RE: Re: Necessary positioning and views on radiographs [1 Attachment]

[Guest guest]

Sorry Meri, I don’t know

much about SMA.….An experienced ET doc might agree that a properly applied EDF

would be more comfortable and effective in halting progression.  A properly

applied EDF shouldn’t cause any more respiratory issues, because of the widely

trimmed chest expansion window in front and a hole on the concave side in back. 

Many, many parents agree that a good cast is better and more comfortable than a

brace….A properly applied EDF specifically for will not be a popular

alternative, but may be an effective one.   I really believe that it’s the lack

of knowledge on EDF that prevents children from receiving it.

Again, we all know

that I am no doctor….Just thinking out loud.

HRH

From:

infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On Behalf Of Meri Stratton

Phelps

Sent: Wednesday, May 19, 2010 7:26 AM

infantile scoliosis treatment

Subject: Re: Re: Necessary positioning and views

on radiographs [1 Attachment]

[Attachment(s) from Meri Stratton Phelps

included below]

Hi

All,

Thanks

for your responses.

Well, yesterday did not go as I had imagined.

The

resident met with us, saw in his wheelchair, and looked at his back, legs

and arms, then the orthopedist came in. He looked at 's back, and asked if

any x-rays had been done before. The last taken were of 's chest in August

after his g-tube surgery. They were done at 5am while was sleeping.

Well,

due to the radiation exposure, I was told that the chest x-ray was good enough

to monitor 's scoliosis. I asked about the brace he has and was told it

was the best I could do (see photo). This brace was made by an orthotist who

took measurements of using a caliper. No casting, no x-rays. When I asked

about the Rigo-Cheneau brace, I was told that " I could try it if I wanted

to " but he did not think it would work. Basically I was told that I could

try any brace I wanted.

They

start placing growth rods at 3 years of age.

The

resident did measure the COBB angle of the chest x-ray. It was 34.

Thoughts

on a good place to be seen in No. California? We have been to UCDMC, Shriners,

and now Stanford.

I

think that the philosophy is that my son has already outlived his

" lifespan " and that anything else is really palliative, since he is

not expected to reach his teens, much less adulthood.

Thanks

again for your guidance!

Meri

From: genericallyloud

<jennifer.leggett@...>

infantile scoliosis treatment

Sent: Wed, May 19, 2010 5:06:36 AM

Subject: Re: Necessary positioning and views on

radiographs

RVAD is the Rib Vertical Angle Difference. As

described by Mehta, this measurement is carried out at the apical vertebra of

the curve. In instances in which the curves resolved spontaneously, the RVAD

was less than 20° in about 80% of cases, and in those instances in which the

curves were progressive, the RVAD exceeded 20° in about 80% of cases

Jenn

Mommy to Cole, 2.5 years, 1st brace from rochester, 2 degrees down from 47

after 1 year in 5 casts

> >

> > Hi-

> >

> > Sorry if I am asking a question that has been reviewed many times

before.

> >

> > We are going to see an orthopedist tomorrow. My son, who is almost 28

months old, has never had spinal radiographs taken. I imagine some will be

taken tomorrow. From what I can see visually, he has 2 curves (one low lumbar,

and one upper thoracic), as well as rib rotation on the right. I have posted

photos previously.

> >

> > My son cannot sit up, so all films will need to be taken with him

lying on his back. He cannot move his head, and being on his tummy is quite uncomfortable

because it restricts his breathing.

> >

> > Any advice on what should be seen on the films is welcomed!

> >

> > Thank you in advance!

> > Meri

> >

>