New with questions in NC

[MATJESNIC]

Mary Ellen,

Take a deep breath. There is not much in your control when it comes to scoliosis. Sure there are some decisions you can make regarding bracing and such, but in the end, whatever is going to be, will just be. If your son gets to the point of needing surgery (which I pray that he doesn't), then you will get through that, as well. You will research a few doctors/hospitals and then make a decision.

We think we have so much we have to decide for our kids when unfortunately so much of it is decided for us. You are only human. You make the best decisions for your son that you can make knowing the limited information that you are supposed to know. Don't expect any more from yourself than that. That is when you start to drive yourself crazy.

You have all of us here for support. We are all worried, loving Parents who are trying to control scoliosis, too. We are all getting through this together. You are not alone.

[jillw]

Mary Ellen, The way you articulated your feelings, you could have been speaking for me. Some people say to let up on the research because it will just drive me crazy - I can see their point because as you point out it brings up all these potential negative outcomes. It got to the point where I felt guilty about all the time I am spending reading research, on the boards, making phone calls, etc.

But as you point out, some options are available for a limited population and I don't want to miss out due to ignorance only to find out later. And finally I've come to the self realization that this is how I work.... I need to know right now all the terrible things that might happens...so that if they do happen, my mourning period has already taken place and I can be stronger and more positive for my daughter...but also because I am the kind of person who has a very hard time letting bygones being bygones...if I missed out on a potential treatment because I didn't do everything in my power to research and after it was too late found out we could have tried something different, I would kill myself (not literally!) Where if we make the best decision we can with as much knowledge (even though there are so few certainties with this condition) I can at least say we tried our best.

Right now we have been told to watch and wait with Katie by two different specialists. I would love to put my head in the sand and do that, except I see too many people who waited and then had big jumps so I think we should maybe try something like Spinecor becuase doing something is better than waiting (even though my daughter may end up being braced for many additional years since we'd be starting earlier). On the other hand, reading about some spinecor patient's compensatory curves increasing concerns me - because its one thing if spinecor doesn't work for her, but its another if I take a somewhat mild curve and do harm! How are we to make these decisions without having a crystal ball? Oh well....

[jillw]

Melissa, I see you and I posted at the same time. You have good words - it is so frustrating that so much of this may be decided for us (as you point out). The thought of putting our children through bracing for years and years when it might not make a difference to the outcome anyway is one of the things I struggle with.

I hope Nicole is continuing to feel better! I'm glad to hear that you feel you have the "old Nicole" back. I have been following your story and praying for her.

Jill

[anwmom]

It took us a while to get the point where I was ready (or thought we needed) to get my daughter counseling. I totally understand your whole point on the research, making decisions, appointments, etc. Somedays I think I am doing all the right things and then the next day I am doubting myself and worry about what the future holds. Lately, I have been so exhausted that by 8:00 I am ready to call it a night.

Anyway, feel free to e-mail me anytime if you need a shoulder to lean on.

[WNCmom]

Melissa--

You are so right about us not having the final say in all this. In a way, I think this is what our pediatric orthopaedist has been trying to tell us. It must be tricky trying not to raise false hopes. However, we press on, doing our best to leave no stone unturned. The support of you and all the others on this forum is priceless. And above all, breathing is important.

Jill, my son will be getting a Spinecor brace in a week. We haven't a clue whether it will do any good or if it will be thousands of dollars down the drain. But at least we'll know we tried; a Boston brace for six months wasn't working, and my son was very compliant! I understand how hard it is to watch and wait. We just couldn't stay with the rigid brace and not try something different. It still feels like a bit of a crapshoot.

anwmom: Thanks for the offer. You know, at this point I wonder if my son isn't doing better than I am! At age 12, he is just beginning to be aware of his appearance (he's a dreamy, messy kid who would go naked if we'd let him; up until now he's cared absolutely nothing about clothes) and that was a blessing with the Boston brace. He also goes to a very small school and the other kids were curious, but very accepting (one even called his brace a "bully-proof vest"!. He's looking forward to the Spinecor because it won't be as noticable under clothing and he won't have to take it off for phys ed. I know it's hard for him to think about possible surgery, so I don't think he does, much.

Has anyone out there had any experience with the Egoscue Method (a set of yoga-like stretches and exercises) of body alignment? My husband is interested in it for our son (he has a few books by Pete Egoscue) if it is not contraindicated with the Spinecor.

Mary Ellen