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DeniseC
01-05-2012, 08:37 AM
I have tried to read most of the threads on here before posting and we have tried things I have found on here. My daughter is almost 12 and has been wearing her brace for a little over 2 months. We have been trying to work her into more time and we are making her sleep in it. She is still not wearing it to school yet. It is the hard shell brace that I think is called a TLSO brace. She is fighting wearing the brace and that is getting worst instead of better. She complains about it hurting her. She also has trouble sitting in it or going to the bathroom with it on.

It is a real battle to make her wear it. She does not want any one to know and it is almost impossible to talk to her about it. A couple of her friends know and they have been really supportive, but she won't even talk to them about it. She thinks the brace makes her a loser and a freak, which we all know is not true.

We have gone to numerous fittings and at one point there was a concern that the brace was made incorrectly, so for about a week she did not wear it. The xrays showed that the brace is working (a 41 without the brace to a 13 with the brace on). Since then she has fought the brace even harder. Nights are the hardest. None of us are getting very much sleep.

I have tried to get her to read the forum here, but she won't yet. I kept hoping she would eventually start reading it some.

Any suggestions? We have tried everything we can think of.
Thanks,
Denise

Ballet Mom
01-05-2012, 09:05 AM
Hi Denise,

Your daughter's brace is achieving a great correction! That's good news. It seems odd that your daughter has a hard time sitting in it. That is not good because a brace that is too uncomfortable won't be worn and won't work if it isn't used consistently. I would definitely keep working with the orthotist to make sure the brace is wearable for your daughter. Maybe the length is too long and could be shaved down on the bottom edges....or maybe the orthotist has simply marked the straps at too tight a spot in order to achieve an excellent correction. Perhaps the orthotist and orthopedist could relax the tightness a little in order to make it a little more comfortable and still achieve an appropriate correction.

Who is concerned the brace is made incorrectly? If the doctor/orthotist think that, maybe a replacement brace is in order...although if that is true, I'd go to a different orthotist. Make sure her orthopedist knows she is having trouble with the brace. I would think they'd have you bring it in to see what's going on with it.

Ballet Mom
01-05-2012, 09:41 AM
Oh, just a thought. Since your daughter is having an increasingly difficult time with wearing the brace, it is quite possible that she has continued to progress since her last x-ray since she hasn't been wearing the brace enough hours in the day to hold a curve. I would definitely contact her orthopedist...when is her next x-ray scheduled for?

TAMZTOM
01-05-2012, 10:02 AM
The xrays showed that the brace is working (a 41 without the brace to a 13 with the brace on).

Fantastic correction. However, IMO (parent of a scolio kid, non-medical) you need to ensure that the correction is not being achieved at the expense of damage elsewhere (e.g., rib distortion, sternum compression or compensatory curve exacerbation). My own daughter never complains without a genuine, insightful reason.

Pooka1
01-05-2012, 10:12 AM
Kids can progress even when wearing the brace as directed. My daughter continued to progress in the year she wore her brace as directed. If there is progression, you will never know if it was due to the curve being brace-resistant or due to non-compliance and it is VITAL you never blame your daughter for any progression due to lack of compliance.

Bracing is still in the research stage (e.g., BrAIST study) and is NOT proven in AIS. The jury is out on other cases like Chiari/syrinx because it hasn't been studied enough as far as I know so there is hope there. There is evidence bracing WILL NOT WORK in certain scoliosis situations including Marfans Syndrome.

Please ask your surgeon about the evidence case for bracing AIS. Top (and in fact all) surgeons will admit there is no good evidence bracing works in AIS though they hope some day they will figure out how to make it more effective.

If you cannot gain compliance with your daughter and she has AIS and her curve progresses, you can never blame non-compliance. There is no evidence to cite.

Ballet Mom
01-05-2012, 11:07 AM
My comment about possible progression was certainly not in order to blame Denise's daughter for brace non-compliance. A brace that is too tight and uncomfortable to wear is a poorly constructed brace and if the curve is progressing, it's going to make it that much more uncomfortable. You would certainly hope parents wouldn't blame their kids if their curves progressed, no matter the cause.

In addition, the reason they put sensors in the brace studies is because the answers of kids reporting whether they were compliant or not are often incorrect and unreliable.

LindaRacine
01-05-2012, 05:31 PM
I once heard Robert Winter, who was a great brace proponent, talk about bracing kids. He said that the one time he would not push a kid about wearing a brace, is when it has the potential to have an adverse effect on the parent/child relationship. While it's certainly better to not have scoliosis surgery than to have it, it definitely is not the end of the world.

Pooka1
01-05-2012, 05:38 PM
Beyond the parent/child bond, there are serious ethical questions raised when suggesting such a difficult treatment in the face of little evidence of efficacy.

I am convinced parents are not properly appraised of the evidence case for bracing in general. If they were, I think there would be less cases of parents scaring the crap out of children about surgery in order to gain compliance with wearing a brace. And when those kids need surgery, they are already around the bend with fear because of it. I don't judge parents for doing so if they are operating under the false assumption that bracing is a proven treatment and not still a research area. But once apprised it would be morally remiss to force compliance in any way.

ETA: I also don't judge parents for being around the bend scared about surgery for their children. That is normal. But perspective always. I was much calmer for the second kid compared to the first because I had evidence of a quick recovery, a stellar result, and an experienced surgeon telling me that was likely the only back surgery for the first kid. As you say, it is not the end of the world by a long shot. My kids say they don't think about scoliosis any more. Priceless.

jrnyc
01-05-2012, 05:53 PM
a suggestion just from someone with a lotta years
working with kids...and the last years with them as a licensed social worker...

does your daughter see anyone she can talk to who is completely objective...?
that is, a counselor, therapist, social worker, etc....
someone she can say anything to, express her feelings,
maybe some anger in there at why her, why now, why this, etc....
it might help, doubt it could hurt...

best of luck...
jess

mamandcrm
01-05-2012, 07:09 PM
Hi Denise,

12-13 is a tough age to start the brace. Kids are so much more self-conscious at that age. Emotional issues aside, however, I am wondering about your comment that the night-time is the hardest time. No one is seeing her then, so is that an issue of discomfort or defiance, or a bit of both? If mostly the former, then my suggestions are four: (1) get her a memory foam mattress topper--3-4 inches in depth; (2) try to identify the painful/irritated areas, then talk specifically with your orthotist about them; (3) send her to bed with the brace looser, and try tightening it a bit as she sleeps if you can, or just let her get used to it for a bit and tighten a fraction every couple days; (4) Tylenol PM for a couple weeks to see if that helps ease the discomfort and send her to sleep. With her mentally resisting, maybe these won't get you far, but perhaps she will see that you are trying to meet her half-way and will give it a chance. Good luck to you.

jrnyc
01-05-2012, 07:19 PM
emotional issues aside...?
i would NEVER say that about any scoli kid, let alone a teen who has to wear a brace!
if it weren't for the emotional issues, i would expect better cooperation, and the physical
issues of adjusting the brace would be the only "resistance" there was...
the physical aspects of the brace...any irritation, discomfort, can be addressed
a heck of a lot more easily than what is happening inside the child's mind and
soul...
anytime a parent says it is "impossible to talk to her about it" i expect the emotional issues cannot
be put aside!

jess

Pooka1
01-05-2012, 07:28 PM
Jess good point though I doubt mamandcrm was trying to minimize emotional issue rather than draw the discussion for the moment to the physical issue of wearing the brace at night.

And on that issue of physical discomfort, there are plenty of cavalier comments to the effect that a correctly fitted brace can BY DEFINITION be tolerated. Just get it tweaked correctly by the top orthotist and BINGO!... tolerable physically. Well I am no expert but I want to suggest that the best fitted braces in terms of highest hope of efficacy are likely the least comfortable because they achieve the best in-brace correction. It strains credulity to suggest better in-brace corrections are MORE comfortable. Call me crazy, ignorant, etc. etc.

jrnyc
01-05-2012, 07:39 PM
well, it is pretty hard to communicate at all with a kid with whom it is
"impossible to talk with"
any brace is going to be trouble in that situation,
and do braces not feel somewhat uncomfortable if they are to do their
jobs, kinda like getting braces on teeth adjusted every so often?
can a brace jsut plain not hurt or be noticed by the wearer and still
be achieving some change for the patient?

jess

mamandcrm
01-05-2012, 07:50 PM
Oh please, of course I didn't mean ignore the emotional issues--I would appreciate it if you would refrain from jumping all over people who are trying to help. I simply was trying to address the physical side of things which might help ease her into wearing it at night as a first step. I do have a kid who wears a brace, you know.

Pooka1
01-05-2012, 07:57 PM
I do have a kid who wears a brace, you know.

Yes and just to avoid all possible confusion for the original poster, your child has Juvenile IS (JIS), NOT AIS as it appears her child has just from the age posted. The bracing success situation appears to be different for those two conditions.

I think it would be helpful if JIS parents posting advice to new AIS parents about bracing always clearly point out these different cases.

mamandcrm
01-05-2012, 08:11 PM
OK, forget it. You guys make this very hard. For the record, my post does not offer any opinion one way or the other as whether bracing in this case is a good idea, and I mentioned absolutely nothing about my daughter's experience with the brace. I thought the poster asked for help acclimating her daughter to the brace, and I tried to give her some suggestions about the physical side of it. That's it. Bye.

mariaf
01-05-2012, 11:02 PM
mamandcrm,

I think you may be taking personally posts that weren't meant that way - it is sometimes difficult to interpret the written word because you can't hear the tone, but for example, I think Pooka was simply reminding folks how important it is to differentiate AIS from JIS in terms of bracing, which is an excellent point. I'm sure she did not mean that as a personal attack on you or anything like that. I guess sometimes with a forum where folks are posting different thoughts and ideas/opinions, we have to give the benefit of the doubt. Just as you were trying to help with your suggestions (and I think the one about putting the brace on loosely at night and then tightening it after the child is asleep is an excellent one that has worked for others), I'm sure that others were doing the same thing and just making points they felt would be helpful to the original poster's situation.

mariaf
01-05-2012, 11:14 PM
Denise,

I just wanted to say that my heart goes out to you and your daughter. I have a 20 year old daughter (my son is the one with scoliosis, not her) and I remember all too well the teen and pre-teen years (even at 20 they can still be quite emotional from time to time, although much less often, thankfully!). When my daughter was entering high school you'd think it was the end of the world that she still hadn't gotten the braces off her teeth!

I remember when David (my son w/scoliosis) was about to have VBS surgery, he wasn't even 6 at the time and so he couldn't take part in the decision on whether or not to have surgery (one of the goals of which was to rid him of a full time brace for the next 8-10 years). I felt the weight of that decision big time, and my daughter was exactly your daughter's age at the time - she said to me 'Mom, I'd be scared to have surgery but I'd choose it in a heartbeat before I'd wear that thing (meaning the brace) to school'. This is the age where they want so badly to fit in, and to be like everyone else. I just wanted you to know that I understand and truly hope that things get easier for you.

I also think Jess's suggestion that your daughter speak to a counselor or some other person that she can freely vent her feelings to might be very helpful. Certainly couldn't hurt.

Best of luck and please keep us posted.

jrnyc
01-05-2012, 11:32 PM
and i was saying that the emotional cannot be "aside from.." when a child is so resistant...
without a dialogue going, little can be accomplsihed, physically or otherwise...
i realize when a writer is referring to the physical aspects of a treatment...


"oh, please..." ??
how about "get over taking things so personally"

Denise...my heart goes out to you with the decisions you are faced with...

Maria..your PM's are full

jess

leahdragonfly
01-06-2012, 12:17 AM
Hi Denise,

my heart completely goes out to you. Your situation with your daughter is so difficult, and I do not know if there is any easy solution. You definitely got some good suggestions above about ways to make the brace more comfortable. I am curious what your daughter's exact complaint about night-time is, since someone pointed out it is not a self-consciousness issue at that point. It is possible to have a brace that is simply too tight and/or too aggressively corrective (could be in your dd's case from 41 to 13). The amount of physical force necessary to achieve such an aggressive correction may be too painful for her to handle. What does the orthotist have to say about the brace now that multiple adjustments have ben made and it is still painful?

I was braced myself at age 13 with the same brace as your dd. I clearly remember (and I am now 44) how devastating the brace was for me personally. It would be an understatement to say I hated it. I was forced to wear it to junior high, and I was truly and completely mortified by the experience. Nothing anyone could have said would have made it ok, and for me, I would much have preferred to have surgery than wear the brace. My mother was not super sympathetic seeming, and basically took the tough-luck attitude and we rarely discussed the brace or how it made me feel. She tried making me go to a scoliosis support group for other teenage girls in our area, and I despised it and felt like a freak surrounded by freaks. It did not make me feel better about the brace. I feel like my relationship with my mother suffered due to the brace.

My own daughter was diagnosed at age 6 with juvenile scoliosis, for which the most common treatment would be 9-10 years of bracing. I can not even begin to describe how much it tore me up to force my daughter into a brace. I tried very hard to put on a positive face for her, but it was absolutely impossible for me to remove my emotions of my own experience from her situation. Even though I tried to be very strict about the brace, she fought me tooth and nail over it, and cried gallons of tears. She refused to wear it to school (luckily one doctor told her she didn't have to). It was not a good situation, and caused a huge amount of grief and stress in our family. In time (a couple months or so) she adjusted to some degree, but bracing was clearly not going to work out for our family for 9-10 years. We ended up opting for non-fusion surgery (VBS) and she had a very positive experience with it.

My daughter had one brace that she awoke crying every night with her complaining that it was hurting her and crushing her ribs. She would fall asleep ok with it, then awake after several hours sobbing. I do believe it was causing her undue pain. It had a very aggressive correction, too, from 26 to -3 (it was a Providence brace). I tried everything including multiple trips back to the orthotist at Shriner's hospital, and after several months I decided the brace was simply too painful for her and not worth it.

I am sharing all this to let you know that not all families are successful with bracing, and it is ok. It doesn't reflect negatively on you or your daughter if she can not tolerate bracing. I also feel really bad for her if she is braced with a large curve and a high likelihood of ultimately needing surgery. I think many times doctors suspect a child will progress to surgery despite bracing, but they prescribe the brace anyway so the parents feel better. If the brace is so stressful for your daughter and your family, maybe it is not the best treatment option for her. And that is ok. If she needs surgery it is not the end of the world.

Please feel free to send me a private message if you wish to talk more. My heart goes out to you.

jrnyc
01-06-2012, 12:27 AM
parenting is the hardest job, without the added stress of illnesses or conditions that the poor children have to deal with...
so often parents say they wish they could take the problems away, take them on themselves....
but you can't...so that is adding to your stress...to watch your child suffer and not be able to take it away and make
it all better....

Denise, all you can hope for, just in my opinion, is to gather as much information as can be found on the subject of scoli, get
the best possible medical attention for your child, get other opinons from other doctors, hope or pray as much as is humanly possible,
and then make the best decisions for your child that any human being could...no one could ask or expect more of you...

with that said, i hope the experiences on this forum from other parents can give you
some ideas and comfort...

best wishes to you and your daughter...
jess

LindaRacine
01-06-2012, 12:28 AM
Truly great post Gayle.

Pooka1
01-06-2012, 06:53 AM
Truly great post Gayle.

Seconded.

.

.

.

mariaf
01-06-2012, 08:51 AM
Truly great post Gayle.

I agree completely.

Gayle - while some of us can only try to imagine what our kids are going through, you lived it and I'm sure your perspective is of enormous value to Denise and other parents like her. Thanks for sharing.

(Jess - I've cleaned out my inbox.)

leahdragonfly
01-06-2012, 09:09 AM
Thanks everyone for the kind responses to my post. Bracing can be such a hot-button topic since the literature is so controversial. Beyond that though, it is not an easy or benign treatment. I think some kids take to bracing much better than others, and the ones who don't are not bad kids or have bad parents. It just is what it is when a child finds bracing intolerable. Not the end of the world.

There was some bullshit research awhile back that said when a child reacts negatively to bracing it is the fault of the mother (I am absolutely not kidding!). When I had a discussion with one of Leah's FORMER orthopedists about how much she disliked the brace, he told me it was my fault she didn't like her brace (quoting the bullshit study)!!! Needless to say, we never returned to him again. What a jerk. I was beyond furious about that callous comment.

I do think I have a unique perspective as a formerly-braced child who is now a parent of a young child with scoliosis. I post my experiences hoping they can help others. Denise, I hope you will jump back in here and let us know how things are going with your daughter. We are here to listen.

mariaf
01-06-2012, 09:17 AM
There was some bullshit research awhile back that said when a child reacts negatively to bracing it is the fault of the mother (I am absolutely not kidding!). When I had a discussion with one of Leah's FORMER orthopedists about how much she disliked the brace, he told me it was my fault she didn't like her brace (quoting the bullshit study)!!! Needless to say, we never returned to him again. What a jerk. I was beyond furious about that callous comment.

Bullshit indeed!! And I swear I think I would have slapped the doctor for saying that ('jerk' is being kind).

I thought David's former orthopedist was bad - she had a very cavalier attitude towards what kids go through when braced as well. I heard things like 'it's not that bad', 'not the worst thing in the world' and 'I treat lots of kids who wear braces' as if it was no big thing and she couldn't grasp, even when I brought VBS to her attention back in 2003, why I would want something for my child other than to have to spend the next 10 years in a brace.

Someone posted on another thread recently how they went through some sort of training specifically devoted to speaking compassionately to patients (I can't recall their exact position, but it was obviously in the medical field). Maybe they need to make orthos go through that training as well, as we have apparently at least a few who need it badly.

DeniseC
01-06-2012, 10:55 AM
I can't thank you all enough for your posts, especially Gayle's.

It is so heart breaking to watch your child go through this. I can only imagine what she is going through. Gayle, you hit the nail on the head so much with how Sarah is reacting to the brace. She too has stated many times she would much rather have the surgery than to have her life ruined by having to wear the brace. Sarah is a bit hard headed and that makes it hard to be able to tell how much of it is her not wanting to wear the brace and it really hurting her. She complains mostly about her ribs and it stabbing into her. We are not putting it on very tight. We have tried every sleep arrangement we can think of; her bed, an air mattress in the floor, her sleeping in our bed with me (it has a pillow top on it) and last night we gave in and let her sleep on blankets on the floor (hardwoods) because she said that was more comfortable. She works herself up so much fighting the brace that she basically does not go to sleep until she has completely exausted herself. Then she moans through out the night and is tired in the morning.

We have tried to get her to take something to help her sleep, but she is not big on medication and is resisting that. We also know someone who is willing to talk to Sarah, but Sarah refuses to talk to her. The lady is a teacher that Sarah knows and has had the surgery. She never had to wear the brace. I was hoping by now that Sarah would be willing to at least talk with her by now. We have talked about her talking to someone, but she is not willing to at this time. It may be time to make her talk (or at least sit and listen) even if she does not want to. Unfortunately, there is no magic crystal balls for parents to use on helping to raise their children normally. Not to even mention is it best to stay the course of the brace or go surgery or when is the time to force them to talk with someone.

As far as the question if the brace was made correctly, initially the guy who measured and fitted her was puzzled by the brace during one of the fittings. But we brought up the concern after one weekend of her wearing it a lot that when she did not have the brace on it looked as if her curve was a lot worst. We started looking at the brace and by the shape (mostly which arm it went under and the side that was longer on the hip) it seemed to us that it would be pushing her in the direction that her curve was naturally going. We admit we are not experts, so we first went back to where to the guy who fitted her. Based on the x-ray, the brace is correct. The doctor says the brace seems to be a well made fitted brace.

I don't want to ruin my relationship with my daughter. The idea of surgery is scary, but what she is going through right now is not much of a life. Like I said, unfortunately there is no magic crystal ball.

I do have a call into the doctor again.

Pooka1
01-06-2012, 11:15 AM
Wow it really sounds like you have tried and really gone the extra mile.

By the way, I think the present protocol is > 40* is out of bracing range. That is, bracing is not thought to be able to work above that Cobb angle. Now your daughter is essentially right at that threshold so I am surprised the surgeon prescribed it. Was that his idea? Was it only meant to try to slow progression before a likely surgery?

I don't think your daughter is wrong to push back if the surgeon didn't first suggest bracing.

Good luck.

DeniseC
01-06-2012, 11:30 AM
He suggested the brace first and hasn't said if she will or won't eventually have to have surgery even with wearing the brace till she stops growing. He has been honest with her on what surgery would mean now and the future (not sure how much she actually heard or toned out). He doesn't seem to be anti-surgery, but more let's make it be the last option.

As with any parent, the idea of surgery for your child is not one you want to face. And there is always hope that surgery would not ever have to occur or that some improvement would be developed between now and then. Guess that is wishful thinking.

mariaf
01-06-2012, 11:45 AM
You are allowed to have wishful thoughts, Denise :-)

I guess at 41 degrees, your daughter is right at the point where it could go either way in terms of needing surgery. If she was at 50, then that would be a different story.

In any event, while none of us like the prospect of our child facing surgery (believe me, I know), as others have said, it's not the end of the world and most of these kids do amazingly well and return to their normal lives and activities before you know it (Sharon's two daughters would be prime examples of this).

That said, you can't fault the doctor for reserving surgery as a last resort as a general rule. However, in this case it seems that your daughter (and you) are enduring an awful lot of pain (both physical and emotional) and heartache over this (bracing) and it may or may not be worth it. That will, of course, be your call and as Jess said so very well all you can do is "gather as much information as can be found on the subject of scoli, get the best possible medical attention for your child, get other opinons from other doctors, hope or pray as much as is humanly possible, and then make the best decisions for your child that any human being could...no one could ask or expect more of you".

All so very true. So whatever you decide, please don't beat yourself up - you are doing a great job under VERY challenging circumstances.

Hugs,

Pooka1
01-06-2012, 11:47 AM
Well, it isn't completely wishful thinking to hope a 41* curve won't need surgery. There are a few folks on this group who got to the 50* range and hung there, in one case for a few decades. And that was without brace compliance. But I don't know how common that is. And that woman had fusion anyway at 39 for pain, not progression. It seems that simply have a large curve sometimes compromises the rest of the spine over time even with no progression.

Where is your daughter's curve? There are some reports that the lumbar can become structural under an unfused thoracic curve. That would be a huge concern for me if my kid only had a thoracic structural curve to begin with. Essentially, you could go from a selective T fusion to needing most of the spine fused. While a T fusion hardly affects range of motion, a lumber fusion certainly does. You might want to ask your surgeon about the likelihood of this. Ask him about "collapsing spines." I have posted a few blogs posts from a surgeon about this situation. He refers to fusion in these situations as "a stitch in time saves nine."

Actually you should never take anything we lay folks say as correct for your daughter. Only your surgeon knows the answer to what is correct for her. We are just suggesting things for you to ask him if you so desire. Knowing what to ask is always a huge hole for most parents.