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cakebaker
09-12-2008, 10:14 PM
Hi,
I'm so glad I found this site. I've been reading and learning so much since my DD (Emma's) appt on Weds. I'll give you a little background:

Emma (who is 6) has been having back pain for appx 6-8 weeks. I took her to an Urgent Care early August for the pain and she was dx'd w/a muscle strain. She has continued to have pain (takes Motrin daily), so I took her to her ped. on Weds. They did a thorough exam and reassured me that it was probably just a strain, but wanted to do an X-ray. The doc called immediately w/the results and said we needed to see a pediaric orthopedic surgeon at Children's Hosp in Columbus, OH. I still haven't heard from Children's and am upset by this.

I tried to call the ortho office on Thurs, but was told I have to wait for them to contact me. Tonight at work (I'm a nurse), I ran into one of the pediatricians. She thought maybe she could expedite the process and spoke to the ortho on call at Childen's w/o any luck.

I've read great things hear about the Shriner's Hospitals and plan on trying to contact them Monday am. I'm trying not to be too impatient. But I want her to be seen and have an MRI ASAP.

Her X-ray report said she has 19 degrees of roto-scoliosis concave to the right focused at the mid body of L1.

Thanks for listening. And a special thanks to Maria for answering my e-mail when I wasn't able to post yet.

Sally

leahdragonfly
09-13-2008, 10:14 AM
Welcome to the site and I'm glad you found us. I understand your frustration about waiting for appt's! My daughter was diagnosed at age 6 earlier this year, and her pediatrician was willing to order an MRI for her. We got this done right away and had the results in hand when we (finally) saw the pediatric orthopedist 2 months later.

We live in Oregon, but we interested in an alternative to long-term bracing. After meeting Maria here, and subsequently some other VBS parents, we decided to travel to Shriners Philly and saw Dr Betz. He had his PA, Janet Cerrone, are truly wonderful and we are glad we made the trip.

Good luck with everything, and let us know how it goes.

cakebaker
09-13-2008, 11:48 PM
Thanks for the support.

I think the closest Shriner's Hospital for me would be in Lexington, KY. Does anyone have any experience w/them? Cincinnati Children's Hospital would also be an option. Anyone familiar with them? It's so hard to know what to do.
I think it would be a 9 hour drive to Philly.

I just want to get the ball rolling. She is having worsening back pain.

mariaf
09-14-2008, 09:33 AM
Hi again Sally,

No problem about answering your e-mail :)

I'm sorry but I don't have any personal experience with the Shriners Hospital in Lexington or with Cincinnati Children's. Like Gayle, my experience over the past five years has been with Shriners Hospital in Philadelphia and I have found them to be equally wonderful. Hopefully someone else does have experience with either Lexington Shriners or Cincinnati Children's and will post.

I don't know if it makes a difference, but Shriners will assist with travel expenses and sometimes with the travel itself (meaning they have drivers who will transport the patient and usually one parent - but I don't know if 9 hours is outside the limits they will go). They also will sometimes pay airfare for the patient and one parent. Just wanted to put that out there in case you weren't aware.

In any event, best of luck to you and please keep us posted!

cakebaker
09-14-2008, 02:34 PM
Thanks gals. I plan on having the peds office send Emma's med records to Philly tomorrow.

Gayle- I see that you are 41 and your DD is 6. I'll be 41 next month and Emma turned 6 in April.

Carmell
09-15-2008, 11:59 AM
Welcome Sally and Emma,

In addition to what the others said, I suggest when you do meet with the PEDIATRIC ortho (who specializes in treating young children with scoliosis) you ask for a full-spine MRI. Scoliosis in young children is NOT common. Back pain like you describe can be a red flag for something else, specifically a tethered spinal cord. I also strongly suggest that you get more than one opinion. Multiple opinions will help you gather as much fact about her condition than anything else. Cincinnati is a good option, so is Shriners, specifically in Philly. They successfully treat MANY children similar to Emma.

Good luck and keep us posted.

cakebaker
09-15-2008, 01:14 PM
I tried one more time to expedite an appt w/Children's Hosp in Columbus. No luck.

I called Cinci Children's and have an appt for this Weds. She's going to see an ortho surgeon there at Children's. I'm relieved she'll be seen and we can at least get an MRI doen ASAP.

I also emailed Janet Cerrone today and will fax her an application for treatment and a copy of Emma's x-ray report and wait to hear back from her. I imagine it will take some time to get an appt w/them. Hopefully, by the time they can see us, we will already have had an MRI done.

Thanks,
Sally

cakebaker
09-17-2008, 07:26 PM
Emma saw a pediatric orthopedic surgeon today. He did an exam & reviewed her x-ray and agreed it measured 19*. They also did x-rays today which measured the same. The curve is NOT at all apparent on physical exam. (Her regular pediatrician was shocked when we got the x-ray results last week because she didn't note the curve on physical exam either). And he said he was not concerned w/the curve. He asked me if I was there when the x-ray was done and if she was standing straight and still. He wants to repeat the x-ray in 3 months. He wants to do a bone scan because of her persistant pain. That is scheduled for next week. I mentioned an MRI, but he wants to start w/the bone scan first. So I guess that's the next step.

mbarnes
09-18-2008, 04:51 PM
Please act immediately to stop the progress. Do not let them give you a wait and see approach get started doing something now

Carmell
09-18-2008, 05:59 PM
Hi cakebaker,

I'm glad the ped. ortho. is willing to pursue this. A bone scan is a good idea, and waiting another 3 months isn't going to change much of anything. Hopefully the scan will give them the good information they need, and in 3 months her xray will be great! Keep us posted.

cakebaker
09-19-2008, 02:18 PM
I received a call from Janet Cerrone (from Shriner's in Philly) today. She was very nice. It was a relief to speak with her. I told her we had seen a pediatric ortho surgeon on Weds and shared his plan of care (ie- bone scan next week to assess Emma's back pain & repeat x-ray in 3 months to monitor her curve) and she thought that was an excellent way to proceed. So now, we'll just have to see what the bone scan shows on Tues.

Carmell
09-19-2008, 03:22 PM
Thanks for the update, Sally. It's comforting to get a reinforcement that your "plan" is a good one. I'm glad things are going well. Keep us posted on how things progress.

cakebaker
09-28-2008, 08:44 PM
Got the bone scan results. It was negative. Thank God! Emma's pain is improving. We'll repeat the x-ray in 3 months to monitor for progression. I will post an update then. I know it's been so helpful to me to read old posts, so maybe in the future this will be insightful for someone. Thanks to this wonderful community for all the info and support! I am so very glad I found this site.:D

bas2101
09-29-2008, 01:11 PM
Hi-

I am happy that your daughter's bone scan is negative. But, can I suggest that you demand an MRI? It can rule out many things that could contribute to scoliosis. Many doctors hold off on ordering an MRI, but it can't hurt. Furthermore, "watching and waiting" can be dangerous. You will only watch and wait for it to get worse. I am not trying to scare you, but when a curve starts that young, it will only progress.

My daughter was 7 1/2 when she was diagnosed with a 40 degree curve. She is now 13 with a curve in the 60's. We have still refused surgery and are bracing with a Cheneau brace. My daughter has had great results, her body has transformed and her curve is lower-but it may still be too late for her to avoid surgery. With the results I have seen from kids who got started young, I wish I knew what I know now.

Good Luck.

Pooka1
09-29-2008, 05:53 PM
Furthermore, "watching and waiting" can be dangerous. You will only watch and wait for it to get worse. I am not trying to scare you, but when a curve starts that young, it will only progress.

It seems you child has JIS based on her age at diagnosis. I don't know whether watching and waiting is know to be contraindicated for JIS but it is a very viable option for AIS.

Consider that orthopods who don't brace and just watch and wait aren't sued left and right for malpractice.

There is a reason they are not sued. It's because the literature does not provide enough support for bracing to say that watching and waiting is "dangerous" in the case of AIS.

My one daughter had a fast moving curve and was never braced prior to fusion. She's the lucky one in my opinion. Her twin has a curve that didn't move at all (measurably) for several months prior to getting a Charleston brace. THEN it started moving. Now I'm not saying the brace caused the curve to move. I am saying that I agree with Pam from here... some curves won't be held by any brace, some will be held by any brace, and some won't move even if you watch and wait.

That's just the way it is, unfortunately.

I wish you luck with your daughter. I wish everyone luck.

txmarinemom
10-04-2008, 03:48 AM
I'll only contribute my curve was caught at almost 10 years old, 35 ... definitely JIS (menarche didn't occur until almost 15), and I'm not an inch taller than I was at 10 ... or 14.

I never progressed in adulthood (even through two pregnancies), and held steady at 48-53.

Yes ... have her checked out by a pedi ortho ... but measure her progress to base your actions. Thankfully, there ARE other options than bracing. I didn't have that choice.

I elected surgery due to pain at 39 years old. Many have MORE pain with lesser curves, and LESS pain with 70 curves. It's so individual ...

RugbyLaura
10-04-2008, 08:03 AM
Pam,

So you had done all of your growing by 10 and were pretty tall? It seems that most progression occurs during growth. When did you progress from 35 to 48/53?

Laura

txmarinemom
10-04-2008, 03:20 PM
Pam,

So you had done all of your growing by 10 and were pretty tall? It seems that most progression occurs during growth. When did you progress from 35 to 48/53?

Laura

Only if you consider 5'2" "tall" - LOL ... okay, and maybe I grew an inch or less. Definitely not more than that.

It's debatable whether most progression occurs during growth. There's a whole generation of adults who were told they'd never progress after they stopped growing and did. Then again, you could say my curve DID progress during growth ... most of which occurred before age 10.

To answer your question, I progressed between the ages of 10-14, and I did so both IN the brace (in the absence of any real growth), and OUT of the brace.

I became non-compliant (from what I recall) about age 12-13 (when I hit Junior High): I had an early Athletics period for track, and I'd stuff my brace in my locker room locker first thing when I got to school. My parents had no idea I was out of it all day ... and I never wore it playing ball. So basically I slept in it - unless, of course, I was away from home.

Consider this: My initial thoracic Cobb of 35 could have easily been 40 with the margin of error. This potentially means I COULD have only progressed 8 from 10-14 if you use the low end of of the range for my consistently measured 48-53 curve.

BTW, In 1978, you weren't generally seen by a pediatric specialist. The same ortho who treated my scoli did my knee surgeries in '92, '94 and '96. He was by no means a scoliosis expert - so that hard number of 35 is somewhat suspect.

Anyway, I believe my case was just one of those on which bracing had no effect (other than to cause a lot of fighting around the house). It's also somewhat of an anomaly in that it was at a point my entire adult life where stats say it *should* have been progressing. I can say with absolute certainty it was not.

I'm pretty sure I've posted this before, but here's the book I received (http://www.box.net/shared/static/3zsot864gw.pdf)when diagnosed ...

Regards,
Pam

Pooka1
10-04-2008, 07:51 PM
There's a whole generation of adults who were told they'd never progress after they stopped growing and did.

Our surgeon seemed pretty insistent that the figure is only 5%.

You make it to Risser = 5, you have a 95% chance of holding that curve through life as I interpret the situation.

I did not get that impression from reading this group but of course, the posters on this group are the tiniest smidgen of an anecdote possible. It is impossible to draw any conclusion at all about the general populace from this forum.

And it may be the 5% who do move are largely the women who have children and the associated hormone load.

txmarinemom
10-05-2008, 04:57 AM
Our surgeon seemed pretty insistent that the figure is only 5%.

You make it to Risser = 5, you have a 95% chance of holding that curve through life as I interpret the situation ...

And it may be the 5% who do move are largely the women who have children and the associated hormone load.

Sharon, I have no idea of my Risser because they didn't GIVE you that figure in 1978.

I carried 2 children to term with a 50 curve and it never worsened. I did, however, have my back mapped so they could hit an epidural on the first shot (with a 2 hour labor - natural, NOT by choice - with my first kid, I was NOT doing that again).

And no one with a 50 curve has a good chance of holding that through adulthood. They're expected to progress at 1 per year.

Regards,
Pam

Pooka1
10-05-2008, 10:06 AM
And no one with a 50 curve has a good chance of holding that through adulthood. They're expected to progress at 1 per year.

Well, maybe the 5% that he refers to are largely the people above a certain angle who will progress about a degree a year even though they are at Risser = 5.

If so, then I take him to mean that if you make it to a Risser of 5 at an angle that is below some threshold then your curve will not worsen 95% of the time.

Still, if true, that means 95% of folks do not make it to that threshold and therefore stay stable for life (of the population that didn't have fusion).

cakebaker
12-11-2008, 08:02 AM
Emma had a follow-up appointment yesterday at Childrens Hosp. They did x-rays of course and they showed that her curve had actually lessened. It's now at 10*. The surgeon was very encouraged. And of course we were elated:D. We will follow up again in 6-8 months.

jillw
12-11-2008, 08:40 AM
Woo hoo! I love to hear news like this! You must be totally psyched. Thanks for keeping us updated and please keep us in the loop in the future.

cakebaker
01-20-2010, 08:00 AM
Just another update. Emma had an appt w/her pediatric ortho in Dec. Her x-rays showed no progression of her curve over the past year. We were thrilled of course!

mariaf
01-20-2010, 09:22 PM
Great news!!

I'm so happy for you :) :)