Cheneau Brace Schedul -- 16 hours??

[LMB123]

My 13 year old daughter was diagnosed with Idiopathic Scoliosis two months ago -- she has a 23 degree curve. We were fitted with a Cheneau Brace by Luke in Virginia. She has been wearing the brace about 16 hours per day.

My daughter is very worried about wearing the brace to school and has only worn it for once during the school day. We are considering having her wear it for 15 hours per day on school days (3:00 pm - 6:00 am) and full time on the weekends. Does anyone know if this is enough to hold the curvature in her back? She would average about 18 or 19 hours per day.

I would appreciate any advice -- we don't want to force her to wear the brace and she is very concerned about fitting in during middle school. Thirteen is such a tough age!

Thanks,
Linda

[LindaRacine]

My 13 year old daughter was diagnosed with Idiopathic Scoliosis two months ago -- she has a 23 degree curve. We were fitted with a Cheneau Brace by Luke in Virginia. She has been wearing the brace about 16 hours per day.

My daughter is very worried about wearing the brace to school and has only worn it for once during the school day. We are considering having her wear it for 15 hours per day on school days (3:00 pm - 6:00 am) and full time on the weekends. Does anyone know if this is enough to hold the curvature in her back? She would average about 18 or 19 hours per day.

I would appreciate any advice -- we don't want to force her to wear the brace and she is very concerned about fitting in during middle school. Thirteen is such a tough age!

Thanks,
Linda

Hi Linda...

This is something you need to discuss with your daughter's specialist. Studies have been inconclusive, but in general, the more hours per day, the higher the likelihood of success.

Regards,
Linda

[mjpj]

Hi, My daughter is also 13 and started wearing her brace to school this year. I went the other route and basically pushed her out the door in tears and told her we would see how it went. I felt like she needed to give the brace wearing a try. I worried about her all day, but after school she got off the bus and said it was fine. The only adjustment we made was to have her PE scheduled at the end of the day so she could dump her brace off in the nurses office and then not have to worry about getting it on during passing period after PE.

Maybe that sounds harsh, but I know she is a tough kid and that her friends would support her. We did make sure many of her good friends had spent time with Madeline wearing her brace prior to sending her to school, so that they were not surprised. That helped. They scold her now if she isn't wearing it, even for special events.

Our orthotist said our daughter should shoot for 20 hours/day and will probably end up at less than that, because kids are good at finding times when they don't want to wear their braces even after school. He was right. She can suck up plenty of time in the shower, getting ready in the morning and exercising. On top of that she often wants time out of her brace on a weekend to go skiing or to a party or something special. Anyway, even though it was really rough the first day, I know she feels like school is an easy time to wear her brace compared to out of school when she might be missing something fun.

Our orthotist is also a firm believer that anything less than 16 hours is not good enough. Madeline was coming back reporting about 14 to 15 hours a day at first, and he was not satisfied. I have heard Luke is very good, so you should talk to him about it. He will give you a good opinion.

[leahdragonfly]

Hi,

I am actually really surprised that your daughter, at age 13, was prescribed a brace at all with a newly-diagnosed curve. That is really somewhat outside of the typical guidelines in my opinion. Normally a 13 y/o might not be braced until closer to 30 degrees, unless 5 degrees of progression was demonstrated. Since she was just recently diagnosed, it sounds like she's just had the original curve measured. Since she is resistant to wearing the brace to school, if it were my child I would be inclined to ask the orthopedic surgeon if she could be observed and have a new x-ray in 4 months to check for progression. Not every case automatically progresses, especially with a smaller curve of 23 degrees. And if she has started her periods already, that would be another strike against bracing at this juncture.

Another option would be to ask your orthopedic surgeon if a nighttime brace (such as Providence or Charleston) would be appropriate for your daughter's curve if indeed a brace is felt to be indicated. That way she would only need to wear it for 8 hours at night, and skip the whole part about wearing it at school. While many kids do seem to adjust, I promise you they do not enjoy wearing it to school. I wore a brace to jr high at age 13 and believe me, I was mortified.

My personal opinion as a parent of a child with scoliosis is that wearing a brace to school, especially for an adolescent, should be held as a last resort if bracing is truly indicated and night-time bracing is ineffective. BalletMom's daughter is an excellent example of a child who has been braced successfully with a night brace. I am quite sure she is happy she never had to wear it to school!!

Good luck, and please let us know how your daughter is doing.

[mariaf]

Great post, Gayle.

You wrote:

"While many kids do seem to adjust, I promise you they do not enjoy wearing it to school."

Just my opinion, but as someone who has been a parent for 23 years, I completely agree. My daughter still had braces on her teeth as she was finishing 8th grade getting ready to enter high school - and she told me that if the orthodontist didn't remove them before she started high school, she'd get a pair of pliers and do it herself. Even 'tough' kids (and my daughter would definitely fit that bill) still don't want to be different.

Linda, I also agree with Gayle's reasoning that we don't yet know what your daughter's curve is doing (if it is progressing or not) since she is newly diagnosed. If she's almost done growing, then the curve may not progress even without bracing. Most doctors will listen to your views and hopefully consider, as mentioned above, perhaps taking an x-ray in 4 months to check for progression. Maybe your daughter could wear the brace as much as she can until the next x-ray and take it from there. If it were my child, I'm pretty sure I wouldn't force her to wear it to school.

Best of luck and please keep us posted.

[Ballet Mom]

My 13 year old daughter was diagnosed with Idiopathic Scoliosis two months ago -- she has a 23 degree curve. We were fitted with a Cheneau Brace by Luke in Virginia. She has been wearing the brace about 16 hours per day.

My daughter is very worried about wearing the brace to school and has only worn it for once during the school day. We are considering having her wear it for 15 hours per day on school days (3:00 pm - 6:00 am) and full time on the weekends. Does anyone know if this is enough to hold the curvature in her back? She would average about 18 or 19 hours per day.

I would appreciate any advice -- we don't want to force her to wear the brace and she is very concerned about fitting in during middle school. Thirteen is such a tough age!

Thanks,
Linda

Hi Linda,

I will bump up a study on bracing in the research section. You can review the video presentation from the 2010 POSNA meeting that was a presentation on a bracing study done by Scottish Rite Children's Hospital in Texas by following the directions for the link to POSNA.

Scottish Rite states that bracing during the day in an upright position is essential for the effectiveness of full-time bracing....i.e. during school time. Unfortunately. Also, with the fifteen hour bracing schedule you are proposing, you aren't leaving any hours in the day for her to get regular daily exercise in...which is very important...especially when a child is being braced thoughout the day. You don't want the muscles in her back to atrophy.

Kudos to your daughter for already wearing the brace for sixteen hours per day! It sounds like she has a brace she can tolerate which is great news. :-)

Good luck to you both.

Here's the link to the bracing study presentation. The comments about upright wear are at 4 minutes and 6 minutes in to the presentation:

http://www.scoliosis.org/forum/showt...is-(The-Proof)

[LMB123]

Thank You!

Thank you for the feedback regarding bracing for 16 hours per day. Fortunately, we have made some progress with my daughter. She is now wearing it for 3 hours per day during school and 14 hours after school. She is able to maintain this schedule and it doesn't bother her too much during the school day. We had a follow up with our doctor and the in brace x ray showed a 30% improvement with the Cheneau Brace. The doctor was very happy with this number -- She has a 26 degree curve out of brace and 17 degree in brace. He also thought the Cheneau Brace seemed much more comfortable, than the original Boston Brace he recommended. I am sure my daughter would have been uncomfortable and hot in the Boston Brace, so this seemed to work out well.

Thanks again for the information.

LMB

[mariaf]

We had a follow up with our doctor and the in brace x ray showed a 30% improvement with the Cheneau Brace.

Hi Linda,

I'm not questioning your doctor, but I am a little confused because all of the doctors I've seen over the past decade have given me the impression that they were aiming for at leat 50% in-brace correction. Maybe it's different with the Chenaeu - I admittedly am not an expert on that particular brace :-)

In any event, best of luck to your daughter!

[3sisters]

more correction

It's great that she's wearing it, and getting some correction. We have a Cheneau, as well, for my 12 1/2 yr old. Although my daughter's curves are more severe, we are working towards over-correction. We have obtained it for her lumbar. It takes a few weeks for the bones to move in a Cheneau. But, once they do (about six weeks) you can have an adjustment made to the brace. I recommend visiting your orthotist a few times in the first few months and strive for 0 degrees, or over-correction, if possible. I regularly take her to her orthotist, and he re-forms and pads the the brace more aggressively each time. good luck! We've had different docs tell us 20 and 23 hours. We are currently working more on 20 hrs. It's a hard balance between doing good with a brace, and driving her nuts with the brace

[Pooka1]

Heh Emily,

Can I ask you a question?

Since you progressed from below the angle that is widely considered to be protective against progression to surgery territory, what will you advise you daughter to do if she is at 33* at maturity? Normally, the paradigm would be that she is pretty much out of the woods but then there is your extraordinary case.

Just curious.

[rohrer01]

Heh Emily,

Can I ask you a question?

Since you progressed from below the angle that is widely considered to be protective against progression to surgery territory, what will you advise you daughter to do if she is at 33* at maturity? Normally, the paradigm would be that she is pretty much out of the woods but then there is your extraordinary case.

Just curious.

Pooka1,
I know you didn't direct this question to me, but thought I would just add something here being that I am one with a "subsurgical" curve at skeletal maturity (upper 30's). There may not be a thing she can do if she reaches 18 with a 33* curve. IF she qualifies for VBS BEFORE she turns 18, I would recommend that, just from personal experience. They didn't have VBS when I was a teen, otherwise I WOULD have had that done. The docs were twiddling their thumbs as it was whether or not to operate. I think they should have, since every one of them said that I WOULD progress. How did they know that back then? It seems to me that there have always been a couple of different schools of thought in this area of progression. I notice more people getting fused with smaller curves that live in Arizona (>40*). That's where I lived at the time. I'm sure if I lived there still, I would be offered the operation. Just my opinion.

[Pooka1]

Pooka1,
I know you didn't direct this question to me, but thought I would just add something here being that I am one with a "subsurgical" curve at skeletal maturity (upper 30's).

Yes but upper 30s at maturity is not considered protective against future progression to surgery territory. Emily was in the upper 20s at maturity which goes against the paradigm in a dramatic fashion.

So whereas it cannot be said to be jaw-dropping that you are progressing and are near surgery territory, it is most definitely jaw-dropping and drooling spilling that Emily is. There may be no angle protective against progression to surgery territory either for the structural curve or the compensatory curve as we have seen.

[3sisters]

Heh Emily,

Can I ask you a question?

Since you progressed from below the angle that is widely considered to be protective against progression to surgery territory, what will you advise you daughter to do if she is at 33* at maturity? Normally, the paradigm would be that she is pretty much out of the woods but then there is your extraordinary case.

Just curious.

Pooka, I'm sorry I just came across this! I have been reviewing my old xrays and although I don't have my very first one, I do have everything from age 18 on up (when I became an adult, and the xrays fell to me, I guess.) I found that there are actually two sets of marks on my 18-yr old xrays that were taken when I was applying to join the service. By a general orthoped then (for my entrance physical) they were measured in the upper 20s- therefore, I passed. Many years later, a different doc measured the same curve on the same xray at 40+ something... So, I was never as well off as I thought but lived in happy oblivion for a while, I guess, and got to be in the Army.

Yet, STILL, scoliosis thoughts were not in my mind and I forgot all about the double readings, and didn't realize people progressed, etc. I honestly hadn't really thought of scoli since I was a teenager, so never thought to find out what the numbers meant. (Pre-internet research, pre-my own child getting scoli... )

I don't know what the real progression cutoff is supposed to be for most people- if it was 30 for me, I sure did pass it, and progressed some as would probably have been expected- just never by me, since I was blissfully ignorant for many years. If my daughter was at 33 at maturity I would follow her very closely, through xrays, to see if there is real progression or margin or error. If the progression was very slow I would advise that she put off surgery for as long as it isn't affecting her quality of life or moving into double-major/ structural lumbar territory. I agree with your many posts about protecting that lumbar movement- huge, IMO, too.

So, my case isn't extraordinary now in one common way; mis-read xrays by non-specialists.

My answer probably doesn't help much, but at least you know I didn't ignore you on purpose

[Pooka1]

By a general orthoped then (for my entrance physical) they were measured in the upper 20s- therefore, I passed. Many years later, a different doc measured the same curve on the same xray at 40+ something...

Hi Emily. Wow. This spread is remarkable. Is there any chance you can post that film? I just think it might be amazing to see.

So, my case isn't extraordinary now in one common way; mis-read xrays by non-specialists.

Well I still think it is a great data point that you were 40+ at 18 yo and only progressed less than 10* since then. That's good to know. We have other folks who were at 50* or better and held there for decades. So progression to surgical range is not inevitable in larger curves. The main issue at that point is to also watch the lumbar so you never lose that when starting with a T curve as you mentioned. Losing lumbars under an originally structural T curve seems like it is totally avoidable and should never happen.

My answer probably doesn't help much, but at least you know I didn't ignore you on purpose

Every case is interesting! Yours is still interesting. Maybe because you progressed so slowly that your daughter either won't progress or will do so only very slowly.