on.

it was in the winter, and we went to the brace shop and got me measured for the brace. now, i didn't even know what a boston brace looked like.
so, i was getting measured away, and the next week, i had an appointment to come pick it up.

now, it's the day i have to get my brace, i'm cold, scared, nervous, sad, mad, every feeling possible with no anxiousness at all whatsoever.
i sat down in the chair, and the door flew open, and all i saw was this big piece of plastic! i lowered my face with the most depressed feeling in my whole entire lifetime, and said, "do you expect me to wear that thing, and sleep in it???" "how will i even be able to move in that thing???" "how will i even be able to just SIT DOWN???"
"don't you think it's a little to STIFF???"

i cried for 2 weeks straight. from the minute i woke up, to the minute i laid down. the shower, breakfast, lunchtime, dinner time, i think i even cried in my sleep! i'd always have dreams about how it would ruin my life. i STILL cry numerous times in a week, and i never in my life knew that it would be THIS bad!

i go to the doctor in two months and i'm hoping for some kind of good news.

now, i can actually put the brace on by myself and make it as tight as it will go. i sometimes still have my mom to do it for me, but i really don't need her to anymore. she will get used to it soon. it took me about 2 months to really get the feel of putting it on all by myself. just make her practice a little everyday, and soon she will get the hang of it. it's really not too difficult to spread it apart, but once again, that's because i'm used to it.
i hope things work out well soon. :) my top curve is barely even there anymore, and my bottom curve is probably alot under 20*, but last time i went the bottom was twenty, so i know it has gone down alot, and my rib hump is barely even there anymore either. i have been wearing the boston brace for ten months now.