Re: Not such great news regarding 's spine

[Guest guest]

My older son has a spinal fusion when he was 15 years old. He had it done at

Shriner's.

DeeDee

California

[Guest guest]

-

I don't remember what area you are in but good luck to you on the

2nd/3rd/4th opinion-smart Momma!! A couple of websites you may want

to check out-Riley Children's Hospital in Indianapolis, and the u of

i has a great scoliosis website-here's the link:

http://www.uihealthcare.com/depts/med/orthopaedicsurgery/specialservi

ces/scoliosiscare.html

Surprisingly what I remember was that Ponseti did both research in

clubfeet as well as scoliosis-so if you end up having to do surgery,

he may be able to help answer the bracing issue/question.

Take care-glad to hear his foot is doing well!!

hth,

kathleen

mom to david fab 12/7 8/28/04

> >

> > When your child is in the shoes with the bar, do you change sizes

> just like when you move up sizes with their regular shoes?

> >

> > Thanks in advance,

> >

> > Holly

> > Adopting Mia in China 14 months-planning on taking her to Dr.

Ponseti

> >

> >

> > ---------------------------------

> > Yahoo! DSL Something to write home about. Just $16.99/mo. or

less

> >

> >

[Guest guest]

,

I'm sorry that you have had this news about your little guy.. It sounds

like you have a good plan and that you are a strong mom who will be

able to help through whatever is ahead for him.

I don't have any direct experience to share, but wanted to mention that

several of us here know of a mom named Carmell, whose son Braydon had

both cf and congenital scoliosis, along with quite a few other issues,

who has had various surgical interventions for his spine. Although I

haven't seen her online in quite a while, she's very knowledgeable

about the various conditions and treatments and always had been eager

to help to other parents. She had a family website with much

information on her son's experience and medical treatments. I think I

can dig out an email address and/or the link to her site if you think

it would help. let me know.

Best wishes to little and all of you,

Take care,

[Guest guest]

,

This will probably be no help at all, but thought that I would let

you know that I had spinal fusion from idiopatic scoliosis at

15...Went through everything that will be going through

afterwards...the cast and then the brace. While these are a

nuisance, they really weren't that uncomfortable, so I don't think

that they should be an issue with the AFO.It may be silly to think

that since he is younger, it should be even less of an issue, but it

might be true. Good luck.

( 2/1/05 bcf)

> >

> > When your child is in the shoes with the bar, do you change sizes

> just like when you move up sizes with their regular shoes?

> >

> > Thanks in advance,

> >

> > Holly

> > Adopting Mia in China 14 months-planning on taking her to Dr.

Ponseti

> >

> >

> > ---------------------------------

> > Yahoo! DSL Something to write home about. Just $16.99/mo. or

less

> >

> >

[Guest guest]

,

I don't remember if I mentioned this to you before but Dr. Dobbs also

deals quite a bit with scoliosis.

> >

> > Hi, all!

> >

> > We had a follow-up with 's ortho last week regarding 's

> foot and his scoliosis. The foot looks great, he said. Heel cord is

> a little tight and said we could get an AFO to use while he is

> standing and learning to walk so that he doesn't tip-toe. He wasn't

> adamant about it. I am considering it, though.

> >

> > The scoliosis, unfortunately, has progressed 5 degrees since the

> end of August, which is when he was first diagnosed. So, he wants to

> do a spinal fusion surgery. We will be going for second (and third,

> fourth, as many as necessary) opinions to see what other docs have to

> say. It's hard because there aren't many orthos who specialize in

> congenital scoliosis, which is different from infantile or idiopathic.

> >

> > So, I was thinking, if he DOES need to to have the spinal fusion,

> he will need to be in a type of body cast for 2 months and then a back

> brace for a number of months (3 or more). I don't know if he will be

> able to wear the FAB comfortably while in these new contraptions. Do

> you guys think the AFO would be an okay substitute while he's in the

> body cast and/or brace? I just thought of this now that I've had some

> days to process the information, so I am compiling a BUNCH of

> questions for our doc. In the meantime, I thought I'd ask and see

> what you all think.

> >

> > Thanks for your help!

> >

> >

> > (12/15/04, RT CF, FAB 12-14 hrs./day)

>