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Youngest Just Diagnosed With Scoliosis

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12 years 10 months ago #19627 by DO1day
Hi everyone. I'm in for a long night and I'm hoping someone has some soothing words for a troubled heart. I took my 2-year-old in for his well-baby check today and I pointed out something to the doc I had noticed for the last 3 or so months. My son's back seemed larger on his right side, and so did the curvature of his ribcage relative to his left. Well, we went for a thoracic x-ray (and a 1-year followup head CT because he has a rather large cranium), and he has a prominent thoracic scoliosis. I saw the film and I could not believe his spine had such a large curve. I told the technician that I thought it looked pretty bad and he said very quickly "Well it's not mild, but I've seen worse; not much worse, but I've definitely seen worse."

So, since I know little about scoliosis, I came home and started looking on the internet......back braces, spinal fusion surgery, angle of curvature, surgery complicated in children under 10 due to small size of the vertebrae, is it idiopathic? part of some larger abnormality?....now I'm frightened by images of deformities and wondering what the future holds.

To make matters worse, when I called my physician at 4:45 to see if they had any news on the films or course of action, I found out his brother passed away and he had to go out-of-town. So here I sit, feeling guilty for not catching it before his little ribcage rotated even a hair; and feeling guilty because the anxious mother in me really hopes the doctor can check in with his office soon and deal with my problem even though he has a bigger one.

It's just going to be a long wait because I'm done doing research on the internet. I don't know his angle of curvature. I don't know the course of action or its ramifications on his future. I'm completely overtaken by this. I think I'm dwelling on something that I'll probably hear is not that significant, yet I want to hear someone say that besides my mom. How about some other moms who know what it's like to apply to med school and worry if you're taking too much on?

I have 3 classes in the morning and then an interview at a med school tomorrow. I have a repeat MCAT in a little over a week that I need to annihilate. Yet tonight, here I sit spinning my wheels, wanting to know more, but pretty afraid to research it because I don't know his angle of curvature or probability of progression. I'm guessing since tomorrow is Friday and since my doc is out-of-town, I probably won't hear anything until Monday. Mom says not to borrow trouble; we'll deal with it; it's not like it's terminal. I know she's right, yet here I sit, dwelling. I'm wondering if I should drop one of my 4 classes before the drop deadline, cancel the MCAT.....slow my horses so I can prepare for surgery on my baby? I can't concentrate on anything else without my thoughts drifting back to whether or not he will have to wear a brace until he stops growing; will state aid cover this since I had to drop my job and my insurance......it could be worse, I know. Problem is, I don't know anyone with scoliosis. We don't even know why his head is large (first born has had no issues of any kind and he was a premie!).

I'm hoping someone out there has been through this and can gently tell me I'm over-reacting. Tell me I'm wigging, and that we caught it early, and it's just another of my brain's crafty excuses to avoid Physics! Soon I will hear from my doc that a simple brace that is covered by state aid will likely straighten him right out in a short time with no long-term consequences, right? That was cathartic to write and I hope it's true. Thanks for reading this. I really do need a few more moms to tell me I must chill.

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12 years 10 months ago #19628 by ohiomommd
Hi, there. Sorry to hear about your terribly hard day.
1. I think all moms overreact sometimes. Premed moms, MD moms, all of us - we're just better at rationalizing ;-)

2. For what it's worth, I wouldn't cancel your MCAT. Maybe you can count this weekend as your relax-with-family-time, talk with your pediatrician or someone from the practice next week, and then pick up studying where you left off when you have more information.

3. It's not the same, but I wigged out during my OB rotation (!) as we awaited a fetal echocardiagram and repeat level II ultrasound. Thankfully, there were no problems with her heart, but we did pick up another correctable problem on the ultrasound that never would have happened without the benign skipped heartbeat!

Good luck

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12 years 10 months ago #19629 by Mitch
Oh, my heart goes out to you, it really does!

I don't know much about scoliosis, so I have no way of calming your nerves in respect to that condition. But I do understand what it's like to find out something is wrong with your baby, and not be able to move forward....my youngest at age two was 'red-flagged' for autism (we just thought he had a speech delay), and I know exactly how you are feeling now. My world collapsed on the spot, I thought I should quit school immediately so I could work on his therapy with him, maybe work at night to help pay for it all, I felt horribly guilty about that Diet Coke I drank while pregnant; about the books I hadn't read to him; about being a less than perfect mother; and about wanting to go to med school, and on and on and on. I didn't know what to do, or which way to turn. I dropped all my contract work immediately, thinking I needed to in order to focus on him.
My advice to you at this point is not to make any huge decision right now. I quit all my contract work reflexively; with all the clarity of hindsight, I wish I hadn't. My point is that you don't have the info you need to make informed, rational choices right now. Your emotions are understandably running very high, and you may jump to a conclusion faster than you might in a few days' or weeks' time. Don't cancel the MCAT....you truly may regret it. Start by breathing, very slowly and deliberately. Don't try and overthink it right now. Give yourself permission to be horrified, upset, grief-stricken,....whatever feelings happen for you.
I don't think you are over-reacting. None of us want our children to have ANY extra challenges in the best of circumstances. This is a really big deal. But trust yourself to cope. Talk to anyone who will listen, do whatever you need to do to help yourself. Don't judge yourself. But don't make huge decisions right now.
Sending a big virtual hug to you! :grouphug:

Live, Love, Laugh

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12 years 10 months ago #19630 by star
I am sorry you are going through such a difficult time right now. My younger brother has scoliosis. I don't know what the angle of the curvature of his spine was, but I can tell you what happened... He had to wear a back brace at night for a few years beginning about the time they caught the scoliosis (probably around 2 or 3 years of age). He also has syringomyelia, which complicates things. Anyway, at 16 he had a rod placed in his back to correct the curve. He can't play any contact sports, but otherwise leads a normal life. I hope you find out soon what you should expect in the coming years. Best of luck!

Star

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12 years 10 months ago #19631 by doctormom
You have a lot going on these days! Please try to be gentle with yourself. I know how easy it is to wig out when there is anything to do with our children. (I've wigged out many times!!) Good news is that your son is not in imminent danger. Sounds like he has no pain and is leading a happy life. It's great that you caught it at all...most parents wouldn't notice!

I've seen a lot of people with scoliosis and have it myself. The x-rays always look worse than the real thing. I saw my own films and was CONVINCED that they were someone elses since my back didn't look that curved to me!! The severity of involvement does not necessarily equate with severity of pain or dysfunction. Time with tell what level of intervention he needs, if any.

Also, just so you known, the US Preventative Health Task Force recommends not routinely screening adolescent kids for scoliosis since interventions to treat curves may not significantly improve back pain or quality of life for adolescents with idiopathic scolisis. That's not to say it shouldn't be treated in younger kids, or that it shouldn't be treated in older kids with severe cuurves. But, it does tell me that it is COMMON and does not always equal bad news.

Hang in there. You will get through this.

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12 years 10 months ago #19632 by DO1day
Thank you so much for the replies everyone! I truly needed to hear each of them. It was a long wait last weekend and then I was able to have the reports faxed to me on Monday. The phrases "marked thoracic scoliosis" and "moderate rotational deformity" still make me a little fearful without an angle of curvature number to correlate with my research, but I'm hanging in there. I've spent some time second-guessing catching it quickly enough, but right now it is barely noticeable despite its apparent marked and moderate nature so all that I know to do is pray and forge ahead. His ortho consult is not until the second week in February so I'm going to pick up his films from the radiologist and have another look myself.

It did feel like my world was crashing in around me but I am relaxing and dealing. My husband and I actually discussed whether or not we should try to carry him everywhere so we didn't put anymore strain on his spine until we know how bad it is and how we are going to treat it. We both looked at him happily chasing his brother and realized instantly that wasn't even remotely possible. I can't protect him from everything (I say this now but I have a feeling I'll be learning this one over and over). He was born on Christmas morning, so we really do see him as a gift from God on many levels. God will use this to make us all stronger somehow.

I did read something similar doctormom, and also that bracing is unlikely to actually fix the curve, but may prevent it from progressing. My brother is a doc and he (*finally* emailed me back) helped allay some of my concerns too. I really appreciate it guys...thank you!

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