6 1/2 yrs old diagnosed

[mylttlebug]

I'm new here and my daughter was just diagnosed last week. She goes for her MRI on monday and then hopefully into a brace soon. I guess as soon as they can from what I here they are pretty booked in ortho. If anybody has any advice it would be greatly accepted. Thanks a ton.

[mariaf]

Welcome Mylttlebug,

You'll get lots of info and support here. Most of us have been in your shoes before.

Do you know your daughter's degree of curvature?

My only advice, not knowing much about your situation, would be to make sure your daughter is seeing a pediatric orthopedic surgeon who SPECIALIZES in scoliosis.

Ideally, she should see someone who is familiar with scoliosis in a child so young. Many orthos treat a lot of teenagers and the more typical scoli cases. Scoliosis in a 6-year old child is relatively rare and you need to be sure her doctor is experienced with kids this young.

Please feel free to ask anything - and good luck!

Keep us posted.

[mylttlebug]

Thanks a ton. Her degree is 28*. And I have done a ton of research on braces and treatment and have talked to people who have taken a less medical approach to treatment with great results and cures. We are putting her in a SpineCor brace and are doing Yoga and chiropractic and massage therapy. Plus she will have to do PT once she is in a brace. Thep Ortho specialist wanted to wait to see her again in 3 months and that is too long for me. There is one weird thing though which has a few questioning if it IS scoliosis. When she bends over she has her hump but her spine straghtens right out as if there was nothing wrong. Any thoughts?

[mariaf]

I have done a ton of research on braces and treatment and have talked to people who have taken a less medical approach to treatment with great results and cures.

Hi again Mylttlebug,

I hope you don't mind my saying so, and I am NOT questioning your parenting or anything like that - not at all - but if it were my child I would NOT take a "less medical approach" to scoliosis in any child, let alone a 6-year old child. A "medical" approach is exactly what is needed!

You also use the word "cures" - if anyone tells you that a chiropractor, yoga instructor or ANYONE else "cured" their kid's scoliosis I would run the other way as scoliosis cannot be "cured".

Please consider taking your daughter to a PEDIATRIC orthopedic surgeon. If you are not happy with the approach of the first such specialist you saw, then please go for a second, or even a third opinion. If you are close to a Shriners Hospital, that might be a good place for another opinion. They are staffed by top doctors and see many of the less common scoli cases such as scoli in a child your daughter's age.

As far as the spine itself appearing straigther when she bends over that is not unusual. If her curve is 28 degrees on the x-ray then I'm afraid it IS scoliosis. The good news is it CAN be treated and there are many, many options open to you.

I hope you don't mind my candor - I only have your daughter's interests at heart, as I'm sure you do. My son was diagnosed nearly 8 years ago and I have tried during that time to learn as much as I can about scoliosis, PARTICULARLY as it effects younger kids.

Good luck!!

[mylttlebug]

I have gotten many opinions frome the docs. ANd I also have talked to people that have and have had scoli. and I believe in my heart of hearts that it can be cured. Studies have been done and people have had sucess. And if needed I would travel to the ends of the earth for her I would. If it came down to it and she needed surgery I wouldn't hesitate. But with it being caught so early there is a good chance for improvement ( in what I've seen and heard). That's is why I don't feel waiting 3 months would be a good idea.All I have seen frome the "medical" side of thing is moniter...brace...surgery. There are not many willing to even think or look for other options and that is what I'm seeking out. She's 6 1/2 and doesnt need to be concerned with worrying about if she can play or should she not climb that tree. That is one of the reasons we are going with the SpineCor brace. And I have talked with a doc in Chicago that has had sucess with it also.I'm not saying it and end all, cure all but it's worth a shot. It may or may not work for her but we won't know unless we try. There is a director at her school that her daughter just had surgery at 15. And she said it is a helllasious thing to go through. If there is something I can do to prevent that from happening to her then I will exaust all paths trying to do so. But until then all I can do is pray and take everyday as it comes.
www.scoliosisspecialists.com

[mariaf]

There is a director at her school that her daughter just had surgery at 15. And she said it is a helllasious thing to go through. If there is something I can do to prevent that from happening to her then I will exaust all paths trying to do so.

I agree 100% that the goal should be to avoid fusion surgery.

Again, I wish your daughter all the best.

[debbei]

...I believe in my heart of hearts that it can be cured.

I wish your daughter the best. However, she will always have scoliosis, even if she gets some correction with a brace. This is a condition that she will have for life. I'm not saying that she can't have a perfectly normal life, but she WILL have scoliosis.

Good luck to you. I have a follow up appointment for my 9 year old daughter on Monday. I hope and pray that her scoliosis stays minimal and she doesn't follow in my footsteps. If the Dr. says she needs a brace though, she'll get a brace.

Let us know what happens.

[mylttlebug]

We don't get to find out when our daughter can get a brace until after her MRI on monday. Then I'm hoping to get it ASAP. If I can't get it from here though we will go to Chicago for the weekend and have her fitted.I would like to have it right after her MRI. We do have one of the best hospitals in the country for kids so at least we have that on our side.

[mylttlebug]

I am doing some research on the shriners right now. Thank you for the link. Just doing a little background checking before we jump into anything. I think the closest one is in OH. Just a few hours away. Another weekend trip I don't mind those at all. Thanks again

[mariaf]

There is a Shriners Hospital in Cincinnati but it is a burn center. Out of the 22 Shriners hospitals, 3 specialize in burns, the rest treat orthopedic conditions. I know there is an excellent Shriners Hospital in Chicago - or maybe another one is closer for you. By the way, they will help with transportation, etc. should you need it.

Good luck and keep us posted!

[Carmell]

Good luck with the MRI on Monday. The results (hopefully negative for everything) will help you know how to proceed with treatment for scoliosis. It's probably a good idea not to do any chiropractic treatments or big stretching until after the MRI. If there is a problem with the spinal cord, you don't want to cause any further damage to the nerves and tissues. Just be careful until you know the results. Another suggestion is to have the MRI scan (a full spine MRI, hopefully, not just lumbar) read by a PEDIATRIC neuroSURGEON, not just a radiologist.

[txmarinemom]

I have gotten many opinions frome the docs. ANd I also have talked to people that have and have had scoli. and I believe in my heart of hearts that it can be cured. Studies have been done and people have had sucess.

mylttlebug,

As Maria mentioned earlier, it's critical to see a pediatric scoliosis specialist. You said you're near a top children's hospital, but do they have a group who specializes in pediatric scoliosis? As dangerous as the quacks, in my opinion, are the orthos who will treat a kid for this even though they're far over their head.

Anyone (including a doctor) who tells you they can cure scoliosis or they "had" scoliosis is either dishonest or *wrong*. Correction of scoliosis - to any degree, by any method (including fusion) - doesn't "cure" it. Yes, you can certainly live a normal life with it, but if you have it, you'll always have it. Period.

Would you mind posting the studies to which you refer?

I hope you're never faced with the decision to operate, but it's concerning to hear anyone looking for a "less medical" treatment. I've seen far too many of those people (who choose non-traditional treatments) left with very few options if (and it's usually *when*) those treatments fail.

Best wishes to you and your family.

Regards,
Pam

[mylttlebug]

I think everyone is misunderstanding me. I know that she will always have scoliosis. Always. But there have been studies, rare yes, but to have almost 100% correction. I will go through my folders and try to find the links to what I have found. Yes they are doing a full spine MRI. And I will look into making sure her Dr.'2 are specialist in Ped. Scoli. We are going to MOTTS at the
Uof M.

[Pooka1]

I think everyone is misunderstanding me. I know that she will always have scoliosis. Always. But there have been studies, rare yes, but to have almost 100% correction. I will go through my folders and try to find the links to what I have found. Yes they are doing a full spine MRI. And I will look into making sure her Dr.'2 are specialist in Ped. Scoli. We are going to MOTTS at the
Uof M.

There have been surgical fusions that bring the spine back to near straightness but it isn't obvious that that is correlated with less pain or less complications down the road. It might be just surgical grandstanding and I say that as a parent whose kid was corrected from 58 to 5 degrees. There is no evidence that her eventual outcome will be any different had she only been correct down to 10 or 15 degrees and the more correction, the more chance of a complication I think.

[jillw]

Mylttlebug,

Hi, a year ago we were in a similar situation when my then almost 7 year old was diagnosed with scoli. You can see my daughter's specifics in the signature, below. We saw numerous pediatric orthopedists and many said to wait 6 months and then continue to wait until she progressed. I can understand your desire to try and take other actions rather than simply waiting. Especially since there is close to a decade of growth left which can contribute to further progression of the curve.
That was a choice we made as well. I don't know if it will help (although I certainly hope it will!), but as long as it does no harm and we go in with our eyes open, it's worth a shot. When you are at the stage when they are telling you to wait, it's easier to make a choice to use "alternate treatments" such as spinecor and try physical therapy than when the spine specialists are recommending a particular brace or treatment that you don't want to use. If we had waited - doing nothing- and then she had a big jump in the size of her curve (which I have seen happen with some of the children on these boards) I would always regret that we had done nothing. With spinecor and a little pilates which helps her strengthen her core muscles, maybe we are helping...she may still have a large jump in her curve. If so, we'll have to reevaluate what to do going forward. In the short term, though, it was an easy decision. Even if spinecor only delays the progression, at least it buys my daughter a little more time to run around without the restrictions of a hard brace. I figure the $ spent on pilates helps her with her dance anyway as it strengthens core muscles so even if it does nothing for scoli, it's not bad (and she's not doing intense pilates, it's really more to improve her proprioceptive awareness which has always been a weak point of hers aside from scoli). And the $ on spinecor has been worth it in my opinion because for the last year she has been walking around with a reduced curve while in brace. That doesn't mean her curve is "fixed", but at least the "erosion" and/or effects of gravity on a curved spine over time were lessened over the past year. Plus, I've had more time to research more options for potential future treatment. Still, I enter all of this with very realistic expectations and realize we may have to change my daughter's treatment over time (or heck, even next month when she gets her next xray)

I do think the important thing is to make sure to do no harm. As Carmell pointed out, it would make sense to get the results of the MRI before engaging in chiro and such. I haven't researched the use of chiro in kids, so I don't know anything about the potential risks, but I'm sure you have.

Anyway, I guess I rambled, but wanted to say Welcome, Good luck, I remember how I felt a year ago when we were in your shoes-it's a tough tough time, but you will all get through it.

Also, Pam brings up a very good point, that "as dangerous as the quacks, in my opinion, are the orthos who will treat a kid for this even though they're far over their head." In hindsight, I am SO grateful that the first orthopedic surgeon we saw (the one who diagnosed her scoliosis) was confident enough in his abilities to admit that he was NOT the one who should be treating her and that we should be finding a pediatric ortho who specializes in spine and sees kids with juvenile scolio on a regular basis.
an "e