Re: Holly Jean update. Good news!

[Guest guest]

Hi

I'm Elaine, mother of 9 mths, who's at 25 degrees with RAVD of 12, we're going in for her second xray in two mths to see if it worsens. I was just wondering if Holly was casted when she started? or if the improvement is happening on its own? It's very encouraging to hear your good news!

Thanks,Elaine

Subject: Holly update. Good news!To: infantile_scoliosis Date: Monday, June 9, 2008, 9:15 AM

Holly turned 1 year old today and had her 4th xray since being diagnosed 5 months ago with IS. Today her curve measured somewhere between 8 and 12 degrees and her RVAD less than 5 according to her Doctor at Children's Hospital in DC. I will be mailing the xray down to Dr. Khoury today. She started with a 36 degree curve at 7 months old, but the xray was taken while she was in a "standing" position so i never really trusted it. In any case, this new measurement is better than any we have had to date (others were 16 degrees and 27 degrees in that order) and her back is looking better than ever! So we are hoping and praying things continue to head in this direction. We go back in 5 months for follow-up. In regards to the recent post about xrays, i am convinced that they can be inaccurate if the child is not positioned correctly and moves during the xray. I insisted today that she be

xrayed lying down and if she moved i was going to insist they do it again. Fortunately, she was perfectly still!Thanks to everyone for all of the support and information. (mom to Holly IS, 1 year old)

[Guest guest]

Hi ,

That is so awesome to hear! Im very happy for you and your daughter.

I was told by my dr that a child in the standing or sitting position is better than the laying position to get the most accurate degree of the curve. Reason being when there laying the curve is kindof laying more flat and stretched out, but when there sitting or standing, thats there normal posture. So, when Hadley got an xray laying down, her curve was a bit better than when they xrayed her sitting.

Shauna

Subject: Holly update. Good news!To: infantile_scoliosis Date: Monday, June 9, 2008, 11:15 AM

Holly turned 1 year old today and had her 4th xray since being diagnosed 5 months ago with IS. Today her curve measured somewhere between 8 and 12 degrees and her RVAD less than 5 according to her Doctor at Children's Hospital in DC. I will be mailing the xray down to Dr. Khoury today. She started with a 36 degree curve at 7 months old, but the xray was taken while she was in a "standing" position so i never really trusted it. In any case, this new measurement is better than any we have had to date (others were 16 degrees and 27 degrees in that order) and her back is looking better than ever! So we are hoping and praying things continue to head in this direction. We go back in 5 months for follow-up. In regards to the recent post about xrays, i am convinced that they can be inaccurate if the child is not positioned correctly and moves during the xray. I insisted today that she be

xrayed lying down and if she moved i was going to insist they do it again. Fortunately, she was perfectly still!Thanks to everyone for all of the support and information. (mom to Holly IS, 1 year old)

[Guest guest]

What would happen if I asked them to do both positions during the xray, both standing up and laying down? Would they allow that do you think?

Elaine

mom of 9 mths

From: <julianoamerican (DOT) edu>Subject: [infantile_scoliosi s] Holly update. Good news!To: infantile_scoliosis @yahoogroups. comDate: Monday, June 9, 2008, 11:15 AM

Holly turned 1 year old today and had her 4th xray since being diagnosed 5 months ago with IS. Today her curve measured somewhere between 8 and 12 degrees and her RVAD less than 5 according to her Doctor at Children's Hospital in DC. I will be mailing the xray down to Dr. Khoury today. She started with a 36 degree curve at 7 months old, but the xray was taken while she was in a "standing" position so i never really trusted it. In any case, this new measurement is better than any we have had to date (others were 16 degrees and 27 degrees in that order) and her back is looking better than ever! So we are hoping and praying things continue to head in this direction. We go back in 5 months for follow-up. In regards to the recent post about xrays, i am convinced that they can be inaccurate if the child is not positioned correctly and moves during the xray. I insisted today that she be

xrayed lying down and if she moved i was going to insist they do it again. Fortunately, she was perfectly still!Thanks to everyone for all of the support and information. (mom to Holly IS, 1 year old)

[Guest guest]

Hi Elaine-

Holly has never been casted. Dr. Khoury wanted to take a wait

and see approach with her and so far it seems to be working. Of

course, we are staying cautiously optimistic.

I have read (and been told) that until the child can stand on their

own, a supine xray is the best tool for diagnosis and tracking.

However, i do agree that she always looks better when lying down

compared to standing or sitting. Even the doctor today commented

that her curve is really flexible towards that one side, so she can

create a really bad looking curve just by moving.

Best of luck to you

>

> From: juliano@...

> Subject: Holly update. Good news!

> To: infantile_scoliosis

> Date: Monday, June 9, 2008, 9:15 AM

>

>

>

>

>

>

> Holly turned 1 year old today and had her 4th xray since

being

> diagnosed 5 months ago with IS. Today her curve measured somewhere

> between 8 and 12 degrees and her RVAD less than 5 according to her

> Doctor at Children's Hospital in DC. I will be mailing the xray

> down to Dr. Khoury today.

>

> She started with a 36 degree curve at 7 months old, but the xray

was

> taken while she was in a " standing " position so i never really

> trusted it. In any case, this new measurement is better than any

we

> have had to date (others were 16 degrees and 27 degrees in that

> order) and her back is looking better than ever! So we are hoping

> and praying things continue to head in this direction. We go back

> in 5 months for follow-up.

>

> In regards to the recent post about xrays, i am convinced that

they

> can be inaccurate if the child is not positioned correctly and

moves

> during the xray. I insisted today that she be xrayed lying down

and

> if she moved i was going to insist they do it again. Fortunately,

> she was perfectly still!

>

> Thanks to everyone for all of the support and information.

>

>

> (mom to Holly IS, 1 year old)

>

[Guest guest]

Great news!!!!! Congrats!!!! wrote: Holly turned 1 year old today and had her 4th xray since being diagnosed 5 months ago with IS. Today her curve measured somewhere between 8 and 12 degrees and her RVAD less than 5 according to her Doctor at Children's Hospital in DC. I will be mailing the xray down to Dr. Khoury today. She started with a 36 degree curve at 7 months old, but the xray was taken while she was in a "standing" position so i never really trusted it. In any

case, this new measurement is better than any we have had to date (others were 16 degrees and 27 degrees in that order) and her back is looking better than ever! So we are hoping and praying things continue to head in this direction. We go back in 5 months for follow-up. In regards to the recent post about xrays, i am convinced that they can be inaccurate if the child is not positioned correctly and moves during the xray. I insisted today that she be xrayed lying down and if she moved i was going to insist they do it again. Fortunately, she was perfectly still!Thanks to everyone for all of the support and information. (mom to Holly IS, 1 year old)

[Guest guest]

It doesn't hurt to ask.... I'm going to ask Dr. to do both positions as well at the next casting.... StephElaine Salmento wrote: What would happen if I asked them to do both positions during the xray, both standing up and laying down? Would they allow that do you think? Elaine mom of 9 mths From: <julianoamerican (DOT) edu>Subject: [infantile_scoliosi s] Holly update. Good news!To: infantile_scoliosis @yahoogroups. comDate: Monday, June 9, 2008, 11:15 AM Holly turned 1 year old today and had her 4th xray since being diagnosed 5 months ago with IS. Today her curve measured somewhere between 8 and 12 degrees and her RVAD less than 5 according to her Doctor at Children's Hospital in DC. I will be mailing the xray down to Dr. Khoury today. She started with a 36 degree curve at 7 months old, but the xray

was taken while she was in a "standing" position so i never really trusted it. In any case, this new measurement is better than any we have had to date (others were 16 degrees and 27 degrees in that order) and her back is looking better than ever! So we are hoping and praying things continue to head in this direction. We go back in 5 months for follow-up. In regards to the recent post about xrays, i am convinced that they can be inaccurate if the child is not positioned correctly and moves during the xray. I insisted today that she be xrayed lying down and if she moved i was going to insist they do it again. Fortunately, she was perfectly still!Thanks to everyone for all of the support and information. (mom to Holly IS, 1 year

old)

[Guest guest]

I agree. Even more important than standing or sitting

is placement and keeping them still and being

consistent.

--- Tasha Fontenot wrote:

> When my son was going through casting a few times

> his doctor would do both.....standing up and laying

> down. They were completely different numbers.

> I think the key is to make sure it is done the same

> every time.

> Meaning every time do them standing. Or every time

> do them laying down.

> You get more of an accurate measurement to compare

> to the next one.

> Comparing a standing measurement to laying down

> measurement for us was like comparing apples to

> oranges.

> Of course this was from our experience.

> Tasha

> Mommy of twin boys- and 3 years old

> Fort Worth, Texas

> is currently in a brace-8 degrees out of

> brace!!

>

> Elaine Salmento wrote:

> What would happen if I asked

> them to do both positions during the xray, both

> standing up and laying down? Would they allow that

> do you think?

>

> Elaine

> mom of 9 mths

>

>

>

> From: <julianoamerican (DOT) edu>

> Subject: [infantile_scoliosi s] Holly update.

> Good news!

> To: infantile_scoliosis @yahoogroups. com

> Date: Monday, June 9, 2008, 11:15 AM

>

> Holly turned 1 year old today and had her

> 4th xray since being

> diagnosed 5 months ago with IS. Today her curve

> measured somewhere

> between 8 and 12 degrees and her RVAD less than 5

> according to her

> Doctor at Children's Hospital in DC. I will be

> mailing the xray

> down to Dr. Khoury today.

>

> She started with a 36 degree curve at 7 months old,

> but the xray was

> taken while she was in a " standing " position so i

> never really

> trusted it. In any case, this new measurement is

> better than any we

> have had to date (others were 16 degrees and 27

> degrees in that

> order) and her back is looking better than ever! So

> we are hoping

> and praying things continue to head in this

> direction. We go back

> in 5 months for follow-up.

>

> In regards to the recent post about xrays, i am

> convinced that they

> can be inaccurate if the child is not positioned

> correctly and moves

> during the xray. I insisted today that she be

> xrayed lying down and

> if she moved i was going to insist they do it again.

> Fortunately,

> she was perfectly still!

>

> Thanks to everyone for all of the support and

> information.

>

>

> (mom to Holly IS, 1 year old)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I will be interested in hearing if he will do both.

He is pretty big on the least amount of radiation and

not so big on the actual numbers. He didn't even do

an in cast xray for us this time. Also, when we had

the bad standing xray I asked if we should take

another one with laying still and he said, " No

because it won't change the treatment for today. "

He does leave a lot up to the parents so let me

know...

Jill

--- Kauffunger

wrote:

> It doesn't hurt to ask.... I'm going to ask Dr.

> to do both positions as well at the next

> casting.... Steph

>

> Elaine Salmento wrote:

> What would happen if I asked them to do

> both positions during the xray, both standing up and

> laying down? Would they allow that do you think?

>

> Elaine

> mom of 9 mths

>

>

>

> From: <julianoamerican (DOT) edu>

> Subject: [infantile_scoliosi s] Holly update.

> Good news!

> To: infantile_scoliosis @yahoogroups. com

> Date: Monday, June 9, 2008, 11:15 AM

>

> Holly turned 1 year old today and had her

> 4th xray since being

> diagnosed 5 months ago with IS. Today her curve

> measured somewhere

> between 8 and 12 degrees and her RVAD less than 5

> according to her

> Doctor at Children's Hospital in DC. I will be

> mailing the xray

> down to Dr. Khoury today.

>

> She started with a 36 degree curve at 7 months old,

> but the xray was

> taken while she was in a " standing " position so i

> never really

> trusted it. In any case, this new measurement is

> better than any we

> have had to date (others were 16 degrees and 27

> degrees in that

> order) and her back is looking better than ever! So

> we are hoping

> and praying things continue to head in this

> direction. We go back

> in 5 months for follow-up.

>

> In regards to the recent post about xrays, i am

> convinced that they

> can be inaccurate if the child is not positioned

> correctly and moves

> during the xray. I insisted today that she be xrayed

> lying down and

> if she moved i was going to insist they do it again.

> Fortunately,

> she was perfectly still!

>

> Thanks to everyone for all of the support and

> information.

>

>

> (mom to Holly IS, 1 year old)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I will let you know.... He is all about the least radiation, which I love about him, but I would like for her to be under 10 degrees standing before we start bracing just because I have "the fear". I know laying down is always a nicer number, so I figure if we can get her under 10 in a standing x-ray.... Well, it would just make me feel better! (if that makes sense!) Stephjill wienke wrote: I will be interested in hearing if he will do both. He is pretty big on the least amount of

radiation andnot so big on the actual numbers. He didn't even doan in cast xray for us this time. Also, when we hadthe bad standing xray I asked if we should takeanother one with laying still and he said, "Nobecause it won't change the treatment for today."He does leave a lot up to the parents so let meknow...Jill--- Kauffunger <slguerra710>wrote:> It doesn't hurt to ask.... I'm going to ask Dr.> to do both positions as well at the next> casting.... Steph> > Elaine Salmento <esalmento> wrote: > What would happen if I asked them to do> both positions during the xray, both standing up and> laying down? Would they allow that do you think?> > Elaine> mom of 9 mths> > > > From: <julianoamerican (DOT) edu>> Subject: [infantile_scoliosi s] Holly update.> Good news!> To: infantile_scoliosis @yahoogroups. com> Date: Monday, June 9, 2008, 11:15 AM> > Holly turned 1 year old today and had her> 4th xray since being > diagnosed 5 months ago with IS. Today her curve> measured somewhere > between 8 and 12 degrees and her RVAD less than 5> according to her > Doctor at Children's Hospital in DC. I will be> mailing the xray > down to Dr. Khoury today. > > She started with a 36 degree curve at 7 months old,> but the xray was > taken while she was in a "standing" position so i> never really > trusted

it. In any case, this new measurement is> better than any we > have had to date (others were 16 degrees and 27> degrees in that > order) and her back is looking better than ever! So> we are hoping > and praying things continue to head in this> direction. We go back > in 5 months for follow-up. > > In regards to the recent post about xrays, i am> convinced that they > can be inaccurate if the child is not positioned> correctly and moves > during the xray. I insisted today that she be xrayed> lying down and > if she moved i was going to insist they do it again.> Fortunately, > she was perfectly still!> > Thanks to everyone for all of the support and> information. > > > (mom to Holly IS, 1 year old)> > > > > > > > > > >

> > >

[Guest guest]

It makes perfect sense and I agree. I never thought

to ask him... please let me know what he says! jill

--- Kauffunger

wrote:

> I will let you know.... He is all about the least

> radiation, which I love about him, but I would like

> for her to be under 10 degrees standing before we

> start bracing just because I have " the fear " . I

> know laying down is always a nicer number, so I

> figure if we can get her under 10 in a standing

> x-ray.... Well, it would just make me feel better!

> (if that makes sense!) Steph

>

> jill wienke wrote: I

> will be interested in hearing if he will do both.

> He is pretty big on the least amount of radiation

> and

> not so big on the actual numbers. He didn't even do

> an in cast xray for us this time. Also, when we had

> the bad standing xray I asked if we should take

> another one with laying still and he said, " No

> because it won't change the treatment for today. "

> He does leave a lot up to the parents so let me

> know...

> Jill

> --- Kauffunger

> wrote:

>

> > It doesn't hurt to ask.... I'm going to ask Dr.

> > to do both positions as well at the next

> > casting.... Steph

> >

> > Elaine Salmento wrote:

> > What would happen if I asked them to do

> > both positions during the xray, both standing up

> and

> > laying down? Would they allow that do you think?

> >

> > Elaine

> > mom of 9 mths

> >

> >

> >

> > From: <julianoamerican (DOT) edu>

> > Subject: [infantile_scoliosi s] Holly update.

> > Good news!

> > To: infantile_scoliosis @yahoogroups. com

> > Date: Monday, June 9, 2008, 11:15 AM

> >

> > Holly turned 1 year old today and had her

> > 4th xray since being

> > diagnosed 5 months ago with IS. Today her curve

> > measured somewhere

> > between 8 and 12 degrees and her RVAD less than 5

> > according to her

> > Doctor at Children's Hospital in DC. I will be

> > mailing the xray

> > down to Dr. Khoury today.

> >

> > She started with a 36 degree curve at 7 months

> old,

> > but the xray was

> > taken while she was in a " standing " position so i

> > never really

> > trusted it. In any case, this new measurement is

> > better than any we

> > have had to date (others were 16 degrees and 27

> > degrees in that

> > order) and her back is looking better than ever!

> So

> > we are hoping

> > and praying things continue to head in this

> > direction. We go back

> > in 5 months for follow-up.

> >

> > In regards to the recent post about xrays, i am

> > convinced that they

> > can be inaccurate if the child is not positioned

> > correctly and moves

> > during the xray. I insisted today that she be

> xrayed

> > lying down and

> > if she moved i was going to insist they do it

> again.

> > Fortunately,

> > she was perfectly still!

> >

> > Thanks to everyone for all of the support and

> > information.

> >

> >

> > (mom to Holly IS, 1 year old)

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>