Not such great news regarding 's spine

[Guest guest]

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]

Thank you! You know what, it's so funny. I've seen Carmell on every single

scoliosis forum I've been to. And she has soooo much to offer in terms of her

knowledge and experience. She's been extremely helpful with answering my

questions, as the spine is all new territory for us. I always tell my husband

she is the " frogabog " of scoliosis! :-)

and Claire wrote:

,

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,