Re: Thanks, Update, and another Question

[Guest guest]

Well, I have not heard of Dr. Davey, per se, but just so you know,

long stories short: two of our families here are from Oklahoma...and

both families had to seek care outside of OK to get on the right

track. ee's 3 sons all have clubfoot and they ended up in Iowa

City, and Larissa took to Dr. Dobbs in St. Louis.

If you do a quick search of the archived messages

for " Oklahoma " , " OKC " or similar terms, you'll probably come up with

some of the past threads regarding the doctors there.

Unfortunately, in reading the posts from the OK families passing

through here over the years we have been told of any doctors in OK

that know how to properly use the Ponseti method protocol, so I

can't provide you with any references to doctors in OKC for a second

opinion. It's really unfortunate, also, that many doctors (world-

wide) have fabulous reputations as great orthopaedic surgeons (and

rightly so), yet when it comes to treating clubfoot conservatively,

they miss the mark.

It could be that your son's foot is not fully corrected, it could

also be that his brace is not set up properly (or both). Either

way, it sounds like he's just miserable and the brace is causing him

to be uncomfortable...or maybe even causing him to be in pain.

Regardless of his personality (and I know exactly what you're

getting at- LOL!), I really don't think that what you're describing

is " normal " by any means. It sounds like something isn't quite

right. Do you have a way to share pictures of his feet and the

brace? We can take a look and see if there is anything glaringly

obvious about the set up.

I'm really sorry that your son is having such a hard time. Please

trust your mommy instincts and if you think something is causing him

pain, please don't put the brace on him- seek out a 2nd or 3rd

opinion. You're definitely not the first parent to come here with

this story. Hopefully you'll be able to use the information here to

figure out how to help your sweet Jack. It's possible for him to be

completely comfortable and happy in the brace...really, it is!

Have you seen the Global HELP booklet? There are links to this and

lots of other sites here: http://members.tripod.com/ponseti_links-

ivil

Hang in there!

>

> Thanks for all the kind words so far!

>

> My son is being seen by Dr. ph Davey at OU Children's Medical

> Center. He's one of the best from what we hear.

>

> Right now I'm trying to transition Jack into the brace... I'm sure

> that's not the best decision, but I just cannot stand to here him

> like he was last night. He cried so long that he was dehydrated!

> He stopped making tears and his mouth was completely dry.

>

> I figure that I'll keep it on him as much as he will allow right

> now. Which, he does fairly well during the day, other than nap

> times. It's night we have the big issue with. But, I thought

maybe

> if he could get use to being in it for long periods, he may just

> accept being in it a little more every day. ??

>

> I'd love to be able to just put it on him and have him get used to

> it, but he's such a strong willed kid, I feel like it may be

better

> to wrok with him than against him. Plus, since my husband is

> working and we have no family in town, I'm doing this alone for

the

> most part, and there's no way I can go without sleep for a week

> straight! He does fine during the day, but has to be constantly

> entertained. Even without the brace he only takes 20 minute naps!

>

> I thought maybe since we co-sleep he'd do better. He's in our

room

> anyways, but sleep with me until recently. But even in my arms

he's

> hysterical with the brace on. The second I take it off, he calms

> down and falls asleep for hours!

>

> I just hate this. Casting wasn't even this bad! Who knew that a

> dumb brace would be the hardest part.

>

> Did anyone transition their baby into the brace? Or is that just

a

> really stupid thing to even try? Note, like I said, my son is

VERY

> strong willed already. He's not your nice, sweet typical baby,

> lol. I love him to death, and I think he's sweet, but man oh man

is

> he a little pistol! He's a " I want it NOW, and I want it this

way,

> or my life is OVER! " kind of kid.

>

[Guest guest]

Hi again. I just checked out your pictures of Jack in the photos

section. He's adorable! I love the b & w picture of him w/ the casts

on.

It's been 6 years for me since I had a little baby in the brace, but

it seems to me like his shoes are way too big for his feet because I

can't even see his toes at all. Hopefully some of the other moms who

have more recent experience can say if this is okay or not. I'd be

worried that his foot would be moving around too much in there if the

shoes are too large. They make those shoes in different widths and as

small as 0000 I think.

Do you have pictures of his foot since it's been corrected?

[Guest guest]

Yeah... I'll have to find some. We haven't taken too many

recently. I just posted a big ole long update. lol.

>

> Hi again. I just checked out your pictures of Jack in the photos

> section. He's adorable! I love the b & w picture of him w/ the

casts

> on.

> It's been 6 years for me since I had a little baby in the brace,

but

> it seems to me like his shoes are way too big for his feet because

I

> can't even see his toes at all. Hopefully some of the other moms

who

> have more recent experience can say if this is okay or not. I'd

be

> worried that his foot would be moving around too much in there if

the

> shoes are too large. They make those shoes in different widths

and as

> small as 0000 I think.

> Do you have pictures of his foot since it's been corrected?

>

>