Re: I HATE SCOLIOSIS

[Guest guest]

Thanks ! Noah's numbers are 17 out of brace but 6 in? that is great

correction for a small curve in a brace! I am glad to hear it. hopefully that

is all it will take! I am hoping that the brace will get Luke's curve back down.

I am just worried about it being the first time for progression since we

started~ I appreciate you sharing your story as I don't want anyone else to

have to go through it but am happy to hear I am not alone~ it can feel that way

sometimes when it seems no one else in my immediate surroundings understands

the stress with scoliosis! Thanks so much! natalie

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> Oh so sorry that your little guy has to go back into a brace. You're

right - Scolosis does suck! And I hate it too. We were in a similar situation

last year. Noah had been braced for 1 year after casting. We were going in for

a check and to start weaning. At the appt we found out that he went from 9* to

17* in only 3 months and in a brace full-time! It's so hard to expect one thing

and then be thrown a curve ball! Just know that you're not alone.

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> I so wish that every child could be casted and then braced for 6-12 months and

then be done! Unfortunately it doesn't seem to go that way for everyone and

sometimes the struggle is longer than we expect.

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> Hopefully Luke will be braced and then back to his 5* (or better) in no time :

)

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> ~

> Noah 4 1/2 years old

> 9 months of casting in SLC; Currently on 1 1/2 years of bracing at 6* in brace

> And Mariella 11 months old - resolved Infantile Scoliosis

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> To: infantile_scoliosis

> From: natsmithot@...

> Date: Wed, 30 Dec 2009 12:20:13 +0000

> Subject: I HATE SCOLIOSIS

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> Hello~

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> hate is a word that I will not let my children use~ And I try my hardest to

never feel hate towards anything~ but today I am feeling HATE towards scoliosis.

I have been a member of the cast group since march 2008 but do not post much as

my son's journey only included 1 cas ~ it has been predominantly brace wear.

Anyway~

> We had Luke's check up yesterday ~ he has been brace free for 2 months~ last

check in september we were told he was at 5 degrees. The doctors have always

said that were not sure but that Luke could be a self resolver~ one that is

taking his time since he was not resolved in his first year (which is the

typical for self resolvers) but since he has never shown progression in the past

almost 2 years since diagnosis. In fact, none of his paperwork or anything else

ever said progressive~ just infantile scoliosis.

> The plan was to go for the check up and have them say ~ he looks great! NO

brace ~ we will see you for a check in 6 months and then we can go to yearly

checks... I had planned in my head the many phone calls I was going to make to

my family letting them know the great news!

> This is where the HATE comes in. We have a new dr.(trained in mehta casting)

since ours left in september~ he casually asked about brace wear which I told

him we have been brace free since November~ he quickly replied that we should

not be brace free as luke's curve was at 15 degrees. Still no RVAD. The dr.

tried to assure me that if someone walked in off the streets with those numbers,

he would not treat them with anything~ I was quick to let him know that we did

not just walk off the streets with that number and that luke had been at 45

degrees (25 RVAD) at 6 months old. He continued with how he was not worried. I

was thinking of course you are not worried...he is not your little boy! He said

the curve is where (more lumbar) if Luke was leaning in the xrays that's where

it would be~(implying luke may not have been standing straight)~ I was with Luke

and he was standing perfectly straight!

> I feel like it is a new ballgame~ the progression part~ I asked about full

time brace use which he replied he thought night time would be sufficient since

luke has been in night time brace since July and did alright. We will be getting

a second opinion in the next week or two from another dr as to brace wear time.

> Needless, to say as I went to put on Luke's brace last night for the first

time in 2 months, he ran away saying " no brace, no brace). It was all I could do

to hold back tears and talk about how important the brace is in helping his

boo-boo in his back get better. He tried wrestling with his sister which he has

been doing and the brace got her in her hand and she was crying! UGH!!!

> anyway, sorry for the rant~ just needed to vent~ This scoliosis journey

SUCKS!!!!!

> I hope everyone is enjoying the holidays!

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> Mom to Luke 28 months, night time brace, Philly Shriners, and mom to ,

5.5 years old)

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