Re: Not such great news regarding 's spine

[Guest guest]

I don't know where you are located, , but I just looked on line at

Children's Hospital, Boston, and they list congenital scoliosis as one of the

problems they treat. The link is www.childrenshospital.org/ortho. The site

lists each of the doctors and their specialties. Maybe one of them could help

you about a second opinion. Hope this helps.

- Michele

5/18/02 and Maddie 9/6/05 bcf waiting on brace

Sinanis wrote:

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)

wrote:

Holly,

Your doctor *should* have an orthotics person there to check the size

of your child's shoes at each visit. If you are seeing Dr. Ponseti,

he will have or one of his other staff take impressions

of Mia's feet at your f/u visits whenever they think it is time for

new shoes. The shoes, both Markell and are sized a bit

differently than regular street shoes, for instance, my son wears a 5

in regular shoes and a 2 1/2 in Markells. We just got his 3rd pair of

Markells and he is just over 15 months. Normally, they can wear the

shoes far longer than a regular pair of shoes since they are open

toed, from my experience they normally can continue wearing the shoes

until their big toe is totally hanging over the end (provided the

shoes don't get too tight elsewhere). The main thing you will

probably find is that when the bar starts getting too short or the

shoes too small this is when you will notice Mia complain about the

shoes.

Hope this helps,

>

> 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 would urge you to contact Dr. Stuart Weinstein at the University of

Iowa. In addition to his work as a colleague of Dr. Ponseti, he is

also known for his work with scoliosis. He is the one who treated my

son Jakob's bilateral clubfeet. He definitely knows the protocol and

can probably answer any questions you have.

His contact info is as follows:

Stuart L. Weinstein, M.D.

University of Iowa Hospitals and Clinics

Department of Orthopaedics Surgery

01026 JPP

200 Hawkins Drive

Iowa City, IA 52242

Tel:

Email: stuart-weinstein@...

>

> 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)