Can you see progression?

[Snoopy]

Plan is to completely avoid looking at her back for the next 6 months.

Good luck with that! It's been 4 1/2 years since Jamie's surgery, and I can honestly say I don't look at her back anymore looking for progression. However, I still get that "dreaded x-ray day feeling" whenever we get close to a follow-up appointment.

Although we've put Scoliosis behind us, there are times it just creeps back into our lives unannounced. Jamie needed the straps of her graduation dress shorten the other day and the friend doing the adjustments freaked me out! She announced that she had shortened both straps the same amount, but yet the one strap was obviously still falling off her shoulder. I felt this sinking feeling of panic in the pit of my stomach. I tried to keep my voice calm and reassuring because Jamie's face showed concern and said, "are you sure, because her shoulders were so even after surgery?" She looked at the straps again and said that yes she made a mistake, one of them wasn't shortened as much as the other. UGH! Now I'm really trying not to freak out until Jamie's next x-ray in a few weeks.

Does it ever end?

Mary Lou

[mmm2001]

Thank you guys- I appreciate the support.

I agree with you Sharon- my daughter also (thankfully) has very little rotation. Barely a rib hump. So I think that progression becomes much harder to clinically monitor. However, prognostically that is good, so I am definately not complaining. Her RVAD has also appeared not to progress, which I understand is less predictive in JIS, but still a positive from what I have read in the EXTREMELY limited literature on JIS.

[abbysmom]

First of all, congratulations on good news! I just wanted to weigh in on the "very little rotation" thing: my daughter progressed from 14 up to 22 from ages 5 to 7. We were going every 6 mos. and had been told bracing was imminent. I was SURE that I saw progression before both of her last two appointments, and (happily) she actually regressed both times. I, too, was trying to tell if one arm was touching her hip but the other wasn't. I sew and had the same experience with the straps on a jumper I was making for her. I think that part of the trouble is that we parents are always trying to assess on the sly, and that is probably not very effective. Believe me, I know that it is easier said than done, but you do have to try and put the waiting game out of your mind and live in the now. I think I had a good 18 months of depression, really (which I had never experienced before) trying to deal with Abby's diagnosis. I think I was probably not the mom she was used to, (no matter how hard I tried) until I forced myself to wait for the next xray. I hope your daughter's curve stays stable. Try to enjoy her more and worry about her less

[mmm2001]

Hi-
Just thought I would update. One year later, curve is still low 20s. (21 at last visit.) We never did brace, even though we were told to by our ortho 2.5 years ago to do a Boston 23hrs/day, 7 days a week. I am NOT telling people to be noncompliant, or saying there is anything wrong with bracing. I am just saying, get a second opinion by someone who is experienced in scoli. Our current surgeon is very experienced. He told me he thought, just looking at her rotation, that she would be OK watching for now, and he was right. If we had braced her for the last 2 years, we would have thought it was working, when in reality it just wasn't going to get worse. It bounces back and forth between 18 and 25, all within the error range.

Best wishes to everyone dealing with this. It can be tough. Again, this is not a commentary on bracing, just an update on our experience.

L

[michael1960]

L

Congratulations. Your post raises that big question for all of us whether to brace or not.

My daughter was 7 with a 23 deg curve. It was suggested that she not brace. Then 4 months later it was 23 and suggested again that she not brace. Then 4 months later it was 36.

So, here is a case in which we wish our ortho would have suggested bracing when she was at 23. She was 36 last October (2009). And through bracing and some other treatment we are trying our best to get it back down. She has been in a SpineCor brace since October 2009. And is wearing the SpineCor and Boston brace since March 2010. The 36 deg curve (T4-T12) is down to about 23 deg but she still has a T5-T10 curve of about 28-30 deg.

Unfortunately all we can conclude is that some children progress and some do not progress. It is a very hard decision to brace or not brace. You may had done years of bracing only to find out it was not necessary while in our case it may have prevented curve progression.

Of course there is always the possibility that a 20 deg curve could be reduced to 0 deg +/- 5 or 10 deg through bracing. Especially at such a young age. Another question on the table whether a 15-20 deg curve should be braced for stabilization or maybe even curve reduction.

Fortunately we are seeing with some JIS children some curve regression. My ortho told us that bracing only stabilized a curve, but did not reduce it. This may be true for AIS but not so sure for JIS. There are several cases of children being in the mid 30s reduced to low teens through bracing. This is what we are hoping for at this time.

But it still raises the issue, so what if we get it down to 10-15 deg, do we have to continue bracing for another 6-8 years to hold it. That is a long time. I think some who have reduced the curve to 10-15 deg are trying the no-bracing or night-time bracing at this point to see if that is enough to hold it. And if it continues to progress go back to full-time bracing or maybe at that point make the decision to have something like VBS.

I am sitting here today wondering whether we should continue bracing and try to get to 10-15 deg or less or just have VBS and hopefully no more bracing.

Thanks for sharing. I started to read the post not realizing it was in the past and then said I sure wish I had an update, and there it was. Thanks

Michael

[mmm2001]

Thanks Michael,
That fear of a sudden and unexpected progression is always in the back of my mind. I wish there were some factor that we could use reliably to predict who would progress and who wouldn't. I still worry about her reaching the adolescent growth spurt, but I worry less now than I used to. I just thought our story did show that JIS really is unpredictable, and there is some subset of kids out there that won't get worse. When this was all new to me I read only the horror stories, so I thought getting our story out there may be helpful to someone.

I wish you guys the very best in your decision-making, because it sure isn't easy... We need better research in JIS. I don't think it is like early AIS, which many orthos consider it to be. I think that it is it's own entity with different outcomes and different responses to bracing, as you said.

L.

[Anna's mom]

Christine2,
Hi, I'm new here and was noticing your daughter's numbers. I was told that a brace would only prevent progression and not correct the curve, but the numbers I see for your daughter are getting better. Please comment as my daughter's scoliosis is progressing and we have decided against a brace and are pursuing the exercise and torso rotation route along with a melatonin supplement each night. Don't want to go against our ortho's rec for a brace if it might be beneficial.
Thanks!

Anna's mom
Daughter dx'd 3/10

[mmm2001]

Hi Anna's Mom-
It has been a while since I posted. My daughter is now 9 years old. Just went to the ortho about a month ago. She remains in the lower 20s. Her rib hump may be a little worse, that's about it. We see him every 6 months.

Obviously I am glad I did not brace because if I had, I would have thought it was working, and therefore would have continued it. She is still prepubertal and of course the adolescent growth spurt may cause her curve to progress, although I am very hopeful.

We did not do any specific exercises although I will say that she is in 5 sports and can easily do 50 push-ups (like a boy, she points out), so she does work her core quite a bit.

There is no convincing evidence that exercise changes the outcome of scoli. To me, there also was not enough good evidence that bracing did either (at least not for how onerous the treatment was), so we took a chance. I would never advocate that anyone else take that chance. The truth is I could have been wrong and she may have progressed quickly and then I would have felt guilty.

We went to a very experienced pediatric spine specialist that I trusted, and he was OK with my plan. That helped, although I knew up front he could have been wrong, too.

I wish you the very best of luck. Sorry for the long post...

Lisa

[mmm2001]

Well, I finally got the answer to my question- No. At least not in our case. My daughter's curve was completely stable for all of those years, then got 10 degrees worse in 6 mos. She is 10 now. She actually is still very prepubertal and did not have a growth spurt, so I don't know what happened. Anyway, I admittedly didn't look at her back much, but I really did not see any huge change that would have suggested it got so much worse. I will say her shoulders looked uneven in pictures, but that wasn't really new. Just wanted to follow-up my original post.

[Resilience]

Sorry to hear of your daughter's progression. Scoli really is so unpredictable.

At least you avoided bracing for a few years. Thanks for posting.

Best Wishes to you and your family.

[leahdragonfly]

Hi there,

I too am sorry to hear that she progressed. My 7 y/o son was diagnosed a few months ago with a curve just under 20 degrees, so we are very much in the watch and see position with him, also.

If you don't mind my asking, will your daughter now need treatment for her curve? I imagine your docs are seriously recommending something at this point.

Take care,