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Peggy...

Please be sure that the orthopaedist that you're seeing is very

experienced in scoliosis. You can find a list of specialists at

http://www.srs.org/htm/mbrlst/mbrlst.htm. Some orthotists use off the

shelf braces. Others use custom fitted braces made from plaster cast

molds. I've never seen any research, but I would suspect that the

custom made braces are probably more comfortable and have a higher

success rate.

Since you've got limited financial resources, you might be better off

with Shriners.

http://www.shrinershq.org/Hospitals/ortho.html

It appears that the closest one to you is probably in Greenville.

http://www.shrinershq.org/shc/greenville/index.html

Good luck.

Regards,

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Wow, Scoliosis as age 8, how awful! My thoughts are with you.

My family doctor noticed some scoliosis on a chest X-ray when I was 12--he

decided to wait. I came back in a few months, and the curves were much

worse, so it is best to do something right away.

Good luck to you!

in the East Bay

At 07:39 AM 02/04/2001 -0500, you wrote:

>My daughter Tori saw an orthopedist in New Bern last Friday. Her first

>x-rays show a curvature of 30 degrees from T 4-10. He said it was a

>significant curve for her age (8) and needs bracing. Therefore he called

>another specialist in Greenville. This doctor is trying to squeeze her in

>this week and have her fitted for a brace the same day. The doctor did

>not like the idea of waiting until April when she returns for a

>visit. Please pray that this will happen this week so that we can get

>treatment started before she returns to NY on Saturday. Also pray that

>she can stay longer, if needed, in order to get her brace and pray for

>finances to cover it. Insurance will not cover this visit and we have

>been without an income since October 16.

>

>To the scoliosis group: Do they still use plaster to make a mold for a

>brace or do they have braces ready made that they can fit to each

>patient? Her curve is from T4-10, will it require a Milwaukee brace or

>will she be able to wear a low-profile brace? Does anyone know?

>

>Thanks for your prayers,

>Peggy Greene

>JPG Unlimited

>Antiques & Collectibles

>jpgreene@...

>

>Jesus laid down His life for us, so that He could give His life to us, so

>that He could live His life through us!

>

>

>

>

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  • 1 year later...
Guest guest

I believe it was just a couple of weeks ago I gave an update to

Tori's condition (systemic jra,MAS) She was doing great at the time,

but then the other shoe dropped. The dr. suspected she might have

developed AVN in her hips. Fortunately that proved negative. It was

determined that it was the jra activity that was creating her

discomfort and not AVN. Can you believe we were relieved to hear it

was jra? As many of you know, AVN is a side effect of pred,which

would have meant eliminating pred from her regimen.

Tuesday she had cortisone injections right into her hip joints. She

has shown increased range of motion since then and we hope it will

get her through this period of jra activity.

Veterans here might recall 9 months ago Tori went through MAS and was

hospitalized in pediatric icu for 5 weeks. Prior to that we were all

set to pursue antibiotic therapy. Now that she has stablized,

despite recent cortisone injections, we are looking into antibiotic

therapy again. So, as I did a year ago, I'm interested in hearing

about anyone's experience with antibiotic therapy. (I'm already

familiar with THE ROAD BACK).

Bob

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  • 3 years later...
Guest guest

Hi Ursula,

Only the Apheresis nurses have accessed her port, they were upset about her low

grade temps and said to make sure she was checked if she kept then up after her

infusion. They came up to the peds floor this am, looked very upset she was

there, I watch them each time andthey are always careful, sterile etc. The

Infectious Disease Doc ( she is the ID Guru up here) thinks maybe from the

Tegaderm covering the port when its accessed? It always leaves her really red

looking after its off. They will re culture after the Vanco is done, she said

there is only one bacteria that she would have to remove the port for, one of

the streps I think ( I was so shell shocked I don't remember, Tom will know but

is asleep) so we are safe. Thanks for your concern.

, mom to - CVID, asthma, GERD

Re: Tori

- who normally accesses the port? Will they reculture the port to make

sure it cleared? It is possible to clear the infection and keep the port.

Hopefully that will be the case. Glad to hear that she is looking better.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh<http://members.cox.net/maceyh>

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org<http://www.primaryimmune.org/>

IDF Patient/Family Handbook

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ne.org/pubs/book_pats/book_pats.htm>

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This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

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