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BecsMom
05-03-2009, 10:56 PM
My 12 year old is in the wait and see phase and due to be re-checked in June for a 40 degree thoracic curve; no brace. Is it dangerous to let her do normal activities? What about wakeboarding, snowboarding, high jump for PE.... things like that. And she is talking about trying out for cheer next year, is that safe? She also has some joint issues, the dr is watching and worried about possible marfans so that is another reason why I am concerned about her activities. He said no heavy backpack, no laptop at school. But he is very cautious and I don't want to overlimit her but at the same time I don't want to do any damage.

The Slice
05-04-2009, 03:13 AM
Well, I'm no doctor by any stretch of the imagination, but what I've read, the studies have shown that carrying book bags, pocketbooks, etc, have nothing to do with causing scoliosis. If your daughter may have Marfan's syndrome, this could definitely explain the scoliosis. My suggestion to you is that you get a second opinion from a specialist in scoliosis, or Marfan's syndrome. From what I understand, in a typical case of scoliosis physical activity is usually encouraged to keep the spine flexible, and the muscles in shape. This can definitely have a positive effect if it comes to bracing or surgery. However, if there is the possibility that she does have Marfan's, you need to find out as it is basically a connective tissue disorder and adds another element into the whole picture. While you don't have to protect her like a "raw egg", some caution is warranted until you have an answer on the Marfan's. If she does, you can take it from there as to what limitations she may have if any. I believe that if you do a Google search, you can find not only more information on Marfan's, but stories from people who have dealt with it. Again, from what I understand (not from personal experience) most people with Marfan's lead a perfectly normal life. Knowing that they have it is half the battle as it can be managed pro-actively rather than reactively. Good luck to you both, and remember that this may have some limiting factors, but does not have to disable her.

Pooka1
05-04-2009, 07:09 AM
However, if there is the possibility that she does have Marfan's, you need to find out as it is basically a connective tissue disorder and adds another element into the whole picture.

It's not always possible to find out immediately... emergent Marfan's can occur at any age.

If the kid doesn't meet the criteria now, there is no guarantee they won't meet it later if they have a certain number of characteristics now.

And unfortunately, the genetic test catches only 70-90% of the cases. That is, if the test is positive, you have it but if it is negative, you might still have it. So a rational course would be just to do the routine heart/aorta imaging regularly and not get the genetic test.

susanna(h)
06-03-2009, 09:21 AM
First off I just had this conversation with my daughter's ortho - she wanted to add an acro/tumbling class to her dance class regime and he told me he encourages dancing, tumbling, swimming, etc. (these were asked about b/c my daughter participates in them) He told me other then wrestling and football, he did not discourage any activities. As far as the school bag goes, he said the same thing but my daughter has started using an ergonomic school bag with a lumbar support and she has showed some improvement. Now one may not have anything to do with the other but just passing it along.