in-brace correction of compensatory curve

[leahdragonfly]

Hi everyone,

My 6 y/o daughter started wearing a boston brace about 3 weeks ago for thoracic 26 degrees, with a lumbar compensatory curve of 15 degrees. We were recommended to have Leah wear the brace 16 hours/day. We are getting about 14 hrs/day on school days and about 18 hrs/day on the weekends. We are trying hard to avoid sending her to school in the brace--she is adamantly against wearing it at school. Since her curve has -so far- not progressed since her diagnosis in January, we felt that part-time wear was acceptable.

Today we had our Shriners appt and the first in-brace x-ray. The results: thoracic 13 degrees, lumbar was not measured or mentioned, but it looked slightly worse to me, side-by-side with the original x-ray. The MD's seemed less than thrilled with the correction, told us we have to make the brace WAY tighter (it is not loose by any means, believe me), and told us we should be making her wear it more, ie, to school. I am so upset now, because it has not been easy to get the amount of wear time we're getting.

My question is, should we be worried that there appears to be no correction at all of the lumbar curve?? I left a message with Dr d'Amato's nurse, but wanted to see what people here thought.

Thanks for listening,

Gayle

[txmarinemom]

Hi everyone,

My 6 y/o daughter started wearing a boston brace about 3 weeks ago for thoracic 26 degrees, with a lumbar compensatory curve of 15 degrees. ...
Today we had our Shriners appt and the first in-brace x-ray. The results: thoracic 13 degrees, lumbar was not measured or mentioned, but it looked slightly worse to me, side-by-side with the original x-ray. The MD's seemed less than thrilled with the correction, told us we have to make the brace WAY tighter (it is not loose by any means, believe me), and told us we should be making her wear it more, ie, to school. I am so upset now, because it has not been easy to get the amount of wear time we're getting.

My question is, should we be worried that there appears to be no correction at all of the lumbar curve?? ...Gayle

Gayle, I know it's difficult to see her upset about wearing it to school, but playing "catch up brace time" on weekends isn't the same as consistency. Thank God you're arguing with a 6 year old vs. an 11 year old, and logically, I'm sure you know "what you've been able to get" has no real correlation to what the doctors prescribed for wear.

You and I both wore a Boston, apparently, and you *know* you learn to tolerate (I am in NO way saying it's pleasant) tightening/new pads when needed.

Personally, IF the brace is too loose - and the lumbar is a compensatory - I wouldn't worry too much over your lay visual of an increase. If the brace is too loose/unevenly adjusted you can actually create a visual (and hopefully temporary at this point) increase.

I *would* focus on (and they should have *shown* you, IMHO) how much more to tighten the brace - and stick to it.

We all hate to see our kids in distress, but hopefully you're just killing time until VBS.

Leah will survive this, and so will you, hon.

Regards,
Pam

[nate03]

The MD's seemed less than thrilled with the correction,
Gayle

Hi Gayle-
I'm not sure about this - but isn't a 50% reduction of the curve in brace the norm/expectation?
I am hoping Leah will be finishing with school soon for Summer? I am sure it will be a little easier to get in the full 16 hours then (sort of!!).
I sent you an e-mail............
-Cara

[mariaf]

Hi Gayle,

Sorry to hear you are going through this - I think Pam made lots of sense about the need to tighten the brace and that this is "just temporary" so although it is difficult to see our kids in distress, it will pay off in the end.

I am curious (and I think this was discussed before) why they did in-brace x-ray vs. out of brace x-rays. When David was braced (age 2 - 5 1/2) they always took out-of-brace x-rays to monitor him.

As Cara said, summer is coming soon so if Leah needs 16 hours in the brace that should be much easier - figure they sleep 8-10 hours, etc.

Hang in there - you're doing great!

[emma12]

Hello,
I can provide my daughter's experiences with a compensating lumbar curve. I have posted this all somewhere else, we've had a long story, lol !!! I'll try to make it short.

She was first diagnosed at age 7, curves in the upper teens. Lumbar was always compensating (no structural elements). Got Boston brace at age 9, to wear 23 hrs/day. Refused to wear to school, but did wear most of the time out of school. However, someone above posted maybe in summer you'll have better luck, we didn't. It's too hot, or we spent lots of time swimming...so, actually she probably wore less in the summer than during school. At age 10 1/2 or so, we got Providence brace, (curves now in 30's) which is night time only. Even less compliance with this, I don't think she ever wore it all night long (did it ever fit right? I suspect this now--and should have pursued more aggressively at the time, but, 9 months later when her doctor finally questioned this, at my insistence, her curves were already too large...). Very rapid progression (big growth spurts), at age 12 her curves 61T and 53L, to fusion surgery last August T2-T11.

In-brace xrays always showed a greater than 50% correction on both curves (in fact, the compensating curve always was reduced to about 5 degrees). And, I agree with someone who posted above that we were always told a 50% correction is what they hope to achieve, and anything greater than that is really good. So, I am a little surprised that the doctors aren't too concerned with seeing no correction in the compensating curve, our braces always were padded to correct both curves. Perhaps it is because they are just hoping to stabilize the curves until she's is eligible for VBS, and at this point the compensating curve isn't that big of a deal.

We got in-brace xrays initially to make sure the brace was doing what it was supposed to. Later xrays were always taken out of brace.

Good luck to you and your daughter, I know first hand the trials of getting compliance with brace wear, it isn't easy for some kids. Hopefully, VBS will become a viable option for you and her.

[leahdragonfly]

in-brace vs. out-of-brace x-ray

Hi, thanks for the replies above!

Pam,

I really appreciate your post. It's hard for me to separate what I know in my head (she needs more time in brace) with what I feel in my heart, especially since I wore a brace for two years. I guess if her curve was worse and/or we didn't have VBS planned, I would have an easier time forcing the bracing issue. I am also discouraged because I had the brace as tight as I was instructed by the orthotist. When I tighten it to the 'new' marks, Leah says she can't breathe, and it looks exceptionally tight. But my husband and I told her yesterday that she simply has to wear it that tight.

Maria,

This was Leah's first x-ray in the brace (which she got it about 3 weeks ago), to establish how much correction it is giving her. That was the reason for in-brace. Her last unbraced x-ray was with Dr Betz in March, so she will be due for another in June. Leah will still attend childcare during the summer at the school where she is just finishing up Kindergarten, so no luck with that.

Shriner's called back today to say they will get back to me about the lumbar curve issue. Thanks for listening, I feel a little better being able to whine here!

Gayle

[txmarinemom]

It's hard for me to separate what I know in my head (she needs more time in brace) with what I feel in my heart, especially since I wore a brace for two years. I guess if her curve was worse and/or we didn't have VBS planned, I would have an easier time forcing the bracing issue. I am also discouraged because I had the brace as tight as I was instructed by the orthotist. When I tighten it to the 'new' marks, Leah says she can't breathe, and it looks exceptionally tight. But my husband and I told her yesterday that she simply has to wear it that tight.

I'm glad my "tough love" came across as intended, Gayle.

It must be *incredibly* difficult to separate the memories of being a braced child and having to force your own child into one - knowing full well how it feels. Kids are also smart enough (even at an early age) to know *exactly* where our buttons are located .

Surely the new tightness is uncomfortable for Leah, but logically, you *know* she can breathe. In no way am I saying that makes it any easier to hold your stance when she claims she can't.

Just curious ... I was braced 23/7, but could have all the time I wanted out of brace when swimming (actual *swimming ... not laying out, not screwing around on the slides/diving boards). Is this still the case?

It's great you and your husband are on the same page, and I'm really proud y'all took that joint approach with her. I can't even imagine how hard it was to say those words with conviction - but that's really what's important right now. She has to *believe* you mean what you say even if it's ripping you in two internally.

Oh, the joys of parenthood. We could probably all win Oscars for the performances we manage to pull off at times :-).

Hang in there. It IS temporary, and you CAN survive this (and, yes ... she'll forgive you - even probably *thank* you later) for giving her the best shot possible for successful VBS.

[mariaf]

Thanks for listening, I feel a little better being able to whine here!

Gayle,

You are most definitely NOT whining :-)

My heart goes out to you for the position you are in right now - the operative words being "right now".

My grandmother had a saying for times like this. I'm not sure if your situation fits it perfectly, but at times when my teens wanted to do something I knew wasn't safe or a good idea, and they thought I was the worst mom in the world for saying "no", I thought of my grandmother's words "better you cry now than I cry later".

I can't tell you how many times I had to repeat those words to myself as one of my kids gave me that "you're the meanest mom on the planet" look!

[mariaf]

P.S. Thanks for clarifying the in brace vs. out of brace question, Gayle. My guess is that so long as Leah's "in brace" xrays do not show progression that would be the most important thing.