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Functional Scoliosis – Leg Length Discrepancy.
Kye had his 9 year well check in August (yes, WAY away from his actual 9th birthday #eyeroll) and I discussed a bit about some concerns regarding Kye in his well check post here.
In the post I did not go into much detail as to the concerns or what results we’d received at that point. I wanted to wait and decide how to best move forward in sharing information and what exact information we’d be sharing as well.
During Kye’s 9 year well check they did a scoliosis screening of his back. The PA said she saw some curvature (which Zach and I could see too when she showed it to us…one of his shoulder blades appeared higher than the other) and that she wanted him to have a scan done to see how much his back was curved. She said she was guessing it was very minor…1-2 % curvature and that they’d just want to have a scan on file to be able to compare moving forward and to have a baseline to compare to if he were to have further curvature in the future.
So we went right after the appointment to go get the scan done. Kye did super well for it and the whole process was pretty neat. He stood up for the scan and it took images of his entire back!
My easy going patient!
We were anticipating a minor curve and expecting it to be a non-issue and something that would just be a “keep an eye on it” situation. Getting his results was a large headache. I got a call from our dr office simply telling me that he had 11 millimeters curvature and that they’d discuss it at his next visit…in March.
I called back and said I had no clue what those results meant and wanted to speak to someone about it. It took multiple calls back and forth to finally talk to the PA we’d seen that day and she looked over the scan and said it was odd of the dr who reviewed it not to give a degree of curvature so she had to call him to get him to re-read it.
Y’all. I want to say to everyone right here: you are your child’s advocate. YOU. I felt stupid and like I was annoying the staff at the pediatricians office by calling so many times and having so many questions and pushing for results that made sense. But I’m so glad I did.
The dr re-read the scan and they called me back the day before we left for our week long California trip and told me that Kye was diagnosed with moderate scoliosis (thoracic scoliosis). He had an 11 degree curvature of his spine. Not 1 to 2 degrees at the PA had predicted, but eleven.
From what I read anything over 10 degrees is diagnosed as scoliosis and to be nine years old with an 11 degree curvature was very concerning. Moderate scoliosis is no joke and not just something to “watch and wait.” It could mean he might need a back brace, or even surgery at some point.
His PA was also concerned and said they’d be calling me asap to schedule an appointment with a specialist. She agreed it’s not a “wait and see” situation and that we needed to be seen by someone who specializes in children’s scoliosis and that we needed to see them soon to be able to start any sort of plan they may have for us to try.
I tried my best to put aside all the thoughts and concerns I had during our trip away. I tried hard not to let my “mama guilt” take over. 11 degrees? How did I miss this? How did I not NOTICE? Kye has complained of back pain before and I’ve brushed it off as “growing pains.” What kind of mother doesn’t realize her child has such an obvious curve in his back?!?!
I had an ongoing list in my phone of questions I had for the specialist. Would Kye be able to ride rollercoasters? Jump on trampolines? Play sports? What other limitations would he have?
From what I read scoliosis has a large affect on sleep due to the way the spine attaches to the brain. Did they recommend a special pillow? Mattress topper? Any other tips for helping him get good quality sleep?
I also wondered if any of this could be due to his growth delay issues? No one we know in either side of the family has scoliosis. Were there things we could do to help improve his curvature? Prevent further curving? Special chairs or ways to sit? Strength training? Other exercises to help? Would he have any pain?
Our specialist appointment ended up being at the very end of OCTOBER. We had his initial scan done in July. Didn’t get results until the first of September and couldn’t see the specialist for six weeks after that. So. Frustrating.
I do want to discuss our hesitancy to tell others about Kye. We believe in the power of prayer. And we appreciate so much the many times our community have lifted us in prayer. But there are downsides to sharing everything.
We have recently walked the medical health concern path and saw both positive and negative elements to sharing Zach’s health concerns with everyone. We didn’t want Kye to be bombarded by well meaning people asking him a bunch of questions. We also didn’t want to be hearing everyone’s stories about scoliosis. How so-and-so needed a brace, how so-and-so had surgery. We didn’t want to hear a bunch of advice or input. Or guesses as to what could be going on.
We don’t have regrets about sharing Zach’s story, but we just wanted to handle it a bit differently for our child. It’s important to us to shape things a certain way for him. If this was going to be a lifelong journey that he’d be walking…we wanted to help him find the positive, focus on the positive, and not let any diagnosis affect how he views himself.
My mama heart struggled in a big way with this diagnosis. It’s my baby! Sure, scoliosis isn’t the worst thing in the world. But I also feel like my kids have SUCH a high chance of walking the path of auto immune disease crud that I just couldn’t wrap my head around such a random diagnosis. Like dude, the genetic odds are already stacked so high. Can we PLEASE not have any RANDOM crap?!!
The day of the appointment I went in feeling good. EXCITED even to have solid, concrete answers and to make a game plan moving forward. I’d already prepped Zach to know that I wouldn’t be taking “wait and see” as an answer. A common practice in the medical community is to just monitor scoliosis in children and wait for it to be at a certain point where it’s considered bad enough to take action. Nope. Not waiting around for that!
The specialist only comes to our town once a month so we had the appointment that morning at our local health clinic. Leading up to the orthopedic appointment Kye knew there were some concerns with his back and that we were going to the dr to find out things and to create a plan. We had discussed that he may need to do some exercises to help make his back stronger which would help make it easier for him to sit up straight etc. I wanted to be honest with him but also keep it simple. No need to worry him or create any sort of concern in his mind until we knew more!
When the doctor came in he was very nice and to the point. He said in reviewing Kye’s scan he would agree with the 11 degrees of curvature but he’d actually say it’s a range that goes all the way up to 16 degrees of curvature of Kye’s spine. So in the range of 11-16 degrees.
He evaluated Kye. Had him take of his shirt and bend over multiple times. He asked Kye some questions (mostly regarding if he had pain etc which Kye does have occasional back pain).
He also brought in these little foam pieces that varied in height and had Kye put one of his feet on the block and then bend and then switched to another height and had him bend to see etc.
I had all these questions prepared and they all went right out the window when the doctor said Kye does NOT have moderate, thoracic scoliosis.
This doctor changed Kye’s diagnosis to “functional scoliosis.”
What is functional (or functioning) scoliosis? (defined by Medicine.Net)
“Functional scoliosis: A structurally normal spine that appears to have a lateral curve (scoliosis).
Nonstructural scoliosis involves a temporary change of spinal curvature. This is caused by an underlying condition such as a difference in leg length, muscle spasms, or inflammatory conditions, (e.g. appendicitis), which may produce muscle spasm. Functional scoliosis is treated by correcting the underlying problem. The spine itself needs no treatment.
Functional scoliosis is also called nonstructural scoliosis as opposed to structural scoliosis in which there is a fixed curve of the bones of the spine (the vertebrae).”
Long story short? Scoliosis is NOT the problem going on with Kye. It’s a SYMPTOM of a different issue at hand.
I was truly shocked. It was such an opposite sort of shock than I was ever expecting or have ever had before. With Zach’s health news I was overwhelmed and totally thrown for a loop with his diagnosis. It was the worst case scenario. And it was our reality.
But this time? I was overwhelmed and thrown for a loop in the most positive way. Like HOW was it possible that we’d get the news that our son did NOT have scoliosis?!?! I never, ever, EVER thought we’d be hearing those words. I was totally confused about it and just lost all train of rational thought. I truly had to keep reminding myself that it was TRUE that he was FINE.
Every single question I had went out the window because none of it applied anymore. I still went through the list and was like “Okay so he’s fine to play sports? And fine to jump on trampolines? And his sleep isn’t affected? And this isn’t genetic?”
We are going back in June to see the doctor again and Kye will be having another scan to compare and we will continue having yearly visits most likely with the specialist for awhile to make sure things stay okay.
We were able to see his scans (which were cool to see) and see the massive amount of curvature but also the doctor pointed out that the spine is curved, but not twisted and typically with scoliosis you have both. Usually a scan of scoliosis will show almost like a rollercoaster of spinning along with the curving. Which def isn’t present in these scans!
We are so, so thankful for this news. As I mentioned though, functioning scoliosis is when scoliosis is the symptom of another issue at hand. Before moving forward to discuss that portion of things I wanted to share a bit of what I’ve learned in this experience to help other mamas:
- Be sure to ask for a scoliosis screening if your child’s doctor doesn’t do them at visits (ours start at age 9)
- Be sure to FOLLOW UP. Call. Ask questions. PUSH for results. If something doesn’t make sense, PUSH HARDER.
- DO NOT “watch and wait.” There are MANY things that can be done or at least tried to help prevent further curving and possibly even adjusting some of the curvature that’s already there. If your doctor doesn’t suggest things to try, find someone who will.
- Truly stop and think about how to handle a discussion about your child’s health both with your child and with others. Think through the long term and how telling will affect your child, both in the way the news is shared with them and also how it will affect them if/when others know.
We literally told a very, very small handful of people about Kye and I’m so thankful we made that decision. I’m thankful we didn’t just watch and wait with his medical stuff…but that we DID wait on the personal side regarding limiting what we told him AND what we told to others. I’m thankful we carried that burden of worry during the many weeks where we weren’t sure how this would affect him long term. As his parents, that’s our job. His job is to be a kid and I’m just so glad we decided to keep things limited as to how much we told him and how much we told others.
The doctor explained functioning scoliosis to us and while I was thrilled Kye didn’t actually have scoliosis I was also immediately freaked out about what the underlying issue actually was. My first assumption was that it’d mean more tests…more doctors…more waiting.
But it wasn’t like that at all! The specialist told us right away that Kye has functioning scoliosis which is the side effect of having limb length discrepancy (specifically leg length discrepancy).
What is leg length discrepancy?
It’s simply when one leg is longer than the other (or you could say one is shorter than the other since technically the shorter leg is the one that causes the issue).
Basically Kye’s left leg is ½ an inch shorter than his right leg. Limb length discrepancies can range from ½ inch difference to up to 2.5 inches in difference. Kye has structural discrepancy as his leg length is the difference (his right leg is his longer limb, his left is his shorter limb). With having one leg shorter than the other, Kye has always walked in a way that causes his spine to curve to adjust for that length difference.
When the doctor had Kye stand on the little blocks and then bend over he saw NO curvature of Kye’s spine. He showed us Kye’s spine when Kye stands normally and then showed us the comparison when Kye stood with one leg on the board. And the difference was CLEAR.
No board = curvature. Board = no curvature.
I literally couldn’t even think of a single question to ask but thankfully it’s a pretty straightforward situation. Kye literally doesn’t have to do a SINGLE lifestyle change. He simply just has to wear a small heel lift wedge in his left shoe. This will make his legs the same length and totally and completely cure the scoliosis issue.
He can play any sport. Do literally ALL THE THINGS. He just needs to wear the little lift in his shoe.
When we do his scans in June they will put a ruler or tape measure in with his scan to show the differences in his leg length. This will give us a more accurate look at the true measurement of each of his legs and show the lim length discrepancies. We also plan to have them scan his back both barefoot (with the leg height difference) AND while wearing shoes that have his little lift in them to make his legs the same length to be able to compare how it changes the curve in his back.
The doctor felt confident that by Kye wearing the lift in his shoe that all the scoliosis related issues would be completely gone. I’m very thankful if any of our kids had to have this concern that it’s one of the boys since boys always wear tennis shoes anyway!
We did purchase Kye this pair of house shoes/slippers to wear at home. As the more consistent he is in always wearing the heel lift the less often his back will curve due to walking improperly! By wearing the heel lift at home around the house as well as every time he leaves the house his limb length inequality will truly be a non-issue.
We had to special order the heel lift wedge to fit Kye’s shoe size and will have to order new ones every time he goes up in size (thankfully the wedge was only $25). We made sure Kye understood the importance of always wearing it and he’s done SO well being super responsible and remembering to change it out to his house shoes/different school shoes/etc.
As far as the future goes we don’t know what will happen. He may grow and overtime his leg length may even out. As his growth plates shift and stop growing, things may become balanced. He may no longer have any leg length discrepancies as he ages. The only real “treatment”? The doctor joked that he could break his left femur and then it’d even out 😉 Even if it never evens out this is a very, very simple solution and having the discrepancy will not cause any known long term issues or side effects. I do have to keep reminding myself to say it’s his LEG that is a different length…not his foot haha
When he first started wearing the heal wedge we were told to be prepared that he may have some pain and discomfort. His whole life he’s used to walking one way (favoring his longer leg and making adjustments for the short leg) and now with his legs even he’d be walking a completely different way and his body would no longer have to be making any sort of adjustments. The difference in his posture is crazy! Instant fix!
Thankfully he’s so young that he had NO issues at all with wearing the shoe lift. He said it was comfortable right away and he especially loves the house shoes. He has complained sometimes of muscles hurting, especially at Disney or when we do a lot of walking but that will balance out over time once his body adjusts. His body was using different muscles and such to compensate for his leg differences so now that they are even he’s working out muscles in a different way than he probably was before. I think it’s so cool how the body works and how quickly it adjusts!
If there is a large enough leg length inequality, then special shoes may have to be made to balance them out or even surgery is possibly needed to make the shorter leg longer (limb lengthening procedure). We are SO thankful that Kye’s is minor enough of a difference to only need the heel lift wedge and are confident moving forward that it will just be a new normal for him and part of his daily routine.
Celebrating our AMAZING news with a slushee!
Here is his heel lift, it’s 1 cm in height. It simply lays in his left shoe and gives him the bit of lift he needs!
My lounge kid was pumped for his new house shoes…and you can see how easily the wedge fits in his shoe too! It’s so neat how such a SMALL change can have such a HUGE impact!
Kye and I made this brief video showing the difference in what his back looks like without the heel lift in his shoes and what it looks like with it in his shoes. You can see the differences in the curvature of his back and the scoliosis being present vs being nonexistent!I am very, very thankful our PA checked Kye’s back at his appointment. I’m also so thankful I trusted my “mommy gut” and pushed until we got legit answers. I’m so thankful for the specialist for seeing what was going on. I have heard of cases where people go their whole lives battling scoliosis issues not knowing the entire time that it was all due to a small difference in their leg lengths. I’m so thankful we have these answers and that Kye is so young and that this isn’t a bigger deal or a cause for any long term concerns or any sort of impact on his life.
It’s so refreshing to have a best, best case scenario to report 🙂