Grrrr and Question

July 31, 2006

Hi all,

Maddie has started to develop some pretty angry red marks on the tops

of her feet with the s. They're sending us some of those

pringle shaped things, and I was wondering if anyone had a picture of

them, so I could get and idea how they work.

And now for my grrr. Maddie has started EI for gross motor skills and

is going to a neurologist next week because her ped thinks something

more is wrong than just the clubfeet. My grrr is, after reading a lot

of the posts, doing research, and talking to her PT, there seems to be

a lot of things that may have been missed by her ortho. It would

appear that she is pretty bowlegged, she has really deep dimples and

creases in her knees and elsewhere, definite muscle tone problems and

more. I'm just frustrated that although I pointed out some of these

things, they were kind of dismissed by her orthos as nothing. just

needed to vent. I'll know more after her neuro visit.

Michele

July 31, 2006

Michele-

Hugs to you and Maddie. I gotta say, our best helper has been our EI

PT. She really has pointed us in directions we need to go when

talking to 's ortho. I figured it helps because she spends 1

hour a week each week with him while we typically spend 30 minutes

every 6 months with 's doctor. We just had our PT visit on

Friday so that we knew what questions to ask our ortho since his 6

mo checkup is tomorrow. Good luck with everything and hang in there.

Kathleen

mom to david bcf fab 12/7 23 mo old

and daughter edd 9/1/06

>

> Hi all,

> Maddie has started to develop some pretty angry red marks on the

tops

> of her feet with the s. They're sending us some of those

> pringle shaped things, and I was wondering if anyone had a picture

of

> them, so I could get and idea how they work.

> And now for my grrr. Maddie has started EI for gross motor skills

and

> is going to a neurologist next week because her ped thinks

something

> more is wrong than just the clubfeet. My grrr is, after reading a

lot

> of the posts, doing research, and talking to her PT, there seems

to be

> a lot of things that may have been missed by her ortho. It would

> appear that she is pretty bowlegged, she has really deep dimples

and

> creases in her knees and elsewhere, definite muscle tone problems

and

> more. I'm just frustrated that although I pointed out some of

these

> things, they were kind of dismissed by her orthos as nothing.

just

> needed to vent. I'll know more after her neuro visit.

> Michele

>

July 31, 2006

Michele,

I'm sorry about your frustrations at not getting her doctors to

discuss all the various concerns with you. I hope that you have a

good experience with EI and that you'll get a good advocate for Maddie

as far as diagnosing potential issues and working through them. Good

luck with the neuro appt...if you don't like what you hear, then

remember that you're entitled to a second opinion...or third.

That " Mommy instinct " is usually the best at knowing when something

isn't right- so trust your gut!

Please keep us posted and I hope the " pringles " work well for you.

July 31, 2006

I used the " pringles " when wore AFO's - they are like the tongue of a

shoe, you slip them in then buckle the strap over the top. THey're made out of

foam.

ee

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