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Re: Addison update

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Sending positive energy your way with high hopes that s curves stay where they are. I know you’ll be keeping a close eye on her back and would get in there quick for another cast or brace adjustment should you notice regression. Did they do in an in brace film, so you have a good baseline? Ive noticed that taking pics bi weekly is helpful in noticing regression.If you see regression sooner than expected, I’de press on for more casting.Good luck . Please keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of ToneySent: Wednesday, October 26, 2011 4:35 PMInfantile Scoliosis Email ListSubject: update Hi all, I wanted to give a quick update on . It's been a little over a year since we were diagnosed with IS, at just over 2 1/2 years old. She was diagnosed at 47*. 's prognosis at the time wasn't good - we were told she would need a cast pretty much every day for the next four years, and then surgeries every six months until she was about 12 years old. That's when I found this list, did some checking, and ended up at Shriner's SLC. By the time we got in there, was up to 57* (this was in January). Because of 's specific scoliosis, she's not a candidate for the Mehta technique. So, back to San Diego. A less then stellar experience with her first doctor, we ended up with a different doctor (who we are quite pleased with now!). She got into her first cast in January, and got down to 29*. Second cast went on in May, and she was down to 19*. She came out of that cast at the end of August. We all agreed that we could try bracing her after her second cast. Addie went into her brace at the beginning of October. She has to stay in 23 hours a day, but she's allowed to come out of the brace for baths, swimming, etc. Her doctor is very happy with the results. We're " on target " , and she's " holding steady. " If we can keep her where she's at, we're going to be doing really well. She tolerates the brace very well. Her bracing tech is excellent, and he's done a really good job to make sure he's getting correction in there. The biggest news for us is that her doctor isn't interested in seeing her for 5 months. He's that confident with the brace, and that we're hitting the right spots with the brace, that we should be good for some time. As you all know, in this world, 5 months is an eternity, and hearing encouraging words for this next little bit is quite the big deal. Father to , 3 1/2 years old

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Thanks .  After Addie was in the brace full time for a week, we went back for an x-ray.  The doctor was very happy with the way her spine looked, in brace, on the x-ray, and how the brace was fitting.  We're lucky that Children's San Diego has a " low-dose " standing x-ray machine.  I had to fight the techs hard to convince them that Addie could hold still for the x-ray (she had done it once before).

We'll keep an eye on her, but we're really trying to minimize her exposure to x-rays.  So we'll not get any additional x-rays until March, unless we just feel like something bad is going on.

On Thu, Oct 27, 2011 at 9:34 AM, Hyatt <heather@...> wrote:

 

Sending positive energy your way with high hopes that s curves stay where they are.  I know you’ll be keeping a close eye on her back and would get in there quick for another cast or brace adjustment should you notice regression.   Did they do in an in brace film, so you have a good baseline?   Ive noticed that taking pics bi weekly is helpful in noticing regression.

If you see regression sooner than expected, I’de press on for more casting.Good luck .  Please keep us posted.

HRH 

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Toney

Sent: Wednesday, October 26, 2011 4:35 PMInfantile Scoliosis Email ListSubject: update

   Hi all,  I wanted to give a quick update on .  It's been a little over a year since we were diagnosed with IS, at just over 2 1/2 years old.  She was diagnosed at 47*.

 's prognosis at the time wasn't good - we were told she would need a cast pretty much every day for the next four years, and then surgeries every six months until she was about 12 years old.  That's when I found this list, did some checking, and ended up at Shriner's SLC.  By the time we got in there, was up to 57* (this was in January).

 Because of 's specific scoliosis, she's not a candidate for the Mehta technique.  So, back to San Diego.  A less then stellar experience with her first doctor, we ended up with a different doctor (who we are quite pleased with now!).  She got into her first cast in January, and got down to 29*.  Second cast went on in May, and she was down to 19*.  She came out of that cast at the end of August.

 We all agreed that we could try bracing her after her second cast.  Addie went into her brace at the beginning of October.  She has to stay in 23 hours a day, but she's allowed to come out of the brace for baths, swimming, etc.

 Her doctor is very happy with the results.  We're " on target " , and she's " holding steady. "  If we can keep her where she's at, we're going to be doing really well.  She tolerates the brace very well.  Her bracing tech is excellent, and he's done a really good job to make sure he's getting correction in there.

 The biggest news for us is that her doctor isn't interested in seeing her for 5 months.  He's that confident with the brace, and that we're hitting the right spots with the brace, that we should be good for some time.  As you all know, in this world, 5 months is an eternity, and hearing encouraging words for this next little bit is quite the big deal.

 Father to , 3 1/2 years old

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