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Re: Tame & Ben

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Me too...How'd it go, Tame? I hope you guys are well.

HRH

> Praying for positive results today.

>

> Eryn

> Mother of Brayden, 18 months old, 21* out of cast, 0* in cast, currently

> in cast #2

>

> ----- Reply message -----

> From: " Tame Olson " <dazies2001@...>

> <infantile scoliosis treatment >

> Subject: not sure what to think

> Date: Thu, Apr 5, 2012 10:51 am

> Our stories are similar. Can chat long... My son has a 2 pm cast change

> and I am currently starring as his entertainment:) sigh.

> We will be going into a brace this summer to. He is 5 and has plateaued at

> 25. Also don't know what to feel... But glad I read this today. So glad.

> I am hoping we get some good correction today so we are in the best

> position possible going into brace.

> More later.

> Hoping to avoid surgery and knowing that may not be a viable option can

> make a person sad.. Z

> T

>

> Sent from my iPhone

> On Apr 4, 2012, at 11:22 PM, " SR Clancy " <svale88@...> wrote:

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> Hi Everyone,

>

> Eden started casting when she was 29

> months old and 49 deg. She’s now 4 years old, and is in cast #9 as

> of two weeks ago. She didn’t get an out of cast xray this time, so

> we need to wait until June. Her in cast curve was around 19 deg –

> not much different than cast #8. Her out-of-cast curve was 30-32 deg

> before cast #8. She definitely appears to have plateaued. She’s

> getting a brace for the summer. Last summer’s brace corrected her

> to slightly better than 24 deg while in the brace, and the brace held the

> curve

> over the summer (she stayed around 32deg out of brace or cast). The plan

> is to re-evaluate at the end of the summer and decide whether to stay in

> the

> brace or go back into a cast. I believe her rotation is negligible.

>

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>

> The doctor talked long term for the first time. He

> said most kids in Eden’s situation (I’m

> paraphrasing) will hold their curve until their pre-pubescence growth

> spurt.

> If the curve improves now, (assuming we cast again in the fall?) and gets

> a

> little worse during pre-pubescence, she may not need surgery later. If it

> doesn’t get any better now, and gets a little worse during

> pre-pubescence, she may need one surgery. If it slowly continues to get

> worse, and worsens more during pre-pubescence, she may need more than one

> surgery. I’m guessing he is referring to growth rods and subsequent

> lengthening surgeries.

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> I was really hoping she wouldn’t need surgery. I’m

> bummed to say the least. I totally KNOW that Mehta specialized EDF

> casting

> has made a bad situation much, much better by straightening her spine as

> much

> as possible, correcting her rotation, aligning her body so that she walks

> &

> runs straight and doesn’t put uneven wear on her other joints, and

> giving

> her heart and lungs symmetrical and sufficient space to develop properly.

> So I am tremendously thankful for this treatment!!! But I had really

> hoped she would never need surgery. L

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> I don’t want to borrow trouble because this is

> something we won’t need to face for approximately 8 years. Heaven knows

> what could change in that time. I also know there are much worse things

> that a child could go through. Honestly, I don’t even know what to

> think or feel at this point. Please feel free to respond with your

> thoughts on this. Thanks!

>

> Sherry

>

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>

> PS My only definite thought is that for everyone who is told

> to “wait and seeâ€, please go to a casting hospital/doctor and get a

> second opinion. If

> your child needs casting, please please do it earlier rather than later.

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> We did not “wait and see†but were delayed due

> to a special situation. Eden has Erb’s

> palsy. It’s very mild. I think the pediatrician(s) were

> chalking anything out of the ordinary up to the erb’s and assuming her

> erb’s

> specialist was taking care of it. The erb’s specialist saw her at

> 12 months and said she was cleared and didn’t need to come back for

> further evaluation, so the kicker is no doctor saw her between 12 and 24

> months! She had a strange, loping gate when she ran and definitely had a

> rib hump which I discussed with her physical therapist at every monthly

> appointment.

> I thought it was uneven back muscle development where her normal side was

> strong/muscular

> and the muscles on the other side of her spine were weak/paralyzed due to

> nerve

> injury. Her PT (who is really good at what she does but still she was a

> 26 yr old relatively inexperienced kid out of college) didn’t recognize

> the rib hump for what it was. Her pediatrician (who definitely isn’t

> 26) didn’t recognize the rib hump for what it was either at her 24mo

> well

> visit. Her PT was concerned she was at risk for scoliosis, but was

> shocked, as everyone (us, ped, ortho) when the xray came back. She was

> casted

> within two months, but by 29 months of age, we had missed the early

> treatment

> window.

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> TODAY(Beta) •

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