Six months post brace

A few weeks ago Dancer Girl had a follow up appointment at the Schroth clinic.

She was a little nervous.

Not because of the clinic itself, but because she hadn't been particularly faithful in sticking to the plan they had laid out for her back program. She was very nervous that they would see some progression of the curve.

The last thing she wanted to hear was that she might need to go back into a brace.

It turns out the appointment was very positive.

There was no progression.

                     It was holding steady.

                                               Whew!

It also helped that all the staff there are so incredibly supportive.

The therapist had her walk through all the specific exercises again to make sure she was remembering them correctly. Together they chose the ones that seemed to work best and that Dancer Girl was most likely to commit to doing regularly. We worked out a plan to ease back into a regular routine and went away happy.

It appears Dancer Girl really has stopped growing. The exercises should help support her back, and if done correctly and routinely, could even result in some correction.

While this program is expensive we would recommend that it is considered as part of a program for scoliosis as you search for the best option for your back or your child's back. We were impressed by the research behind it, the staff are supportive at the clinic we used, the choice of strategies were clearly specific to Dancer Girl's curves, and it is entirely do-able once you are set up and in your routine.

It is a program for life. Hopefully one free of serious back pain, free of curve progression, with no more bracing required!

Life post-brace

Brace-free days...

At our last appointment with the back doctor Dancer Girl had another x-ray. She was a bit disappointed to find there has been some progression since coming out of the brace a couple of months prior. However, it was only 1 or 2 degrees and the doctor was not concerned. He felt it was due to settling that occurred once the back was free of the restrictions of the brace rather than any real progression of the curve.

He basically said she is done with seeing him regularly. We thanked him and told him that we hoped to never see him again (nothing personal - he's a great guy)! He totally understood the sentiment.  :)

Dancer Girl still has to deal with some back pain, although it is much less frequent and less painful than before bracing. Yay!

She also has daily Schroth exercises to do. These are specific to her back curves and were learned from a specialist (see previous posts for more information). She can select from a variety of ones but has to do some every day.

During the summer, when our schedule is less structured, this has proven more difficult than we expected. You would think with more free time there'd be more opportunity for these things but because every day is different it's hard to remember to fit them in.

Once the fall schedule kicks in we can get better at making sure they are fit into our regular routine. The goal is to keep progression from happening and to stabilize the back.

She is also finding that some of the clothes she bought to fit over her brace still work fine without the brace. Some of it is too big of course, especially the pants and shorts, but at least we can still use some of it. Nice for the budget!

We are so thankful to everyone who helped Dancer Girl through her brace-wearing days... her pediatrician, back doctor, physical therapists, Schroth therapists, other bloggers' helpful information and advice, family members, and friends.

What seemed at the time like a long road has had this chapter come to an end. We are hopeful that we have come to a place where her scoliosis can be managed well and not pose continued issues for her.

And she can still dance!!

Diving In

Last week Dancer Girl began her intensive therapy sessions for her back using Schroth techniques at Scoliosis 3DC. We met for the initial 2-hour session where we were a bit overwhelmed with all the information, but in a good way. It is clear they take each person case by case to figure out the best exercises, stretches, breathing techniques, and ADL adjustments. This is not a one size fits all program.

They took pictures of everything and we will end up with a binder full of personalized instructions at the end of the program. They will also take video & send that home with us upon completion of the sessions.

The therapist was wonderful - informative, friendly, funny, and thorough. She also happens to be a dancer! This was nice for Dancer Girl, plus the therapist was able to use dance terminology for various body movements and positions as a way to help her learn the best ways for her to sit, stand, move, etc.

It turns out that she has been doing most activities of daily living (ADLs) wrong. Sigh. The way that is most comfortable for her body is typically not what is best for her back. The new ADL techniques will help counteract the curve rather than play into it.

The picture isn't Dancer Girl but it is similar to her curve issues and shows what we get - photos with instructions for how to sit, stand, lie down, reach, carry, etc. You can see in the left picture that the girl is leaning with/into her curve as she sits creating an increased lumbar concavity.  A simple correction for picture two shows how she has gone against the curve and reduced the lumbar concavity as a result.

We will go back three times a week, two hours at a time, for the next three weeks. I was so proud of how Dancer Girl took everything in, paid attention, demonstrated that she was learning and listening, and didn't get overwhelmed at having to adjust nearly everything she is doing in her daily routines. It has been an amazingly positive experience so far and we are quite certain that we will come away with a variety of useful strategies to help Dancer Girl keep her back curves from getting worse.

Sometimes you just have to dance

Spring has finally arrived in New England after a colder than usual winter.

Well, today it is cold, wet, and windy (sigh) but for the past week it has really been quite nice.

Yesterday Dancer Girl and her sister just had to take the opportunity to dance outside.

We had an impromptu photo shoot of sorts and it was such fun to see them enjoying themselves.

Big Brother wasn't into the dancing but he rode his bike & shot some hoops while the girls leapt and twirled around him. He's such a good sport with all the dancing that goes on in the house.

For part of the time Dancer Girl even put on her pointe shoes - the picture shows why it was good that she chose the old ones to wear outside!! Yikes!

So this isn't really a scoliosis related post so much, but dancing is such a big part of life here that we decided to post it as a celebration of the joys we can find in life, even if it's just dancing on a warm, sunny day.

Schroth introduction

We had our first meeting with the doctor who runs the clinic closest to us (Dr. Marc Moramarco at Scoliosis 3DC).  People come from all over the world to get treated here so we are fortunate to live very close - a 15 minute drive in fact!

Everyone was incredibly friendly, making every effort to be sure Dancer Girl wasn't nervous. In fact, they assured her so often not be nervous that she began to think there must be something to be nervous about!! (There wasn't...)

This was the initial assessment.  He took a good look at her most recent x-ray and then examined her back, taking photos so he and the other therapists in the clinic can be sure to be on the same page if we were to continue with treatment.

We learned so much in just one visit!

We learned more about her specific curve than we had before - in fact, she has four curves!  The main one is at 28 degrees and is the one we knew about.  The others are much smaller and are essentially compensatory as her body tries to have her stand straight.  (He said having 4 curves is better than 3 because that last small curve at the top is what makes her look like she is standing up straight, making the scoliosis essentially invisible to the casual observer).

He showed us specifics about her curves and how they impact her posture, talking about each one individually.  He showed us how one small movement could make her back shift more into place right before our eyes.

Basically the program is designed to give you techniques for stabilization and activities of daily living to put less strain on the curves. They provide you with individualized techniques for your specific curves to help strengthen muscles and improve lung capacity which is likely impacted by the scoliosis.

He said that a person that goes into adulthood with less than a 30 degree curve is less likely to have it worsen with age.  Over 30 and it is more likely to progress.  Dancer Girl, at 28 degrees, is right on the edge of that magic number.

This program targets the specifics of each individual person's case with an intensive plan.

This program can and does get correction, but it is not guaranteed.

This program is generally not covered by insurance.

This program is expensive because it is intense and specialized.

The question then was whether or not to do it - Dancer Girl needs to be fully committed for it to work and it is a financial investment.

In the end, she was quite impressed by what we learned during our assessment visit and we have decided to go ahead and give it a try.  A new brace is also expensive, and while this costs more than a brace, if it means she can stay free of a brace from here on out then she is all for it!

We have scheduled her intensive sessions beginning in May - three weeks, 3x a week, 2 hours each time - and will let you know how it goes!

Trying something new

Many people have offered welcome, and sometimes unwelcome, advice and suggestions about scoliosis over the course of our experience with it. Some are based on real life experiences, others based on hearsay, or "a friend of a friend...". It has reminded me of when I was pregnant - everyone had an opinion or story to share!

                Some were helpful, others... not so much!

Over the past few months a number of people have asked us if we had ever heard of a specific method for treating scoliosis. It seems to hit on an area we were curious about, and is called the Schroth Method.

What we like about it, and what has prompted us to explore it as an option in addition to the bracing strategy (not instead of), is that it purports to target the specific muscles and curves of each patient with individualized stretches & exercises, rather than just the general core strengthening exercises we were getting from the PT.

Dancer Girl already has a strong core - she's a dancer after all! What seemed to be missing in the PT program was exercises directly related to her specific curves. It just seemed to make sense to us that it would help to be more specific, but we weren't sure where to look.

So when this one came up a few times in short succession we looked it up and contacted her doctor. It turns out there is a center very close to us! An initial interview is where we will begin and we figured it can't hurt to at least find out more about the program. Her back doctor is supportive, although was quick to say they can't guarantee correction.

I don't think we are looking for correction so much as a program that will help stabilize her back and give her the tools to manage the curve she has as she goes through life. Correction of any amount would certainly be a wonderful bonus, but we know it may not happen.

I just got off the phone with the doctor who runs the clinic and he was very helpful, friendly, and informative while also being very low-pressure. He just gives us the information and lets us make the decision about whether or not to move forward. He also made sure to mention that Dancer Girl is going to need to be motivated for it to work - having supportive parents is nice, but she is the one that needs to want to do the program!

So far it has been very positive - we will post updates as we explore this option. Any helpful comments about direct experience with this method, or similar methods, would be welcomed!

Emotional Day!

It has been a while since we posted anything.

Mostly because things were sort of coasting along as far as the scoliosis and the brace, but also because we have been buried under snow and our routine has been challenged time after time with snow days and rescheduling!

Recently though, Dancer Girl had been complaining of her brace not fitting correctly and things just not feeling right.  We made an appointment to hopefully get things adjusted to relieve the discomfort.

We are looking at the real possibility of being brace-free by June so obviously didn't want to hear that she needs a new brace.

              The news was not what we hoped...

Dancer Girl has grown about another inch, despite us all thinking she had stopped. Her brace clearly doesn't fit properly anymore and can no longer be worn effectively. The brace guy said he would recommend a new brace to her back doctor.

         Sigh.

We set up an appointment for two weeks out to let things sort out with getting the doctor's order, insurance coverage, etc.

Dancer Girls wasn't happy. So, we went out for frozen yogurt and did some shopping - seemed to help us both just a little bit!!

When we got home there was a message from the brace guy - he had talked to her back doctor who seemed to think that there really wasn't any point in getting a new brace since she was to be out of it by June.  By the time we got the brace fitted properly she'd practically be done with it!

So...basically she is done!  He said that IF she can wear it at all between now & our June appointment to go ahead...

         Right. Like that's going to happen!


                 She is thrilled! No more brace!!

I am happy for her but also wary - what if, when we get to the June appointment, her doctor says that the last three months brace free weren't good for her back, it was too soon, and she does in fact need a new one? That will be devastating. We will deal with that if it happens, (and will be praying that it doesn't) but for now Dancer Girl is looking forward to sleeping well again!

Nights it is...

Dancer Girl really wanted to try and go without the brace at night when her hours were reduced.  We tried for a number of weeks to make it work but we both quickly realized that we were juggling her busy schedule and brace-free activities so much she was in it most nights anyway to get her hours in.

So she wears it only at night now.  It seems to be working alright most nights. And, she even got a weekend free of the brace at a youth retreat up in New Hampshire recently.

Now that she is in it mostly at night her need for clothes that fit over the brace has been reduced.  The ones she has still fit fine though so if she needs to she can wear it during the day and still have it be nicely concealed. (The line at her waist on the photo is from a belt, not from the brace. The sweater was found at TJ Max).

Maybe our next post though will be what she chooses to wear over it at night... haven't done the pajama post yet!

Happy New Year!

We hope that everyone reading this finds peace and joy in the coming year, even as you are likely dealing with scoliosis and a back brace, or know someone who is. We know it can be difficult, frustrating, and sometimes physically painful, but we also know that you can come through it with grace and strength.

We are almost at the one year mark in the brace and are looking toward Dancer Girl being free of it this year, hopefully by the time the warm summer weather rolls around. But, nothing is certain yet so we take it one day at a time.

My prayer for Dancer Girl this year is that she will realize how strong she is, how much she has grown, and how much her friends & family love her.

My prayer for us is that we will realize the same - that Dancer Girl is growing up and is able to handle more than any of us may think, and that she is surrounded by wonderful people. For that I am truly thankful.

My prayer for those of you reading this who are struggling with scoliosis is that you will discover your strength and that you will be surrounded by loving, understanding people who will walk with you through this journey.

And, my prayer for those of you reading this who know someone with scoliosis is that you will know how to be supportive and encouraging in the pains and the triumphs in the coming year.

Under the brace, for boys...

Someone asked a question on one of our posts about what to do about clothes for boys in a brace since most of the information found online is for girls. Great question...

She was specifically asking about what to wear under the brace. I suggested looking for "seamless tops for boys" and stumbled across a few ideas that I thought I would post for others who may be struggling with this as well.


Look for ...seamless or minimal side seams

             ....tight fitting style so it doesn't bunch under the brace

            ....not too thick because it will be warmer in the brace already

            ....tanks are probably best but short & long sleeves may also work in colder weather depending on what is going over the brace


Here is what we found so far - we will keep looking! (most of these are t-shirts rather than tank tops)


Boys sizes

Smart knit kids (t-shirt)

Fun and Function tees


Teen/Men's sizes

Jockey Seam-free crew

Sierra Trading post t-shirt


Expensive, but...

Winter Kids base layer, long-sleeved top (boys/teens)

Spanks control tank (men)

Macy's One Flack Jack seamless tank (men)

Macy's body shaper seamless t-shirt (men)


NOTE: I realize this last group is pricey but it made me think that you might be able to find something similar but cheaper in the performance wear section of a sports store, especially on the sale rack, or a similar section in discount stores like TJ Max or Marshall's...

Please feel free to comment with your own ideas if you have come across better options!