8 year old son

[Celia]

Wendy,

I don't have any personal experience with juvenile scoliosis, my daughter has infantile idiopathic scoliosis - she is now 5 years old. One thing I do know is that spinal growth for the juvenile period is slow and stable, so your doctor's recommendation to wait a few months is not unreasonable - however 6 months is a bit of a stretch ! Looking at the Cobb angle in isolation is not very prudent - for instance there's a family history on your side of scoliosis and even though you were never treated, your curve sounds moderate/significant Has your doctor told you what the RVAD number is ? Studies have shown that an RVAD of greater than 10 generally progresses. I would find out if the RVAD is increasing or decreasing over time. Juvenile scoliosis has the potential to progress to severe rigid deformities if left untreated - it can impact on cardio pulmonary function. If your son's curve progresses to 20 degrees, I would brace immediately ! If you wait until the curve is 30 degrees, the chances of surgery is almost 100 % with conventional rigid braces and there will be little hope for him during the adolescent growth spurt. I know this post sounds gloomy and dire, but it's best to know these things in advance so that you can take appropriate action.

[mariaf]

Hi Celia,

I'm just curious where the 100% failure rate comes from in curves of 30 degrees. I am not a big fan of the success of rigid braces myself - but I did not think the numbers were quite that bad. There are certainly some kids who are braced for moderate curves and are able to avoid fusion - even if a higher number do end up needing surgery. I know you read a lot and keep up on studies and things, so I was hoping to find out where you saw this.

Like you said, the more we know the better off we all are!!

Thanks,

[Celia]

Hi Maria,

It was the following presentations at 10:15 to 10:24 a.m. on PHV in the 40th annual SRS meeting. The numbers were more like 90% failure rate for curves over 30 degrees *despite* rigid bracing during the adolescent growth spurt.

http://www.istreamplanet.com/srs/def...&conf=3&edi=12

[mariaf]

Hi Celia,

Thanks - I will check it out. I guess what you said suprised me because usually the first thing most doctors will do for a moderate (30ish) curve is prescribe full time bracing. Just doesn't seem to make much sense to me ???? Maybe I am missing something...

[Celia]

Maria,

I think it's the peak height velocity period that's worrisome and that's when all the trouble happens. With the exception of Deirdre's two amazing orthos, I find most orthopaedic surgeons an enigma

[cherylplinder]

The data on bracing is not very encouraging for larger curves.

I just don't get what the "controversy" is for Spinecor. I have no idea if this brace will work for Rachel, but the data appears to be as good or better than the data on traditional bracing.

I understand that Spinecor does not work for all curves, but please tell me- what brace does?

Why are smaller curves not addressed with Spinecor before they have a chance to progress to the category of "high risk of progression to surgery"?

That would appear to be a logical standard of treatment to me.

Maybe I am missing something.

[Celia]

Cheryl,

I totally agree with you !! When there is evidence of documented progression or clinical examination/history points to risk of progression then why not the Spinecor brace What is in the patient's best interest ????? Is it to have a fused back/pain/deformity for the rest of their natural lives ? I've heard/read of far too many orthos waiting to take action once the curve progresses beyond 30 degrees ! What is the point ?? Let's face it regardless of the surgeon's skill or expertise, spinal fusion/surgery is far from ideal. Given a choice between timely effective treatment or surgery -ALL patients would choose timely effective treatment ! I know Deirdre would have been in the very best surgical hands with Dr. Hedden and we were literally at surgery's door.... I'm so thankful we were given an alternative. If feels surreal looking back at this point in our lives because the outcome is so drastically different from the norm.

[gerbo]

I am wondering if perhaps he meant a 20% chance in the next six months.

no, i am quite sure he meaned 20 % chance that it will significantly progress at any time

with that percentage in mind, and considering he won't be growing rapidly at this stage (which is the risky time) i think you should relax for now and only if it starts moving rapidly towards 20-25 degree i would seriously consider your bracing options.

In the mean time, i'd make sure I'd keep his backmuscles active and strong, not much beats swimming in that respect, which is fun anyway.

gerbo

[cherylplinder]

Note the words "toward." When Rachel's curve started to progress, it was 15 degrees in 6 months for a total of 20 in 12 months.

[wendy]

Great news!

So we just went back for our 6 month follow up. My son's scoliosis had DECREASED to 5 % which is really nothing. We looked at the x-rays and it was remarkable. 6 months ago there was a definite curve now there is just a little nudge to his spine. The visual curve to his spine is insignificant. Is this common? The doctor will see him one more time in eight months to make sure nothing has happened...will only xray if the visual looks worse. Unbelievable!

[The Professor]

Remission of scoliosis

So we just went back for our 6 month follow up. My son's scoliosis had DECREASED to 5 % which is really nothing. We looked at the x-rays and it was remarkable. 6 months ago there was a definite curve now there is just a little nudge to his spine. The visual curve to his spine is insignificant. Is this common? The doctor will see him one more time in eight months to make sure nothing has happened...will only xray if the visual looks worse. Unbelievable!

There are documented cases of this occurring. It's still not known why some curves resolve, some remain stable, and yet others progress.

[gerbo]

6 months ago there was a definite curve now there is just a little nudge to his spine. The visual curve to his spine is insignificant.

that is fantastic, you must feel so relieved!! Congratulations!

[cherylplinder]

I am so happy for you!
Hugs!

[Jacque's Mom]

Chart of daughter's degrees

Wendy, Great news about your son! I kept notes of Jacqueline's checkups, so I thought I'd post them. She is 19 and doing very well. She keeps herself extremely fit (was on a dance team all through high school and now in college). I believe (although exercise isn't a cure), that this certainly helps. Continued good luck! LYNN

DATE UPPER LOWER
1/28/98 17 13
5/12/98 20 15
9/14/98 14 13
1/15/99 20 20
5/25/99 18 15
11/29/99 15 straight
June, 00 18 14
12/11/00 27
4/9/01 21
3/25/02 20 20
6/03 return in one year - excellent progress!
6/04 18 12
8/05 no x-rays taken – no further checkups

[thesenator]

Hi Wendy and all!

It's indeed a great feeling for a parent to hear such great news about a child's recovery. You're blessed, Wendy, and your son as well!

I wonder how your son behaved and did his usual daily routine during the past 6 months. Did he take any swimming or any other type of physical activity that may strengthen/support the back muscles? Or did you both do anything together different from before he was diagnosed with the disorder?

I myself confirmed my fear in last Friday's xray of my 8yr old sweet Angelica. She has levoscoliosis with a Cobb angle of 15 degrees together with considerable back pains specially when she wakes up each morning for school.

Wasn't satisfied with our first visit with an orthopedic as he suggested that we simply come back after 6 months and check on any progression. No braces nor surgery as of now he says.

Asked if there's any management or preventive measure (from progression) I can take for my child. He replied in the negative. Such an uneventful visit. She was simply prescribed an analgesic which she may take frequently as the pain comes each morning. I fear addiction on medications. Got to look for other measures, I guess.

I'd rather do something for her during the next 6 months on any possible measures to prevent further progression as compared to simply sit down and wait; and administer her analgesics when I see her grimace (not a pretty site for me).

Am seeking a second opinion this week with a pediatric orthopedic. I love my little girl so much I'm gonna go anywhere to get the solution.

It's great to see such a very supportive group here.

Best wishes to all!

Alrey
[single-dad to sweet Angelica]
Manila, Philippines

So we just went back for our 6 month follow up. My son's scoliosis had DECREASED to 5 %...Unbelievable!