My sweet 8 yr old daughter is about to get her first brace

[Resilience]

I am heartbroken and wonder how other moms have survived this?

My daughter inherited Scoliosis from me. It is disrupting her life at a much younger age than mine did. Clearly she has a long road ahead of her, we both do. She currently has a two 27 degree curves in an S shape. She is very flexible and athletic and has been prescribed a TLSO to be worn 18 hours a day.

My scoliosis was diagnosed when I was 13 and I wore a Milwaukee brace for 3 years full time and have horrible memories of it.

I am usually a strong person but currently I feel like I am living a horrible nightmare. I'd appreciate any advice from parents who have "been there."

Thanks,
Resilience

[jrnyc]

hi resilience
welcome to the forum...there are many caring, kind people here, with stories & experiences to share, recommendations based on their own difficulties with this condition and related problems...and shoulders to lean on...people of all ages and walks of life...

i sent you a private message...

best of luck...
jess

[mariaf]

Hi Resilience,

I have 'been there' and my heart goes out to you. You will see from my signature that my son was braced for a few years when he was very young and that he had VBS (stapling) in 2004. Like your daughter, he is very athletic (plays basketball and baseball, his true passion).

The good news is that there are new breakthroughs in scoliosis treatment all the time -- even juvenile cases, which for a long time did not get the attention that adolescent cases did.

Hang in there. No matter how strong we are, it's never easy to see our babies go through something like this.

Feel free to e-mail me any time.

Hugs,

[Resilience]

Thank you. I will.

[jillw]

Resilience,

Your "name" says it all - that is how you all will get through this. I empathize with your heartbreak - I was there 3 years ago (see my signature below). I noticed the time you posted this message which makes me guess that you are having trouble sleeping because of what is happening to your daughter. (I never pulled an "all nighter" while studying in college...it wasn't until my daughter was diagnosed with scoliosis that i spent the entire night awake trying to find all the information on it that I could; i couldn't sleep anyway so i thought i'd be productive). For me it was like the 7 stages of grief (shock and denial/pain & guilt/anger, sorrow - mostly sorrow). I can't say that I'm totally at acceptance, but things are definitely way way better!

How much does your daughter know so far? My daughter was almost 7 when she was diagnosed and I was heartbroken because i knew she had such a long road ahead of her but also because i couldn't even begin to imagine how i was going to convey the whole concept of bracing to her.

I broke it to her in bits and pieces. She knew she'd be wearing a brace...a few months later she asked for how long. I told her that the doctors would tell us that (but that we were next going to the doctor in 5 months) , then as she asked more sophisticated questions she got more detailed answers (eventually i told her she'd be wearing it as long as she would be growing so it would be for a while and as she got older she came to the conclusion that it will probably be at least until she is 15 or so...but it took her a couple years to get there and by then she had adjusted to life in the brace).

I had a friend who wore a Milwaukee brace like you did. The brace was awful - like a torture device (albeit a needed device). I believe the TLSOs are so much better than what you had to wear so hopefullyit won't be as hard for your daughter. Also, since she "only" has to wear it 18 hours (I know, 18 hours is a lot, but its better than 23 hours) it gives her a good 6 hours for her activities. The downside is that it doesn't give her enough out of brace time for both school and whatever physical activities she does after so she'd probably have to wear it to school to free out of brace time for whatever athletic activities she is in. You will quickly find out the best way to manage that out of brace time.

I know every child is different, but the cosmetic aspect of wearing a brace didn't bother my daughter at first (it is starting to now that she is getting older and it will only get worse, but when she was 8 she still didn't care). Is your daughter in 3rd grade? I think the kids at school are still very accepting then. With my daughter I came in to the school with her when she first got the brace and the teacher arranged for a Q&A session with her classmates. That way EVERYONE knew what it was for, that she was still the same girl, that it wasn't contagious, etc. The kids were curious and enthusiastic and I felt so relieved after that. (I realize we'll have a new set of challenges when she hits middle school where there will be a large new group of children who don't know about my daughter's scoliosis-but one day at a time, right?)

Finally, as Maria stated, there are beginning to be more options for scoliosis treatment. If a TLSO doesn't work for your daughter (physically or emotionally) there may be other options - it's good to know there are options other than 22 hours in a milwaukee brace. There's lots of info on these boards and elsewhere. Good Luck! Let us know how its all going.

[Resilience]

Jill,

Thanks for your support and words of encouragement. I am trying to be resilient, although this is one of the most difficult challenges I have ever had. That said, I believe that life is 10% what happens to you and 90% how you handle it. Our goal as a family is for this to not define who she is, just be part of it, and for her to reach skeletal maturity with her confidence intact.

How much does my daughter know? She knows that we'll be picking up her brace sometime this week, then the follow up apts before Thanksgiving, the wean in period, and then the plan for routine follow ups every 3 months which will guide the route from there. I was honest but didn't feel the need to discuss all of the if this then that options in detail. We don't know, and she would worry about the unknown.

Thanks, also for your insight in addressing my daughter's class. I'll do that on Wednesday and I'm nervous about it. (I want to be strong but fear that I will cry.) It's good to hear that you felt better after addressing your child's class.

Thanks so much for the support. I truly appreciate it.

[mamandcrm]

G also did a "show and tell" when she got her full time brace in 1st grade. I did not go with her but I had a lot of trust in her teacher. It was very uneventful. The kids asked some questions which G described as "some were stupid and some were fine". None made her feel self-conscious. It was her 5 minutes of fame, and then it was done. No one ever mentioned her brace again. At this age, kids don't focus on the cosmetics.

[Resilience]

My daughter and i shared her XRays with her class yesterday and it went really well. I think it was helpful for the kids to see the curves on the films since to look at my daughter, she looks balanced and perfect! They had great questions and we talked about their experiences with braces and XRays.

I brought home the point that my daughter wants to be treated "just the same" once she starts to wear the brace to school. The teacher and class commented that they plan to treat her with respect. My daughter and I both feel a relief after addressing her class.

More tough times to come, but today we feel good!

[jillw]

Good! Glad it went well. Was she wearing the brace or do you still need to pick it up? Good luck!!!

[Resilience]

We pick the brace up on Monday afternoon and we have her first in brace X-Ray the day before Thanksgiving.

[Resilience]

So we've had the brace since Monday and despite a few tears when the orthotist first put it on her, she's been amazing! We are weaning in by 2 hours per day so today we are up to 8 hours and she wore it to school for the first time today: her choice, I was thinking the first day to wear it to school would be tomorrow, but I followed her lead.

[michael1960]

Hi Resilience

Congratulations on your daughter wearing it to school. You must be very proud of her. I know in the beginning with my daughter we had to have a lot of discussions around why it is so important to wear the brace.

Just a few thoughts/comments based on my daughter starting with our first brace around 8yrs old.

1. Do you know the in-brace correction? Have you had a chance to get that measurement yet? The reason I mention it is that out of brace correction is very dependent on in-brace correction. I have read that it is important to get at least 40% or more to get any curve reduction (out of brace). I will need to find that % again. But it is very important. My daughter went from 30 degrees out of brace to about 20 degrees when she was first fitted. They felt that was not good enough so they made some adjustments and got it down to about 13 deg. Today she is closer to about 5 deg. It is not comfortable, but she has grown to deal with it. My daughter wears two different braces so the hard brace she only wears about 8-10 hours per day.

2. Are you meeting with a VBS doctor? I apologize if you have mentioned it already. Your daughter is in the VBS range. If she was to reach 35 deg she would move out of the VBS range into the VBS with hybrid rod. It is so important to manage it and keep it below 30-35 degrees. Initially we missed the opportunity for VBS only (staples only).

My daughter's curve progressed from 23 to 36 in 3 months when she was not wearing a brace and it made her a VBS with hybrid rod candidate because she was over 35 degrees. Fortunately you have your daughter in a brace much sooner than my daughter.

I with both of you the best. Good luck.

Mike

[Resilience]

Mike,

Thanks so much for sharing your experience. Greatly appreciated.

My daughter just had her follow up yesterday. The orthotist added more foam inside the TLSO and tightened the brace so tight that my daughter was very uncomfortable. They then took the in brace X Rays which look virtually straight and Dr. Newton was very pleased. My husband took her to the appointment this time and said they didn't give an in brace curve measurement, just that the in brace correction was great. Honestly, I expected great in brace correction because my daughter is very limber and I am happy to see the in brace X Ray, but she is quite uncomfortable now with the brace modifications. She's slept through the night but today was the first day she was not wanting to wear it and when we took it off she has redness where the extra foam was added inside the brace. I'll see how it goes over the Thanksgiving weekend and we may have to follow up with the orthotist next week.

I am curious about the in brace correction measurement too and will get the radiologist's report next week after it's dictated etc. I am compiling a file to send to Shriner's in Philadelphia for review of her case re VBS. If they indicate that she may be a candidate for VBS we could make a trip to PA sometime in the future.

After her discomfort in the brace today I am more interested in your style of management with SpineCor during the day and TLSO at night. Nobody in San Diego prescribes SpineCor, we'd have to go to LA and most likely to a chiropractor. I'll have to research it further.

Again, thanks so much for sharing your experience and advice!

[michael1960]

Hi Resilience

I am happy to hear about the in-brace correction. In brace correction is very important to get the curve to reduce over time. The greater the in-brace correction the greater the potential reduction (but no guarantees).

The brace on my daughter is very tight. She has been in it for 8 months so she is very used to it now. In the beginning, early months, she would toss and turn all night, sometimes wake up crying. I used to sleep with her so that I could be there for her, and sometimes loosen the brace if necessary. But in the morning she would never remember it. Over time she became better and now sleeps all night. Every morning I would inspect it and look for red spots. They can get bad, especially if wearing the brace 23 hours per day. Needs to be monitored very closely. The brace itself is uncomfortable, but the red sores can really hurt. I always talked to my daughter about "uncomfortable" vs "pain". I expect her to endure some level of being uncomfortable. But she should not have to endure pain.

And some places where the brace hurt her, like in the chest area, we added a little bit of foam, and it helps her. It does not impact the brace, but takes away some of the pain.

The advantage of the SpineCor is that my daughter wears it during the day, so any redness that develops overnight is gone by the time she goes to bed again and puts on the hard brace. So it has never been an issue. My daughter loves the SpineCor, in comparison to the Boston brace. I would prefer that she wear the Boston brace more. Right now she is doing it only at night, so about 8-10 hours at most. The rest of the time she is in the SpineCor brace. I look at her back almost daily when she removes her brace. I like to look at the spine to see how straight it is. Surprisingly, it looks straighter when she takes off the SpineCor, not sure why. But I am investigating that. But I do know that she gets much more correction in the Boston brace.

I like the SpineCor for these reasons:

1. She gets good correction (but not as good as the Boston brace)

2. She can wear it to school, play sports, after school with friends, etc.

3. While it can be a bit inconvenient going to the bathroom, my daughter just removes it completely and puts it back on all by herself. It has never been an issue.

4. And there is no issue or problems with people at school saying anything to her about wearing a brace. Probably not a big deal at 8 or 9, but when they get older it could be an issue.

5. I am a supporter of the theory that the SpineCor allows the spine to be straighter AND it allows the muscles to continue to develop. Also, it allows the rest of the body to continue to grow normally. Need to be careful with a hard brace, especially very tight, impacting the growth of other parts of the body, like the development of the ribs.

I like the combination, not only for the results, but for my daughter to have no issues with wearing the brace. Yes, uncomfortable at night, but other than that, she lives a very normal life. She puts the SpineCor brace on in the morning as if it is just part of getting dressed: under clothes, SpineCor brace, outer clothes. Just one more layer to put on. We had to buy some new clothes to make sure the straps were hidden by her neck.

She started off to school one day, crying, and I asked her why, and she said people could see the strap. So we grabbed another shirt that hid it, and the tears were gone.

But, I do believe she should be in the Boston brace (hard brace) more. I would prefer that she was in it from about 5 or 6 PM to about 8 AM. So, more hard brace.

It is great news you are getting very good correction. You want over 50% at least, and more if you can get it. At our last x-ray (June 2010) she was probably about 18-20 deg out of brace (down from 36 deg October 2009), and 3-5 deg in the brace (when it is very tight). I assume she is closer to 10-12 in the SpineCor brace.

I hope this is helpful. There are almost no studies on the effectiveness of any type of bracing for juveniles (6-9) and there is absolutely no studies for a juvenile wearing two braces. I would assume every doctor, chiropractor, and orthotist will tell you that it will not work. But, The hard brace providers will tell you why SpineCor does not work, and the SpineCor providers will tell you why a hard brace does not work.

Please feel free to ask any questions. Your daughter is probably safest in a hard brace, at least with respect to stopping and reversing curve progression. However, we have to allow them to enjoy school, time with their friends, and play sports. The hard brace can sometimes make this a challenge.

One very good point is that my daughter is in a brace no less than 23 hours per day, with no complaints.

Good luck. Ping me anytime. If you want to chat through email or on the phone just send me a private PM. I know what you are going through. We are about one year ahead of you.

Mike

[leahdragonfly]

Hi there,

I have been following your daughter's story but haven't had a chance to post yet (I am recovering from recent scoli surgery myself). Welcome to the group, and I am so sorry to hear of your daughter's diagnosis. I think is somehow harder for us who had scoli during childhood to see it crop up in our beautiful children. It was certainly a huge heartbreak for me, and I cried literally every day for a month when my daughter was diagnosed at 6 y/o.

It sounds like you are true to your name, and so is your daughter! She is doing so well with early bracing, which is great, although not always easy.

We chose to fly to Philadelphia (from Oregon) for a consult with Dr Betz, and it was well worth the trip. If you are interested in this option, I would suggest sending an e-mail to Janet Cerrone, the spine program PA. She is extremely knowledgeable as well as genuinely nice, and usually responds within a few days. Her e-mail is janetcerrone@comcast.net. You can tell her about your daughter and tell her you'd like to come for a consult, and she can help facilitate the process.

We were interested in VBS but my daughter was too young at age 6, so we braced her. When she was 8 the time was right for VBS, but at that point Shriners had a long wait list in Philly, so we were able to get transferred to Shriners St Louis. My daughter had VBS in May with Dr Luhmann, who is absolutely wonderful. He has done over 40 VBS surgeries which is probably the largest number outside of Philly. My daughter did great, and her curve is now in the mid-teens (down from 30) at 6 months post-op. She is thrilled to be brace-free.

I don't know if you've had a chance to check it out, but there is a website www.vertebralstapling.com which contains lots of VBS info, as well as a discussion forum you can join to learn more. There are a lot of parents of children there who have had VBS as well as many who are considering it.

Good luck, and please let us know how things are going. Your daughter should adapt to the new tightness of brace over the next few weeks, but it's never a bad idea to check with the orthotist to verify the fit.