Emotions while waiting

[apheath]

Spinecor Brace

Hi MontanaMom,

I have had Scoliosis practically my entire life, or at least since I was 2.

I just thought I would email you and let you know about some of the stuff I have tried that has worked wonders. I have 3 curves, all 20 degrees, looks like quite the highway when you see the xrays .

My mom and dad spent years taking me from doctor to doctor, and the only thing that has ever worked is Yoga. I know that sounds weird. But I promise you, at 26 years old and having been in pain for most of my life, that I can honestly say I am pretty much pain free today.

Yoga is great cause it's all about alignment and teaching your body and your own muscles to correct yourself. when I started yoga 6 months ago my hips were completely skew, my rib cage was turned terribly and I had the nasty back hump, add the pain and it was not pretty. It's taken 6 months but my hips and rib cage are straight. I still have a slight hump, but that comes with the turf. The pain is gone though and when I do get sore now and again, I know what to do.

When you have Scoliosis no one seems to know what caused it and how to help, which makes it a horrible lonely road. I remember crying for hours cause no one seemed able to do anything, and my poor parents were worse.

The other thing I would recommend, is looking into the Spinecor brace. It's not like the normal braces which can do more harm than good at the end of the day so be careful with them. The Spinecor brace has been around while and can not only stop the progression on curves but it has actually been able to reduce some if the spine is young enough.

So basically the Spinecor with Yoga and your daughter could actually correct things .Oh and the other thing, everyone will tell you not to see a chiropractor, but do yourself and your daughter a favour and go see one that knows his stuff and is gentle. It wasn't until I saw a chiro that I actually found out about yoga and all the rest.

Let me know if you want any info on this stuff.

AP

[Pooka1]

By what I wrote last time, I just meant that some kids don't need to express their feelings about the scoliosis because they just want to deal with it and get it over with so they can move on to the more important parts of their lives, such as friends, school, etc. They might just want to not talk about it, and not need therapy,(snip)

This certainly describes both my kids then and now.

My first kid just appeared brave but I'm sure she was scared. She was very controlled though at all points including when we left her in pre-op. I think it was the no-choice aspect.

The second kid didn't talk to us much either but I'm sure she was discussing it with her sister. So she was luckier in that regard to have that.

[jrnyc]

Hi Elaine
i sent you a private message...

best regards
jess

[laurieg6]

I totally agree that a support group would be really great if there's one near you. I also didn't want to sound self-righteous or like I knew the answers for anyone else's child. If you think therapy is necessary and would be helpful, go for it of course.

When I met adults with scoliosis, it was helpful for my son to ask them questions about their surgeries which were many years ago. We also met a couple of girls who'd had or were scheduled for recent surgeries but he was too shy of girls to talk to them about it back then. I wanted to start a support group here in Seattle but I was too busy with work and my younger son, etc. to give it the time it needed. Also my son said he had no interest in joining one or talking about his scoliosis in a group like that so I figured, since it really was his issue and not mine, I'd better not push the support group idea on him or start one then.

By what I wrote last time, I just meant that some kids don't need to express their feelings about the scoliosis because they just want to deal with it and get it over with so they can move on to the more important parts of their lives, such as friends, school, etc. They might just want to not talk about it, and not need therapy, although I'm sure many kids would find therapy to be very helpful.

[jrnyc]

Hi Elaine
if there are others, especially girls, in the same situation, that your daughter could talk to, that would be very helpful, a kind of group therapy, but an unofficial, informal one...in person would be best, but that doesnt sound realistic...so on the internet would be good..if they got to know each other, maybe they could exchange phone numbers....arent there some scoli sites for kids out there on line...?

i think it is much better to acknowledge the worry & stress a kid may be under rather than not to....yes, she may talk to you, but kids are funny about that, & she may want a neutral person, or even better, a girl her own age to bond with, even commiserate with....

i dont know..you know your daughter, & you could guess whether or not she would feel more "different" if you suggest counseling...as i wrote before, i would hope you both could go together to a medical professional to discuss options for her scoliosis...if she becomes aware of possibilities, i think she will be better able to cope with what comes..."forewarned is forearmed" kinda thing...

best of luck
jess

[laurieg6]

All through the years my son wore a brace, as well as the few months before his surgery when he finally was told he could stop wearing his brace, I thought about getting him therapy. But I didn't, I guess because he always did well in school and behaved fine at school and at home. I always made sure to ask him about his feelings and to let him know that if he didn't want to talk about things with me or my husband, but had things he needed to say, I'd find him someone else he could open up to. I have both personal and professional experience with therapy so I know how important and useful it can be. I knew my son already felt different so I didn't want to push counseling on him unless he really wanted or needed it. Otherwise, my reasoning was that it could just be one more way to pathologize him and make him feel in need of extra help. (We went to many types of appointments with many types of practitioners to try to "fix" or stop the progression of the scoliosis prior to the need for surgery.)

So I would only get her counseling if you feel she really has no one else she can talk to and really needs to talk. You can try to get her to talk to you but maybe she's still just processing all of it in her own way and trying to live her regular life without thinking about it too much. My son hardly ever complained and rarely wanted to talk about his feelings (although maybe a girl might want to talk about her feelings more?) I know I had way more emotions to deal with because I tend to worry a lot and also because of my ability to empathize and see more into the future possible ramifications of everything related to scoliosis.

Another thought I had is that you could get her one or more of the books that are out there about kids (girls for the most part) with scoliosis and how they dealt with it. There are several really good ones, including one by Judy Blume. Reading a book about someone else with it might be a safer way for her to explore her feelings and talk about them.

Sorry for rambling. I hope something I said may be helpful?

[jrnyc]

Hi Montanamom
perhaps a therapist would be a good thing to try? a neutral adult to explore fears & worries with?

or would it be more realistic for her to talk with the orthopedist or doctor's assistant as to possible options for her to pursue...maybe if you went for such a consult together?

i just think it is good for a child or teen to have someone to talk to about things they might be keeping inside...things that are worrying them...

could it hurt to try?

best regards
jess

[bracegirl]

Advice from a teen...

So, I have some advice coming from someone whose been through bracing.
1. Don't let her see how concerned you are. there were points in my treatment where things didn't look so good. My parents put on a happy face for me, and didn't let me see that they were seriously concerned. I would have freaked out if I'd known they were worried! So if you do become concerned, don't let her see it.
2. What happens, happens. The most awful thing about scoliosis in my opinion, is the feeling of helplessness. There isn't a lot that can be done with scoliosis. Either bracing or other treatment helps, and surgery is avoidable, or it doesn't. There's not a lot of give. So you have to learn to accept that things are going to change, and there's nothing you can really do.
3. She is going to be an emotional roller coaster. You have to be a solid and steady emotional rock for her. She needs someone she can always go and talk to about whats going on with her back.
4. If she's braced, you have to let her take control. Even if she's not braced, she has to be in charge of her own health. One thing I had to realize for myself was that if I wanted to avoid surgery, I had to wear my brace. It was never my parents forcing me to wear my brace, and the sooner a patient realizes this, the sooner compliance becomes a non-issue. I met so many girls who would try to hide their brace under their beds from their parents. I always wondered, "Why do they have to hide it from their parents, their parents aren't going to be the ones having surgery if the brace doesn't work?" Even if she doesn't end up getting braced, she has to learn to be independant. I don't want this to come off as some sort of cruel parent, tough love approach, I just think that parents who hover too much cause more problems then they attempt to fix.
5. as far as dance, I am a huge advocate of the Schroth method of PT. and one of its big things is teaching you how to walk, sit, stand, etc. straight. I am now so in tune, that I sit perfectly straight in a way that helps my curves. so that might help her align her back properly for dance. but I don't know.

so yea, this is all kind of disjointed and random, but I hope some of it helps!

[Pooka1]

Any tips on how I can help my 15 year old daughter during this time of watching and waiting?

Both my daughters were emotionally reserved about their impending surgery. I am coming to think that is normal. All you can do is just be there to answer questions and encourage them.

For us though, the first kid's curve moved like a freight train and she understood the issues and so I don't think she was as shocked as she might have been when she heard she was in surgical territory. There was no sense that we had a choice in whether or not to have surgery. It was obvious that it was her only hope. So that may have made it easier.

And of course the other kid saw the entire process with the first kid and had a LONG time to process things. She was quiet but I think she was calmer having seen the recovery and result of the first kid. She wanted to get it over with.

Good luck. You will get through this and will flying colors.

[Dingo]

therapy

MontanaMom

The only exercise treatment that I know of that has been found to be succesful for children with Scoliosis is Torso Rotation Strength Training. This therapy was developed just a few years ago by a spine surgeon. Check out the thread, there are many links and even a video.

Torso Rotation Strength Training

As for diet Dr. Alain Moreau recently applied for a worldwide patent (Source) in which he suggests that Selenium may help.

[0024] In accordance with another aspect of the present invention, there is provided a method of preventing or reducing scoliosis comprising administering to a subject having scoliosis a therapeutically effective amount of an osteopontin inhibitor (OPN) or a selenium rich diet, whereby scoliosis is thereby prevented or treated.

[00166] Selenium concentration was reported to be significantly decreased in plasma of AIS patients (42). Selenium and more specifically Se-methylselenocystein, an organoselenium naturally occurring in diet, are used to prevent metastasis in breast cancer as chemopreventive therapy by targeting OPN transcription (43-45).

Selenium in general probably won't help, it's that specific type. Fortunately it's widely available.

Here is a credible page that lists safe intake levels for Selenium.
National Institutes of Health: Selenium

I should note that although Selenium is necessary for good health high levels may raise cholesterol levels (Source). And of course taking an unsafe level may make things worse. Chicken cooked at 350 degrees tastes great. Chicken cooked at 700 degrees doesn't taste twice as great. Always take supplements within safe limits.

[MontanaMom]

Any tips on how I can help my 15 year old daughter during this time of watching and waiting? Her curves were initially diagnosed as fairly small
(18/24) and based on her age, menses history, and x-rays, the doctor at Shriners Spokane did not recommend bracing. They did not progress when we went for our second visit, six months later. But when we went back in July her curves had dramatically increased to 30/40. We're going back in January, and I can tell my daughter is becoming very fearful. I have a gut feeling the curves are worsening. One hip is significantly higher than the other.

In addition to what I am sure all teens fear, my daughter is also realizing the impact this will have on her future as a serious dancer (ballet, modern).

I plan to put her in touch with the Spine Kids forum, but I would like some tips on how parents help their children negotiate this emotional time of watching and waiting. My daughter is very reserved, and I believe she is bottling up her emotions.

Elaine