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Dear ,

That would be me! My daughter has a brace that is totally

working for her. She started off with a 37-degree curve. She is

now about 7-8 degrees (best guess from our clinical evalulation

yesterday) - we will have x-rays in the end of April.

I have posted a picture of her brace (front and back) on the website

here. When we met with Dr. D'Astous, he determined that our standard

Boston brace was ineffective and actually creating a whole new

curve. This new brace (developed by a former ER trauma surgeon

whose daughter had scoliosis) is very much " cast-like " . It locks

the pelvis into a straight position, and then works by builiding

each vertibrate up straight from there. The old brace pushed on the

curve and pretty much created a very straight leaning tower of pisa

effect.

I don't know about siblings (although of course we watch our son

like a hawk!) but according to Dr. D'Astous 's curve was caused

by a thoracotomy (surgery to remove a tumor) when she was 6 months

old (the scoliosis did not develop until she was 5years old). Our

local orthopedist does not agree with this (he claims to have data

showing that the side of the thoractomy does not correlate with

eventual scoliosis development (i.e. cut on the left does not equal

left curving scoliosis) but given the fact that I respect Dr.

D'Astous knowledge 1000% more than our local orthopedist, I would

have to disagree. In any case, Dr. D'Astous felt that was not

idiopathic (the cause was in fact known).

The place that makes our brace is called " Dynamic Orthotics and

Prothestics " and they do have a website. They are located in

Houston, TX but I know that the doctor () travels all over the

US and the world. He's a FANTASTIC guy - he even let make a

matching brace for her favorite doll.

Let me know if I can be of any further help.

Robin

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,

There is a few things you may want to try. You

may suggest instead of cutting off the cast the day

before to cut the cast off and reapply the cast at the

same time. This will keep the curve from going back

to the old position. My son is currently out of casts

due to other medical issues that need to be resolved

before we recast. My son also has a very ridged curve

and is currently at 76+ degrees and he is 2years. His

curve was similar to your childs. 6 months at 28 and

1 year at 50+ degrees and progressing due to no

stablization. He is in a night time bending brace

which helps but is only worn when he is a sleep. So

the curve goes back in the day to 76+. I hope this

helps some. Just something to try.

Amy and Jaeden

--- dmlmlm <dmayes1@...> wrote:

>

> Some time ago, someone posted about a brace that was

> working for

> their child. A doctor whose daughter had scoliosis

> had devolped

> it. It looked much like the cast (hole in the

> stomach and back).

> Does anyone know who this was?

>

> Also, I am scared to ask this question but .. should

> we be watching

> our new baby for scoliosis? Does this typically

> recur in siblings?

>

> Thanks again.

>

>

>

>

>

>

__________________________________

Celebrate 's 10th Birthday!

Netrospective: 100 Moments of the Web

http://birthday./netrospective/

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This question on genetics is one I have been trying to get info..Anything you find out please keep me posted I am thinking to have another child but a little worried but not too bad...

But I can find any consistent info

dmlmlm <dmayes1@...> wrote:

Some time ago, someone posted about a brace that was working for their child. A doctor whose daughter had scoliosis had devolped it. It looked much like the cast (hole in the stomach and back). Does anyone know who this was?Also, I am scared to ask this question but .. should we be watching our new baby for scoliosis? Does this typically recur in siblings?Thanks again.

Celebrate 's 10th Birthday! Netrospective: 100 Moments of the Web

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  • 3 years later...
Guest guest

Poor little guy sure has a lot going on with him. As to things related,

our rheumy told us when was first diagnosed that with his history

of allergies and asthma he has what she called a " hyper-immune " system.

This would make his diagnosis of yet another auto immune disease highly

probable.

BTW, have you had his hearing checked? did not speak either at 14

months (he had babbled and then stopped) and it turned out his ear

canals were filled. He had a 90% hearing loss we were unaware of. Once

they did the tubes (at 15 months) he began to hear ok, and talking

followed right after. We did not realize what he had lost until after

the operation and he could a phone ring, an airplane overhead, all sorts

of sounds he would run to. It was just something we had never noticed.

There are quite a few kids here on the list with various things besides

just the JRA. Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of tbird227@...

Sent: Tuesday, June 17, 2008 11:15 AM

Subject: Other questions

Hi,

We are new to the JRA dx and I was wondering if any of JoJo's other

issues could be related, his doctors are non comittal in regards to his

other issues and being related to JRA but figured I would get some input

from you guys.

Here is what we have experienced with ph and wonder if anybody else

has had similar things happen.

He has tachypnea (rapid breathing)

a heart mumor and occasional tachacardia (rapid heart beat)

global hypotonia (low muscle tone)

asthma

developmental delays (mostly fine motor skills now he had 1yr physical

therapy and 1 year occupational therapy)

he does not have any words yet (he is 14mos.)

sensory issues

repeatedly abnomarl metabolic blood work that does not form a specic

pattern of a known metabolic disorder

sleep apnea (obstructive and central)

possible mild cerabal palsy (he has a neuro that follows him and won't

make a dx till he is a bit older, his MRI showed some scarring in the

frontal lobe and delayed mylenation but other then that it was normal)

and he is on close watch for autism

We have a neuro appt. this thursday and it is the first time we are

seeing him since the dx of JRA and it will be interesting to see what he

has to say. (fortunately the neuro is in the same university system as

the rheumi and infectious disease doctor who are handling his JRA)

Blessings,

Tracey

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  • 9 months later...
Guest guest

I've been " treating " my candida for years.....and my DH still doesn't believe

that " MAYBE " this is my problem. How can I convince him?

He says I need to eat less meat....but it seems like I need a lot of it....or I

get these " hunger spells " . He says my body is out of balance and that I need to

eat less protein and more " good fats " . But I've heard that people with MCS need

more protein. Is this true?

SHerry

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Guest guest

>

> I've been " treating " my candida for years.....and my DH still doesn't believe

that " MAYBE " this is my problem. How can I convince him?

>

> He says I need to eat less meat....but it seems like I need a lot of it....or

I get these " hunger spells " . He says my body is out of balance and that I need

to eat less protein and more " good fats " . But I've heard that people with MCS

need more protein. Is this true?

>

+++Hi SHerry. Maybe your husband needs to read about candida first, so he

understands it, and why this program is designed the way it is.

There is a lot of false information and myths surrounding the eating of meat -

see this article: http://www.healingnaturallybybee.com/articles/meat2.php

Yes, your body is out of balance or you wouldn't have candida and MCS. But that

takes time and patience to correct.

Your husband is right about needing more good fats, however candida sufferers

have difficulty increasing them since they are all antifungal.

MCS people don't require any more protein than candida sufferers or anyone else

who is unhealthy. Human bodies are all the same and require the same set of

nutrients in order to be healthy, which is what this program is all about. For

encouragement see these many Success Stories:

http://www.healingnaturallybybee.com/success/index.php

The best, Bee

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