Adolescent Idiopathic Scoliosis

It’s been quite a summer.

Laini had her 11th birthday check-up last Spring, and during the “bend over touch your toes” part that all girls have to do the pediatrician noted a problem. She sent us for x-rays which confirmed the diagnosis of adolescent idiopathic scoliosis. Now that I know it’s there, you can see that Laini’s right butt cheek sits a tiny bit higher than the left. It developed quickly. She was fine at her 10 year checkup the previous year.

Laini’s is the “S” type (curve at top and bottom) with 11 degrees at the top and 28 degrees at the bottom. We visited a pediatric orthopedist in June. The top part is not a concern, but the 28 degree at the bottom needs to be treated. As Laini is just beginning puberty the curve will likely get worse without intervention. If it gets towards 50 degrees, we’re talking spinal surgery. So the goal now is to halt the progression of the condition.

On August 20, Laini started wearing a Thoraco-Lumbo-Sacral-Orthosis (TLSO) brace (commonly known as a “Boston” brace) for 20 hours per day. The brace won’t reverse the curve. But if she can make it to high school with a curve no worse than 30 degrees, she’ll be okay.

This is it:

bb_thoracic.jpg

I’d say it weighs around 3-5 lbs. give or take. Laini says it feels like she’s carrying a backpack all the time. She also said it feels like one of Grandma’s hugs. She’ll have to wear the brace for approx. 3 years. Thank goodness our insurance has covered 100% of the expenses, considering we are constantly fighting with them about her Autism-related treatment.

My daughter has been amazing. Never once has she cried or complained about any of this. She’s had so many challenges in her life, that this is simply one more for the pile. The words, “why me?” have never escaped her lips. I thought she would have trouble getting up and down her bunk bed with the brace on, but she managed to do it easily. She’s lost a bit of her independence that she has managed to build up because she relies on us to get the brace on and off so she has to wait for a parent before getting dressed in the morning.

Laini will be in a small private school this year, so our plan is to work with the school nurse to help Laini in and out of the brace before and after gym. She wears the brace over an undershirt, but under her underwear and pants. She takes it off for sports, occupational therapy, swimming and baths. We pick her 4 hour “free” window depending on what is going on that day.

I read Deenie as a kid. I thought the brace would make my already stand-out-as-different kid stand out more, but times have changed. With loose-fitting shirts, I have to tap Laini’s tummy to tell if she’s wearing the brace or not.

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2 thoughts on “Adolescent Idiopathic Scoliosis

  1. Brett says:

    Judi,

    This is my area and I may be able to offer some advice to thank you for the SOD forum.

    Typically we don’t brace unless there is evidence of the curve progressing – though some are more aggressive and brace immediately.

    There is no evidence to suggest any exercise is effective alone but electrical stimulation to the correct muscles at night can be as effective as bracing in mild cases and may be better tolerated by young girls. There is evidence that postural exercise as well as bracing or electrical stimulation is more effective in some cases. Adjustments, manipulation and choropractic do not work for this condition.

    A Millwarkie brace is standard and I would ask about this if the brace you are currently using fails to halt progression before considering surgery. It is consideribly more restrictive and less well tolerated than the brace you show.

    Surgery is usually performed if the curve progresses beyond 30 degrees. There are 2 current methods – Dywers Wires and Harringtons rods. Both are extremely invasive and use metal implants to fuse the entire thoracic spine. Dwyers wire tend to be used more if there is a rotational component to the scoliosis – termed a rotoscoliosis. In some cases the spine is fused to the sacrum.

    The brace must be worn until skletal maturity which in young girls is typically 16.

    • Judi Sohn says:

      Thanks, Brett. It’s been almost 2 years since Laini was diagnosed, and she’s doing very well. The curve went from 28 degrees to around 14, and her doctor is now confident she’ll avoid surgery. In fact, he let her drop from 20 hours/day in the brace to 12 and we’ll see at her next appointment if there’s any regression.

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