Our 7 yrs old daughter has scoliosis, looking ofr others in the same situation

[mommycat]

Hi
I am new here and our daughter was just diagnosed with scoliosis this past March, from x-rays. We got into a scoliosis speacialist in Edmonton Alberta Canada and her doctor is Dr.Hedden.
He wanted her in a Boston brace, due to her young age and double curves. Her upper right curve was 28 degrees and her lower left one was 19 degrees.
He said he considers anything in young children espeacially, over 25 degrees should be braced.
He is not very partial to the wait and watch approach and we as her parents tend to agree with this.
So this past June 9th she got her new Boston brace, which she is going to have to wear 22-23 hrs a day till she stops growing. If I start to think ahead long term it becomes very daunting and scary.
So far its not her favorite thing but seems to be managaing. We are up to 13 hrs in it however this is with her sleeping threw the night in it. She seems to do way better at sleeping in it than wearing it while awake. It seems to be more bother some and uncomfortable to her in the day hrs.
I really do feel for her but I can only stand by and watch and be as supportive and loving as possible. She is not in any way embarrassed by it so far. She has even taken it to her grade 2 class for show and tell and has told her class about her scoliosis and that next yr she has to wear it to school. I truly hope she feels the same way when this time comes.
Her dad and I try to keep it all positive and keep our worries and such to ourselves.
She was quite excited to get to pick a leopard skin patten for her brace, which she calls "Cleo"
she loves going to see the speacialists and seems to be for the most part happy.
Though she has a red mark on one of her pressure points which is a bit tender and bothersome during the day to her. We have just recently been able to adjust the bottom strap of the brace all the way but not quite there on the upper one which squeezes her rig cage area. We were told to take it slow and follow the schedual of wearing it to wein her slowly into it.
I cannot see the day she will actually be comfortable and not ask to take it off after a couple hrs wear in the day. Breaks my heart but onward we must go.
By the way my husband also had scoliosis as a 12 yrs old, so our daughter inherited her scoliosis. He actually ended up getting his back fused at 13 yrs. So fingers crossed all goes well for her.
I was wondering if there wereany other 7 yr olds with scoliosis out there that my daughter could maybe relate with.
Sorry this was soooo long.

[mamandcrm]

Hi Mommycat, my daughter was diagnosed at age 6, a few months before her 7th birthday. That was 2 years ago (almost exactly). She is finishing 2d grade this year, so is in the same general age group as your daughter. We have had a very good experience and outcome so far with bracing. My daughter does not wear a Boston brace, she wears a Rigo-Cheneau brace. She wore it full time for 15 months and now wears it part-time. We are big fans of the Rigo-Cheneau and are very happy with the results she has gotten with it. I have a thread in juvenile, entitled "Rigo-Cheneau update for G" or something similar. That said, though the brace my daughter wears is different, much of the day to day experience of full-time brace wear is the same and I would be happy to answer any questions you or your daughter have regarding bracing in general, as well as any other questions you may have. The first few weeks are the hardest and it sounds like your daughter is adapting well.

Chris

[mommycat]

Thanks so much.
I am not sure we have that particular brace in Canada or rather if our doctor deals with it.
I know they have just recently got the Providence brace only worn at night, but have yet to get any data of their own on it. However its good to know it could be an option for her later on.
She has been in it for 11 days now up to 13 hrs, though this is accomplished at night mostly.
Did your daughter have any tender or sore areas that were red?
My daughter is quite slender and really has no extra padding of her own, just skin and bone. One of her pressure points has a pink area that will not go away. We took her and her brace into the orthotist and they shaved down some of the padding in that general area and did not seem too concerned over it. I suppose its going to happen till her body gets used to the brace and her skin toughens up.Given the areas has been irrated it may take a bit to feel better.
It just makes me sad and frustrated that she says it hurts and needs it off to get a little rub.(which we do)
Did your daughter experience this? Does it really get better?
Thanks for your advice by the way.

[mommycat]

I saw your daughters x-rays, amazing. I never realized their brace time could change as their backs possibly straightened out.
What is the difference with a cheneau brace vs a boston?, if you do not mind me asking.

[mamandcrm]

Hi Mommycat,

I'll try to answer some of your questions here, then send you a PM about the rest. It's not unusual for your daughter to have sore spots and rubs--she's just getting started with the brace and it may take a little time for her body to get used to it. Some people recommend using rubbing alcohol on sore spots as a means to toughen the skin. We never had to do that as any sore spots my daughter had were always well managed with adjustment to the brace. Taking the brace back to the orthotist was a good idea. Hopefully they will help you work out any kinks in it. My daughter also swears by the undershirts made specifically for brace wear. She will wear nothing else under her brace.

As far as your daughter finding it difficult to wear the brace long hours during the day-time, it is early days yet. That was not a problem for us, partly because G already was used to part-time brace wear, and partly because she did not find the RC uncomfortable. It sounds like your daughter has a good attitude, and your support and calmness are helping her a lot. The Boston brace fits differently than the RC, and it is my understanding that it squeezes the torso/rib cage more, making it uncomfortable for some children but I think most adapt over time.

My experience/knowledge of juveniles getting significant correction with brace wear is limited to those wearing the type of brace my daughter does. I am not aware that it is something that can be expected with a Boston brace. The field of juvenile scoliosis is very underresearched in my opinion, and my personal belief is that more may be possible for juveniles than for adolescents if you can find the right approach for your child.

I'll send you a PM with a little more info about the RC, where it is available in Canada, etc. Feel free to post any more questions. There are lots of people here who can help with day-to-day brace issues.

[mommycat]

Thanks so much, yes my daughter too has a few of the BostonT-shirts made for her brace. Very expensive though.
OUr orthitist also gave us a box of 100% cotton stockinette tubing ( like the stuff they put on her when she got the cast for the mold for her brace) he said its more of a one time use thing, just cut off what you need. Its another option to use underneath and a little thinner and cooler. But we are waiting for her to become more used to wearing her brace before we use that.
Yes her brace is quite tight around the torso and rib cage area. At first she said it was hard to breath, but I think she is getting better with that part.
Thanks again and I will look at what you PM me as well.

[michael1960]

mommycat

My daughter is 8 and has been wearing the Boston brace since mid-March. She is also wearing a SpineCor brace. She wears the SpineCor to school and for sports (and usually when she goes out) and she wears the Boston brace at home and at night. She has the same redness on the pressure points.

Regarding curve reduction I have read/chatted with others who have had curve reduction from the mid 30s to the low teens wearing different braces: SpineCor, Boston, and Rigo-Cheneau. These were all with children around 7-8 years old.

Like mamandcrm, I would choose the RC brace as my first choice for a brace to reduce the curve. For various reasons we are in a SpineCor and Boston brace, but still very much considering the RC brace.

My daughter was 36 deg (T4-T12) last October (2009) and today is about 15 deg (T4-T12). Her worse curve is no longer T4-T12, but is now T5-T10, and it is about 22 deg. She has been wearing the SpineCor brace since last October (2009) and the Boston brace since March (2010).

We have also done some physical therapy/exercises with a chiropractor who specializes in scoliosis treatment. These are two week treatments that we have done a couple times (doing the 2nd one right now).

In addition, while we are working on the curve reduction with bracing and physical therapy we are also having VBS consultations. While curve reduction is great, the question is whether any brace can hold the curve during the growth spurt years (11-13).

Regarding brace wearing I would recommend that you try to get maximum in-brace correction. Syd was out of brace at 30 deg and in brace with SpineCor at about 18 deg and in brace with Boston about 13 deg. With her latest in brace measurement she is about 9-10 deg. I would like to see her closer to 0 deg or negative correction with the brace.

Please let me know if you have any other questions regarding the Boston brace or bracing in general.

Mike

[NewHorizon]

Hi mommycat,

I'm new here now and yours was one of the first posts I saw -- we're in a similar situation and I'm anxious to hear how your daughter has adjusted since you first started the thread in June.

My 8 1/2 yo was just prescribed a Boston brace yesterday. She is 34 deg from T5 to T12. We did the watch and wait for about a year or so, when it was first discovered at 17 deg. Dr. Ward recommended watch and wait until 25 deg, which is where we were in June 2010 at her last appointment. She'd had a pretty good growth spurt since then, and I suspected we were looking at a brace when we went to see him yesterday.

I don't think she's truly grasped the magnitude of the fact that she may have to wear the brace for YEARS, and I'm going to try and avoid these specifics. My approach is going to be that we wear it until we go back to see Dr. Ward and see how she's doing--day by day, essentially.

So much to learn and absorb, as I simultaneously try not to let this new situation dominate our lives. I want her to be Ainsley, not "the girl with the brace." I'm glad to have found this community for info. and support.

I wasn't aware of the SpineCor or Rigo-Cheneau, but will research and ask the doctor.

Kara

[Resilience]

Kara,

I feel for you and where you are right now. I cried every day and still do some days.

My daughter is just a few months into her treatment with the Boston Brace. You can see the details on the "sweet 8 yr old link" under Juvenile.

I just yesterday posted the question about how much to tell my daughter and when and received many helpful insights from other parents and how they handled this difficult topic with their children. I'm still processing it all. Right now we are at the same place, I told her the same thing as you did, we'll see what her doctor says at the next visit. It was all I could possibly get out, then I went and cried to my husband.

I completely understand the feeling, as a mom, not to have your daughter be "the girl with the brace." We have not found that to be the case for her. We did address her class before she started to wear the brace to school, showed them her x rays and answered their questions. My daughter made it clear that she wanted me to mention that she wanted to be treated "just the same" and she has been.

I have often overheard other children saying to her when the give her a hug etc, "oh, I forgot you were wearing your brace. I can't even tell." Of course, I'm sure that she doesn't forget but the point being that it is not on the top of other's minds.

I have found this forum to be very supportive and insightful and I am sure you will too.

Feel free to contact me any time if I can be of help and hang in there. I think day by day survival and being there for your daughter is where you need to be right now.

[michael1960]

Hi Kara

My daughter was very similar to your daughter. She was about 36 deg at 8 yrs. old (T4-T12) back Oct 2009. Today, about 15 months later, she is at 15 deg (1-18-2011).

She has been wearing the SpineCor brace for school and sports and she wears the Boston brace when she is at home and at night. For the most part she wears the Boston brace at night.

I have read several cases of children reducing a 30-35 deg curve down to 10-15 deg, and I have read it being done with different braces (Cheneau, Boston, and SpineCor).

It may or may not be brace dependent, but more importantly, it may be more dependent on in-brace correction and the amount of time wearing the brace. My daughter is in a brace 23 hours per day. But she does not mind wearing the SpineCor brace. She does not like wearing the Boston brace, but she wears it (normally 10PM - 8AM).

We also do a CLEAR chiropractic treatment with a chiropractor in NYC who also includes bracing in his treatment.

When Syd got her Boston brace she was 30 deg out of brace, and 13 deg in brace. Over 50% correction in the brace. I have recently read of a girl getting an in-brace from 27 deg out-of-brace to 3 deg in-brace. That is an incredible in-brace correction. The in-brace correction and the orthotist who does the fitting, is very important for bracing.

By the way, if I had the money right now (my insurance will probably not cover it), and with all my research on braces, I would probably choose the Cheneau brace, but I would probably still have Syd wear the SpineCor during the day at school and for playing sports.

Please let me know if you have any questions.

Thanks
Mike

[mommycat]

Hi Kara
Wow its been awhile since I have been on here.
Well I must say first off my daughter now 8 yrs old is quite the trooper.
After the first couple mths of getting used to the brace and all the sore spots we actually ended up getting another Boston brace made since the first one was not fit properly.
Her new one is better fit and she has no sore red spots now.
Aside from the fact she had to now get used to another brace she did surprisingly well.
She never complains and plays like crazy in school with her friends. When she started grade 3 this year, their teacher had them make a "Me" box and they were to put certain things about themselves in their box for their new and old classmates.
My daughter included her xrays and pictures of her brace and told them all about her Scoliosis. Her teacher really liked that she did this.
Mind you she is still rather shy to let new people know about it and does not really like too many questions but all in all she seems to have made good friend with "Peaches" her new braces name.
Its been about 8 mths and we had our first out of brace xray since her first visit with he speacialist. At that time her big curve was actually 28 degrees I think I said 26 at first unfortunalty it has gone up to 35 degrees. In brace she is at 18 degrees which is approx. 50% from her out of brace xray so the doctor likes that.
Its not so great that she got worse out however, but she has been actually growing like a weed so who knows. We for now just keep wearing the brace for 22 hrs a day and go for another set of xrays in 6 mths.
How is your daughter doing now? Our daughter actually asked to have her brace back on when we were going for the out of brace xray since she had been out of her brace for about 16 hrs. Doctor said this is normal since their muscles get so used to being braced and when they are out of it it can actually cause discomfort.
Let me know how things go for you and I can keep you posted about my daughter. I just hope we can avoid surgery and if not at least hold it off till she is older.

[bmeyer17]

Our son is 7 years old diagnosed at 5 with 3 curve scoliosis middle curve being 35 degrees, 2 years later he is at 45 and they want to operate. he has been in 2 boston brace and a milwalkee, now I have done some research and he is in a Rigo Channeau with a great correction in brace, 1 red spot though, hopeing it goes away, its been 2 weeks. He is also learning Schroth therapy, we go to Boston for that. We are trying to derotate the spine and see correction so we don t have to operate. Check into Schroth Therapy! We just started it so hopefully we will have some success stories in a few months. He is braced 23 hours a day.
Becky