"Amazing Disappearing Juvenile Scoliosis"

[Pooka1]

From the Hey clinic...

amazing-disappearing-juvenile-scoliosis.html (http://drlloydhey.blogspot.com/2009/02/amazing-disappearing-juvenile-scoliosis.html)

"Abigail is a young lady who was placed in a brace 3 years ago at age 7 and has decreased her curve from 40 degrees to 4! This is a perfect example of a juvenile scoliosis case, which you see in children between 5 and 7 years old, most of which will resolve as they get older. More than 90% of cases do NOT turn into idiopathic scoliosis."

Hey seems to be saying that even reductions from 40* to 4* are expected and most JIS cases resolve as kids get older.

That is not the impression I got from some of the JIS testimonials.

So even here, JIS cases that resolve cannot be assumed to be due to bracing I guess.

[Ballet Mom]

You can't prove that it wasn't the brace that helped her spine grow straight, can you? How common is it that a 40 degree curve resolves itself without help?

Aren't bracing studies fun?

[leahdragonfly]

Hi Sharon,

I am pretty confounded by Dr Hey's comments about JIS. I have combed the literature over the past 18 months since Leah was diagnosed at age 6, and have seen several top pediatric spine specialists. All told us the same thing as what I have read: basically 70% of JIS cases progress and 30% don't, and of those that do progress, 95% of those children will go on to need fusion. SRS says the same thing. So what is a parent to think??

Maybe I need some of what Dr Hey is drinking today! Just kidding, but I am truly puzzled by his comments. I wonder if he replies to e-mails...probably not.

So I am curious, this young lady Abigail, does she still have to wear her brace until she is done growing, or does he now deem her scoliosis resolved and discontinue bracing?? That's what I really want to know.

[Pooka1]

Gayle,

I hope you try to email him those questions.

He really sounds like he is coming out of left field compared to what you are being told.

He didn't seem surprised at the huge correction and I got the impression he though it was commonplace from his wording.

I don't know where you live but maybe you can get an opinion frmo him.

Or send your daughter's casework to him and ask if there is something else to try. I have no idea if he will respond.

[emarismom]

Gayle,

I have been dealing with JIS for almost 5 years and have never heard that "More than 90% of cases do NOT turn into idiopathic
scoliosis." as Dr. Hey says. In fact, like you, I have always been told quite the opposite.

He didn't mention the type of brace Abigal was using, I'd be curious to find that out.

[Pooka1]

Even though I'm in the same town as Hey, there is nothing I can do to help find this information.

Asking these questions is no excuse to show up at his clinic.

Maybe he will respond to email.

ETA: Maybe you can post a comment on the blog.

[Pooka1]

http://drlloydhey.blogspot.com/2008/02/does-scoliosis-ever-get-better-on-its.html

"Last week we saw Olivia, a delightful 5 yo young girl for follow-up for her scoliosis.
She was sent to us 4 months ago with a scoliometer reading of over 7 degrees.
Her X-Rays in our office, measured very accurately on our digital scoliosis X-Ray system showed a 28 degree scoliosis 4 months ago.
This last set of digital X-Rays taken in our office showed that her curve had decreased to 20 degrees!
Great news for Olivia and her family!
We often see scoliotic curves especially in this younger age group actually improve with growth."

You know, this business of spontaneous improvement and even total correction was seen in the data of that large survey I published. So I would say it isn't at odds with that but maybe I'm missing something.

[leahdragonfly]

Hi Sharon,

Interesting second post from Dr Hey. That actually helps me understand where he is coming from. There are numerous, albeit brief, mentions of the possibility of spontaneous curve resolution in younger JIS kids, I think mainly in the age 6 and under group. My understanding is that these kids are felt to be late-diagnosed infantile idiopathic scoliosis, which frequently resolves spontaneously with growth. I also think that is why the newer terminology of "early onset scoliosis" came about, since many of the JIS cases of age 6 and under more closely resemble the natural history of IIS, while the "older" JIS cases of age 7 and above have curves that act more like AIS. It seems like the age of 6 is a rather pivotal point in terms of diagnosis. So I think this must be where Dr Hey is coming from with his comments.

My daughter was diagnosed at her 6th birthday, although I had noticed the telltale signs in her back for several months before her birthday. She was diagnosed at 26 degrees. She never had any documented progression. We braced her 3 months after her diagnosis (still at 26 degrees) and her curve quickly dropped, to the high teens, after 5 months of part-time bracing. We elected to give her a try out of brace, and at last check, 8 months later, she is still stable at under 20. Bracing was very difficult for our family, so we are thrilled that she has been able to have this time when her childhood is completely normal and carefree. Her next check-up will be in September, one year after she came out of the brace. So even if the curve has increased at that point, she had one free year, which is wonderful. No one knows at this point what will happen with her back, so we are just happy for what we have today.

[Pooka1]

Gayle,

It sounds like you figured out where Hey was going with his comments.

You are an excellent Mommy, BTW. :)

sharon

[leahdragonfly]

Hi Sharon,

Interesting second post from Dr Hey. That actually helps me understand where he is coming from. There are numerous, albeit brief, mentions of the possibility of spontaneous curve resolution in younger JIS kids, I think mainly in the age 6 and under group. My understanding is that these kids are felt to be late-diagnosed infantile idiopathic scoliosis, which frequently resolves spontaneously with growth. I also think that is why the newer terminology of "early onset scoliosis" came about, since many of the JIS cases of age 6 and under more closely resemble the natural history of IIS, while the "older" JIS cases of age 7 and above have curves that act more like AIS. It seems like the age of 6 is a rather pivotal point in terms of diagnosis. So I think this must be where Dr Hey is coming from with his comments.

My daughter was diagnosed at her 6th birthday, although I had noticed the telltale signs in her back for several months before her birthday. She was diagnosed at 26 degrees. She never had any documented progression. We braced her 3 months after her diagnosis (still at 26 degrees) and her curve quickly dropped, to the high teens, after 5 months of part-time bracing. We elected to give her a try out of brace, and at last check, 8 months later, she is still stable at under 20. Bracing was very difficult for our family, so we are thrilled that she has been able to have this time when her childhood is completely normal and carefree. Her next check-up will be in September, one year after she came out of the brace. So even if the curve has increased at that point, she had one free year, which is wonderful. No one knows at this point what will happen with her back, so we are just happy for what we have today.

[Pooka1]

Gayle,

It sounds like you figured out where Hey was going with his comments.

You are an excellent Mommy, BTW.

sharon

[LindaRacine]

deja vu

deja vu deja vu deja vu deja vu

[Pooka1]

deja vu

deja vu deja vu deja vu deja vu

LOL!

I saw her post twice so I answered twice. :)

[abbysmom]

Hi- this sounds like our story. My Abby (not the same one in the study) was diagnosed at her 5 yr. checkup. She continued to worsen under observation for the next year and a half- so, about age 6 1/2. Then, the curve began to regress on its own, and now at age 8 there is no curve at all.

[jillw]

abbysmom, that's wonderful. do you mind me asking what her curve was first diagnosed at? and how large it got before it started to regress?
Thanks!

[HaleyMom]

[QUOTE=Pooka1;80774]From the Hey clinic...

amazing-disappearing-juvenile-scoliosis.html (http://drlloydhey.blogspot.com/2009/02/amazing-disappearing-juvenile-scoliosis.html)

"Abigail is a young lady who was placed in a brace 3 years ago at age 7 and has decreased her curve from 40 degrees to 4! This is a perfect example of a juvenile scoliosis case, which you see in children between 5 and 7 years old, most of which will resolve as they get older. More than 90% of cases do NOT turn into idiopathic scoliosis."
QUOTE]

I sent Dr Hey an email shortly after Sharon posted his blog (he replied the same day) and had the opportunity to speak with him recently for 15 minutes.

He has BTW reworded his blog after a number of emails.
"Abigail is a young lady who was placed in a brace 3 years ago at age 7 and has decreased her curve from 40 degrees to 4! This is an interesting example of a juvenile scoliosis case, which you typically see in children between 5 and 7 years old. Unlike congenital, adolescent scoliosis and adult scoliosis, some juvenile scoliosis curves can improve or even resolve as they get older. Even though some juvenile scoliosis curves will improve, careful follow-up is always indicated when you have any form of scoliosis to document curves over time."

When he wrote 90% of JIS patients do not develop AIS, he did not mean to imply that their scoliosis problems are over when they hit 12 years old and they no longer are at risk of progression. He conciders JIS and AIS 2 completely different beasts.

He has seen many of his JIS pateints with mild curves improve on their own and moderate cases improve with bracing. He has never seen an AIS improve regardless of whether they were braced or not. Hence 2 completely different beasts.

JIS patients have a high chance of progression to surgical levels since they have a lot of growning ahead of them. However he said they rarely have the very rapid spurts in progression seen with AIS (ie several degrees/month) during adolesence. Bottom line - they still can progress as teens and still need to wear their brace, if prescribed.