Re: a little discouraged

[Guest guest]

Hi ,

I'm so sorry you didn't see the results you were looking for Hang in I'm

sure they will come! I am scared also for my sons 2nd cast, but anxious for it

all at the same time...It seems that reading X rays is subject to a lot of

interpretation. We had an experience going into Levi's first cast where our

first doc @ home said he had a 35 deg. " S " curve with a 25 RVAD...then SLC got

better X rays & said he had a 31 deg " C " shaped curve with a 10 RVAD. It seems

things can change just by who reads the X ray .... Also Can you answer for me

what the Cobb is? I know that I should know, but our docs always talked to us

in terms of just his degree & his RVAD. Is the COBB another name for the

degree? Just curious...

Thanks,

Amber

>

> Hello all.

> went for his second cast yesterday at Shriners Philly, and I was,

albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB

after cast #1 is still 40. Also, I was originally told that his pre-cast

standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51

(using the same original X-ray in which he measured it to be 27 two months ago).

THAT is really conflicting and confusing to me. Anyways, 's new RVAD is

23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but

if it was 27 (as I was originally told) and down to 23, I am discouraged by that

as well. I will find out the CORRECT numbers this week when I talk to nurse S.

However, I am just sooooo discouraged that Jax only got 4 degrees of correction

after 9 full weeks in his cast. It seems like every story I have read on the

ISOP website the kids got WAY better correction than that. Also, 's

roommate (for both casts) got 0 degrees correction. It was just a bummer of a

day in general.

>

> Has anyone else experienced that the first cast didn't correct the COBB very

much, but subsequent casts did better? Please let me know your experiences!

Thanks so much!

>

> Love,

> Jen

>

[Guest guest]

hello,our first cast was the best correction we have got so far out of cast but that being said the last 2 we didn't really see anything even though our in cast numbers were better. I really depends on the age or your child. Thaddeus is almost 3 and we know it will take longer but we are hoping to catch a growth spurt in cast. I would be happy to get him under 20* to avoid surgery. I would defiantly stick with it for atleast a year and go from there. On 2011-11-19, at 12:24 PM, " Heath" <jaheath86@...> wrote:

Hello all.

went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general.

Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much!

Love,

Jen

[Guest guest]

Try not to be discouraged. My son had a big change then stayed the same for 3

casts. Docs wanted to stop casting but we pushed on.... This cast we opted not

to get an xray but he grew about 2 inches so there was improvement:) The numbers

game is stressful. Sometimes there is more going on than you think. Even when

numbers show little change the body including rib cage could be realligning. The

numbers aren't set in stone and there is a margin of error. My son is older and

our story is to just get him as straight as possible. My secret goal is to get

his numbers to 20 and hold it to avoid surgery. Since wishes don't always come

true we just have to all hold our breath and keep plugging along. It's okay to

be discouraged just don't give up yet!

Take care,

Tame

Sent from my iPhone

On Nov 19, 2011, at 2:24 PM, " Heath " <jaheath86@...> wrote:

Hello all.

went for his second cast yesterday at Shriners Philly, and I was,

albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB

after cast #1 is still 40. Also, I was originally told that his pre-cast

standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51

(using the same original X-ray in which he measured it to be 27 two months ago).

THAT is really conflicting and confusing to me. Anyways, 's new RVAD is

23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but

if it was 27 (as I was originally told) and down to 23, I am discouraged by that

as well. I will find out the CORRECT numbers this week when I talk to nurse S.

However, I am just sooooo discouraged that Jax only got 4 degrees of correction

after 9 full weeks in his cast. It seems like every story I have read on the

ISOP website the kids got WAY better correction than that. Also, 's

roommate (for both

casts) got 0 degrees correction. It was just a bummer of a day in general.

Has anyone else experienced that the first cast didn't correct the COBB very

much, but subsequent casts did better? Please let me know your experiences!

Thanks so much!

Love,

Jen

------------------------------------

[Guest guest]

Thank you so much for saying that to me! I think I am realizing more and more

through comments that I can't really look at individual casts with expectations.

I just need to understand that this is going to be a SLOW and steady (hopefully)

process towards improvement (positive thoughts). I think we all must start with

high hopes of 3 or so casts and being done. But, realistically, that's probably

not the case. I think I just get really nervous about the anesthesia each time

.... had a laryngospasm during extubation this time and had to be

" bagged " and given albuterol and decadron for his breathing. He did fine in the

end, but that just hightens my fears about exposing him over and over.

Thankfully, Jax is such a trooper in his cast and doesn't seem to mind it much

at all! POSITIVE THOUGHTS to all casted kids, especially those who had

disappointments in the past like we did.

Love,

Jen

> >

> > Hello all.

> > went for his second cast yesterday at Shriners Philly, and I

was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his

COBB after cast #1 is still 40. Also, I was originally told that his pre-cast

standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51

(using the same original X-ray in which he measured it to be 27 two months ago).

THAT is really conflicting and confusing to me. Anyways, 's new RVAD is

23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but

if it was 27 (as I was originally told) and down to 23, I am discouraged by that

as well. I will find out the CORRECT numbers this week when I talk to nurse S.

However, I am just sooooo discouraged that Jax only got 4 degrees of correction

after 9 full weeks in his cast. It seems like every story I have read on the

ISOP website the kids got WAY better correction than that. Also, 's

roommate (for both casts) got 0 degrees correction. It was just a bummer of a

day in general.

> >

> > Has anyone else experienced that the first cast didn't correct the COBB very

much, but subsequent casts did better? Please let me know your experiences!

Thanks so much!

> >

> > Love,

> > Jen

> >

>