Moving On

Dancer Girl is graduating from high school in a few months. How did we get here so fast?! She will be heading off to college to pursue a BFA in 2D Studio Art with a minor in dance.

The Boston brace seems like a distant memory in some ways, but scoliosis rears it's head now & then to remind us of that time in her life. Her back occasionally hurts when she tries something new in dance, but for the most part she is able to anticipate and avoid extra stress on her curve. She now manages her scoliosis rather than letting it control her. (Cello Girl is a sophomore in high school. She has had no further progression and will not need to wear a brace. She also continues to dance).

Recently, as part of an art project, Dancer Girl did a series of paintings depicting the beauty in a variety of disabilities & difficulties. One of them was of a Boston back brace. It brought me to tears that she could make something so beautiful out of a painful time in her life, that she could learn from it and even be inspired to create a work of art.

Another favorite was of a ballet dancer that has a prosthetic leg. She dances en Pointe. The painting is based on a real person Dance Girl heard about. If that's not inspirational, I don't know what is!

We won't be posting here anymore but we will keep it available in case someone stumbles across it and finds it helpful. We were thankful for those before us who shared their experiences and are happy to be able to do the same in some small way.

We wish you peace and joy, even in the midst of the pain and difficulties that can come with scoliosis. You can come through it stronger than before. I've seen it happen in our own home...

Updates

It has been a while since we posted anything - busy life is to blame I guess.

We appreciate the occasional comments from people who stumble across our little blog and we hope that in some small way something here is helpful.

Some updates...

Schroth method - both girls are still doing their exercises...mostly...! We have appointments every few months to check in and they get re-inspired to do them regularly. Both girls are keeping steady with their curves it seems, both show improvements in lung capacity which can be negatively impacted by scoliosis, and both have improvements in various smaller areas (the uneven hips are more even, the smaller curve in the upper back is less pronounced, etc). Very encouraging!

Pain - back pain for Dancer Girl remains drastically reduced from her pre-brace, pre-Schroth days. It does pop up now & then but she is also pushing herself as a dancer so that is probably to be expected. Cello Girl rarely complains of back pain.

Dance - both girls continue to dance. A lot. It seems that the only real issues, particularly for Dancer Girl, are with any "acro" types of movements. Their Schroth specialist (who is also a dancer) has told both girls to avoid that style as much as possible - hyperextensions of the lower back, particularly if they are repetitive or last for extended periods of time, put too much stress on their biggest curves.

Both girls are en pointe now and show no particular difficulty with it related to their scoliosis. Sometimes there are some movements in modern dance or African jazz that put strain on Dancer Girl's lower back, but she is learning to anticipate those moments and adjust accordingly.

Brace - Dancer Girl remains brace-free and is not expected to need it again as she has officially stopped growing. Because her curve is at 28 degrees though, we will keep an eye on it to make sure it doesn't get worse as she gets older.

Cello Girl had a growth spurt but her curve seems to be holding steady. Her recent x-ray showed a slight improvement actually, although it is within the margin of error. Still, even if it's an error, it's in the right direction! So, no brace for her either!

Scoliosis Take 2

Dancer Girl's younger sister saw the back doctor this week...

           and...

                 she has a lower back curve in a similar location as Dancer Girl.

                             It is 18 degrees.

She has had a huge growth spurt recently which seems to be slowing down so hopefully things won't progress as quickly from here as they did for her sister. We will go back in 6 months for another x-ray.

In the meantime we are going to start her on the same type of Schroth program as Dancer Girl to see if we can slow/halt any progression. She has her first appointment with them in a few weeks.

Now I guess we need a blog name for her...

She is a dancer like her sister, but we can't really call her "Little" Dancer Girl as she is standing close to 5' 5" at age 12!


She also plays and loves the cello so I guess we will go with
"Cello Girl ".

Cello Girl handled this all very well. I think it helped to have seen her sister go through this but also to see that her curve is not as far along as Dancer Girl's was at her age. She was certainly relieved that there wasn't an immediate need for a brace.

We will be keeping an eye on this over the next few months...

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!