Wednesday, October 17, 2012

Juvenile Idiopathic Scoliosis (and us)

A few months ago, I took my Gymnastics Queen for her 9 year well visit.  I never worry about much when it comes to her well checks, other than her small stature.  While she is all muscle, and fit as a fiddle, I can often be heard asking "Did she grow?  How's her height?"

I then breathe when I hear she grew a centimeter since last year.  And I thank the heavens she is a girl and not a boy who will forever wish he was over 5'0".

To finish up our last well check, our pediatrician took a look at my daughter's spine.  By this time, I was already checking my phone and packing up to leave.  

Until, the doctor told me she was "rather crooked."

Say what?

I was floored.   She's a gymnast.  She turns and flips and balances and swings from high bars that would make me pee my pants.  How could she be "crooked?"  I was even more floored when our doctor ordered x-rays.

Our pediatrician went on to explain that her age is a concern, because she hasn't really grown yet.  There is much more growing to do, which means there is a good chance her spine will continue to curve.  Scoliosis is more common in children going through growth spurts, not children who haven't had any yet.

In the next breath, she told me not to worry.

Seriously? 

I went home stunned, and of course I spent the night Googling "Juvenile Idiopathic Scoliosis" and scaring myself half to death.

Over the next two weeks, while waiting for the x-ray results, I spoke to many parents.  I decided it was crazy to worry.  Scoliosis is common, and the chances my little girl will need a brace are very low.

Very low.

It's been an eventful few months since that well check.  After I received the news that my baby girl was in fact, in need of a Pediatric Orthopedic, I really started to worry.  I worried about her in school, I worried her gymnastics days would be limited.  I worried all because of a curve in the spine I had no idea was there. 

Naturally, I Googled and Googled until I found a Pediatric Orthopedic that was top notch.  I found a phenomenal doctor in New York City, and we visited his offices in Westchester.  During our first visit my fears were confirmed, he explained that she needs treatment.  I listened as best I could to this brilliant doctor, while handing Moopa fruit snacks and juice boxes to keep her quiet.  He spoke of back braces, and surgical options down the road, and "Scoli Scores" and many other things that I'd never thought I'd have to think about.

I decided to think about only what was necessary, and to let everything else fall into place.  I can't change what is to come, I can only work around it.  I can only teach my daughter that life is what you make it.  You need to play the hand life deals you, and rock on like the rock star you are.

Yesterday, I drove my baby to Westchester to pick up her back brace.  She needs to wear her brace a minimum of 18 hours/day.  It comes off only for gymnastics, necessary P.E. classes and showers.  I was afraid she would cry when she saw it, that the reality of the next five years would crush her like a million bricks falling from the sky.

But nothing crushed her.  She smiled.  She laughed.  She told us it felt fine, and she wore it all the way home without complaint.  As we drove she named the brace "Katie" and we decided to stop and buy a few shirts that hid "Katie" well.

Last night, she took off her brace for her three hour gymnastics practice, and she immediately put it back on for the ride home.  She slept in it, and she got up this morning and got right on that bus.

Kids are amazingly resilient.  They have a magic about them that is inspiring.  I keep telling my daughter she will have the best posture in the world by the time "Katie" comes off for good.  And until then, my baby is rocking that brace like the rock star she is.

Every challenge we overcome builds character, and this brace is hopefully the only challenge we'll have with her scoliosis.  I pray it prevents more curving, but we don't know what the future will bring.  Until then, we pray, and we play the hand life deals us.

*I asked my daughter if she minded me posting about her experience with scoliosis.  I asked her, "Do you mind?  Are you okay if many people know?"

She answered, "It's okay if they know, I want them to learn about it."  Kids.  They are the best teachers in the world.**


25 comments:

  1. what an awesome child you have !!

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  2. She's pretty amazing, your Queen. I don't know much about this but I know good parenting when I see it. You're a great mama! She'll come out of this just fine. Blessings.

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  3. I have scoliosis. They found mine in late middle school. I have two curves in my spine, though neither of them to the degree where a brace was necessary. I was just told my curvature would be monitored as I grew. I didn't grow much....and I suppose that has been a blessing in disguise. I'm 5'1" now and was told had I grown more, my curve would be worse than it is. My scoliosis isn't noticeable to people who don't know I have it, but upon closer look, you can see the curves plain as day. My right hip is also slightly higher than my left. I've learned to deal with the way it looks.

    My scoliosis never caused me any pain until my last 3 years of high school. I would be sitting in class and be in so much pain, I'd have to stand up or I was going to scream. I began telling my teachers that they needed to allow me to get up and stand in the back of the class if need be to alleviate my back pain. It got to the point where I went back to the dr. (a few different ones actually). Again, I was told there was nothing that needed to be done brace wise for the actual curvature, but that my pain was coming from weak, strained muscles due to the curve. I began going to physical therapy where I was taught specific stretches and weight lifting to help strengthen my back (and shoulder....abdominal...etc) muscles. I can't tell you how much of a difference that made in my life. After 3 years, it was great to actually live life mostly pain free.

    I will say that my scoliosis was of some concern during my pregnancies. I had to be extra careful with what I did so as to not put any extra strain on my back. The weight of my belly was enough strain as it was and I did have a lot of intense back pain throughout all my pregnancies. And getting an epidural with my first son was difficult because of my curvature. Since then it was natural childbirth for me!

    Now a days I have a bowflex. When I don't keep up with it, I have the most horrible back, shoulder, and neck pain. I have poor posture because of my scoliosis.....it makes my shoulders naturally slump forward. I have to constantly force myself to sit up and push my shoulders back. It's painful, unless like I said, I've been doing well with my bowflexing. I'm not sure what the future holds for me, but as for now, if I am good about working out I can keep my pain in check.

    I'm sorry I kinda wrote a novel. Just wanted to let you know my story. Scoliosis is very common. Some people have it and don't even know because it's to such a small degree. Others, like me, have it....just not "bad enough" for a brace or surgery or anything, yet deal with the pain of it on a daily basis. And then there's ones like your daughter. I'm really glad they caught your daughters early. She has a super high chance of being perfectly fine after her time with the brace is done. I hope she doesn't have to experience any sort of pain because of hers. Just keep in mind it is possibility.

    You're an awesome Mama with a very special young lady. I'll be thinking of her!!

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    1. Thanks! Your story is very helpful...and I am now grateful my daughter will be petite, because the more you grow, the more you curve! I never considered pregnancy or pain in the future, although her dr did mention future back pain once the degree gets severe...and its another reason to be aggressive with treatment now! xo to you!

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    2. You're very welcome. Wishing everyone the best!

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  4. Jodie, what a great mama you are!!! Anything that happens to our babies, it is the hardest to seal with, even if it is a 5 hour stint in the ER. Every mom has a lit to learn from you. I look up to you do much, and more so now. Xoxo

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    1. Amory, you are one amazing mama yourself! thanks doll!

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  5. Your daughter is amazing but you, as her mama, are also amazing. Kids are resilient but good parenting helps them develop that skill. Keeping my fingers crossed the brace does it's job.

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  6. What a sweet daughter you have - and with such a great attitude! Praying for y'all! (She's so cute!)

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  7. Hi Jodie,

    I have the same type of scoliosis, and spent about 5 years in a brace like that one. My curve increased very rapidly anyway and I have an upper curve in the mid 40 degrees and a bottom curve in the mid 60 degrees. Big curves.

    I chose not to have surgery because it meant 6 mos. in a full body cast. I didn't really have back pain until I was about 32, and it can be irritating, but life goes on. I had 3 great pregnancies and I totally agree with Mama Hauck. Natural childbirth! Took 11 tries to get my epidural for my first baby, so I went natural with the other 2, and that was so much better. Excercise is another huge key, and I've been pretty bad about that lately. It really does help.

    One thing I'd caution about is to make sure that she gets a new brace very quickly after her growth spurt(s). My brace was made at Johns Hopkins, and they just wouldn't make a new one until insurance said it was time, even if I'd totally outgrown my brace and it was tearing my skin off my hips and not bracing my curve correctly.

    I always carried a set of pliers and a screwdriver, just in case the hooks bent too far or popped off... We also found that the local shoe repairman was the best for emergency brace repairs, since we lived 4.5 hours from Hopkins.

    Best wishes,
    Maria

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  8. What a great daughter! And what a great Momma she has!

    I also have the same type of scoliosis and was diagnosed at 11 with a very severe curve that required immediate surgery. I was (and am) petite and because my curves kept worsening after surgery I had to have 2 more over the next 15 years. Now at 37 my curves are fine and I had no issue with my pregnancy although I did have to go pain med free as I am physically unable to have an epidural or spinal.

    It's great that you've found it early and are seeking treatment right away. Today's treatments for scoliosis are light years ahead of where they were back in '86 when I was a kid. Best of luck!

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  9. You're a great Mumma, end of story.

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  10. Thank you so much for such an inspirational story. You and your family have truly handled this situation in a positive way. I am currently in a similar situation. At my daughter's 7 year checkup, the nurse practioner noticed my daughter's spine was crooked. After seeing an orthopaedic surgeon for two visits, he immediately recommended a Boston Brace. We then went for a second opinion with Children's Hospital in Boston, and the Doctor wanted to collect more data before committing her to a brace. We just went for a four month checkup, and she is remaining stable. Although the doctor believes a brace is in our future, he is cautious about placing her in a brace too early. (Her curve is currently 18-20 degrees)

    You are so correct with stating how resilient kids are. When the doctor showed her the boston brace and then asked her if she had any questions, Emily said, "Does it come in a kitty pattern?". My eyes filled up with tears for how proud I was of how she was handling this situation.

    I would love to check back and hear about the progress your daughter is making. I know that my family was devastated by the news of a brace, especially looking at the years ahead. The internet does not have a lot of information for kids of this age, and I just felt so relieved to read how well your daughter was handling it all! Keep up the great work.....you have a great little girl! :)

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    1. I wanted to send a response to you - we had our check up and we are holding steady with the brace. She is still living her life and managing the brace well! Hope your daughter is still brace free for now! :)

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  11. Bravo for her! I think she is really brave to let you post about this! I was you daughter's age when I was diagnosed with Lower Lumbar Scoliosis. I was monitored for two years(ish) before I reached the "cut off" & needed a brace. I unfortunately was in 6th grade, which for me was a time of uncertainty & self consciousnesses. I was scared to tell my friends and refused to talk about it. I didn't want to be made fun of & thought my friends would. Its been 15 or so years since I have even had to wear my brace & I am still finding this really hard to talk about. I don't really know your daughter, but I am finding myself feeling really proud of her. :D

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  12. Katie is really amazing! At her age, she is already an inspiration to other kids and moms who are going through the same thing. I hope her good character will continue to flourish. And as she continues to wear her brace, I pray that her spine will be corrected so she can be the best gymnast. All the best!

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  13. I was diagnosed with scoliosis as a child & wore a brace for years but never had to have surgery..the curve is still there but not that noticeable unless I bend over & you will notice a slightly higher side of my back..I have to say that I have not experienced that much back pain due to the scoliosis. No one really notices unless I actually show them the higher side of my back when I bend over to touch toes.I am also petite so maybe that helped in the curve not worsening as well...Hope your angel's spine is corrected w/ the brace..

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    1. I love to hear stories about people/kids who are experiencing or did experience the same scoliosis. I also love to hear that surgery wasn't necessary and the brace did its job in preventing the curve from worsening. There are so many people who have been so kind in sharing their story - thanks for yours as well!!!

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  14. What an exceptional child! With your daughter's amazing attitude (and yours!), I'm sure that no matter what happens in her life, she will handle it extremely well.
    I was diagnosed with a severe case of scoliosis when I was in 5th grade? (I don't remember exactly how old I was), and began wearing a back brace in middle school (7th grade). I have always found that even during life's most difficult times, our attitude (and our faith) can help determine how we make it through, and her response to getting her brace is inspirational.
    I don't know if you're worried about how other children will react... for me, when it comes to other kids, I was very up front with my friends and told them about my brace, how it was affecting me, and any limitations it was causing, and didn't have any trouble at all. The only time kids at school did make comments were when they didn't know what was going on (if I was walking differently or something) - once I explained why (that I had a back brace), any comments stopped.
    Because my scoliosis was so severe (and I was taller and generally bigger than your daughter - several people have commented that being petite may work in your daughter's favor), I did need surgery. Even still, I have found that because of what I have gone through, I (hopefully!) can be more sensitive to the difficulties that other people face than I might have otherwise been, and can try to offer them encouragement. With your daughter's beautiful smile and positive attitude, I am sure that she will be a huge encouragement to many others throughout her life. While I'm thinking of it, it might not be a bad idea to get a second opinion on her treatment, even though you saw such a great doctor. Treatment for the spine is a lifelong decision, and bad backs can cause a great deal of pain in the future. (The only reason I'm saying this is because I"m dealing with issues now - but I know that treatment has come light years from where it was when I had my surgery and other treatments so many years ago).
    I hope and pray for the very best for you and your family! Thank you for sharing your story.
    God Bless! Sincerely, Wendy

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    1. Wendy, thanks so much!! i am very proud of her and her attitude. She has been very open and honest about her brace, even taking it off in public when she is ready for her few hours of freedom! :) We let anyone know why she wears it - if they ask or if they are just "looking." You are right, educating others keeps them from making comments. God bless and thanks again!!!!

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  15. I was diagnosed with scoliosis at my physical exam this year as well. I was 14 years old, and now I am almost 15. They told me I had scoliosis and recommended I get X-rays taken. I had an upper curve and a lower curve. They told me to then go see a specialist at Gilette Childrens Hospital where they told me my degrees of the curves and proceeded to tell me to come back in 4 months and we'll see how your back is then. I am a varsity swimmer and I have been swimming practically my whole life. Fortunately, swimming is great for your back. 4 months later we return to Gilette for more X-rays and we found that my scoliosis is worse--12 degrees on the top curve, 31 for the bottom. They tell me my best option is to get a brace, wear it for 2-2.5 years (my last two years of high school) for at least 20 hours a day, only allowing me to take it off to swim and shower...much like your daughter with gymnastics. We went to get fitted for a brace about 3 months later. In the mean time, my mom did a lot of research on success rates of braces, other options, surgery, etc. Surgery was the only thing we wanted to avoid, we'd do anything to avoid surgery. I also play the trumpet, I'm in about 7 different musical ensembles at my school, I play for Minnesota Youth Symphonies, and I'm even considering a music major performance in college. We were worried that wearing a brace would constrict airflow so we asked the Dr fitting me if it would affect my lungs at all. He told us we would have to wait and see, to try it out. Turns out that braces cut your lung capacity by 20%. We continued to order a brace. We later learned that we could've done a Scoli Score test as you mentioned as well, but since this option was never mentioned to us, we didn't do it. A Scoli Score could have told us how bad my curves were going to get and whether not further treatment was needed. My mom found a clinic that was founded in St. Cloud, MN (the state where we live) and has other clinics all around the country. It is a chiropractic treatment, which can leave people a bit skeptical. They are 2 hour treatments, 3 times a week, unless you do the bootcamp where you stay at a clinic for 2 weeks and get all your treatments done then instead of coming 3 times a week. It proved very successful. Dr. Woggon is the founder of this clinic, called Clear Institute. He is a great man with wonderful people working with him. It turns out my X-rays were marked incorrectly at Gilette and that my bottom curve was only 21 degrees, but after these treatments, my top curve is now 4 degrees and my bottom one is 13. I HIGHLY recommend him as an option, check him out. Another thing about bracing is that there are no proven studies that show bracing is effective, and with Dr. Woggon at Clear Institute, I am just one of many proven successes.

    http://www.clear-institute.org/
    Feel free to respond with any questions :) good luck!

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  16. Hi Jodie,
    Your daughter sounds amazing and I hope my daughter will follow in her footsteps. My daughter was just diagnosed at her 7-year well check up appointment. she has a upper curve at 28 degrees so bracing is immediate. I have a couple silly questions to ask....what type of tank tops is your daughter wearing under the brace? Are they cotton, seemless? Where are you buying these? Is she wearing her pants above the brace or under?
    As you have mentioned, we have a long road ahead of us, but hoping it is uneventful and surgery will not be needed.
    Thank you and good luck with everything!
    Holly

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    1. Hi! Your daughter will do great - kids are so resilient! I bought most of our tanks at target or old navy. The key is getting the plain cotton that have no built in "bra" - and the ones we found were plain with thin straps. We did all leggings under the brace and jeans with elastic waist rather than buttons. If you sew you can also cut the waist out of jeans and sew in stretchy cotton - kind of like making maternity pants - so they can go nicely under the brace with no bumps or buttons. We had a friend make those for us. My daughter got a new brace this year - a charleston - which is pretty restricting but only worn 10 hrs at night. She isn't a huge fan but likes dressing like a kid her age again! Good luck and feel free to email me - jodie@allgoodinmommyhood.com with any questions!! :)

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    2. Forgot to mention Justice makes a jean right now with a cotton elastic waist and no buttons - they are pricey for kids jeans but work great. Here is the link:
      http://www.shopjustice.com/girls-clothing/knit-waist-bootcut-jeans/4661172/605?pageSort=eyJzaG9wQnlQcmljZSI6ImRpc3BsYXkgYWxsIiwic2hvcEJ5U2l6ZSI6ImRpc3BsYXkgYWxsIn0&productOrigin=search%20page&productGridPlacement=3-3

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  17. I know this post is from 2012 but it brought me so much comfort today! Our 7YO just got diagnosed and will be seeing a specialist soon. She's a crazy little gymnast as well, so your post was perfect. Thank you for writing this and making me feel less alone today!

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