What does a relapse look like??

June 22, 2005

Hi there. I've never posted before, but I've lurked (esp. in the

beginning) and learned so much from you guys. Hope you don't mind my

jumping in.

My little guy Charlie is 26 months old, born with bilat cf and I'm a

little worried. It seems like he's just hit a big growth spurt

(including the feet) and, maybe it's my imagination, but I'm starting

to notice a little tilt to his right foot (the more affected of the

two when he was born) when he walks. The top part of his foot is

definately tilted inwards and the Dr. (we see Dr. sey in

Atlanta) mentioned that he was " relapsing a little at the top " at our

last appt. back in April but said everything was still flexible and as

long as he didn't start walking on the sides or up on the toes, he

would probably be fine. He just encouraged us to not let up with the

shoes.

He's in the barred shoes at night now and I'm very very religious

about it. A few weeks ago, though, my dh put him down for the night

and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

check on him when I got in so he was out of shoes for the night.

Would this be enough time for a relapse to occur? HOnestly, that's

the first time it's ever happened and it makes me just sick to my

stomach that I didn't catch it He does have what the Dr. refers to

as " difficult feet " . Short and fat and hard to hold in a cast

correctly. He relapsed (or perhaps wasn't fully corrected) when he

first went into the shoes at around 4 months and we had a 2nd tenotomy

done, but everything has seemed fine since then.

I'm worried. I went ahead and moved our appt. up to the next

avaliable time (July 18th) and I think my dh and I are going to start

putting him in the shoes both at night and during naps in hopes that

will help keep things at bay if this *is* indeed a relapse.

Does anyone have any insight on this? Other things that I could do

(beyond not trusting my forgetful dh to put him in the shoes when he

goes to bed ) to help until the appt. in July?

The doctor is Ponsetti-OKed and I've looked down the list of the

" warning signs " that the doc isn't following protocol exactly. He

seems to have done everything exactly as listed with the exception of

putting the shoes as 60 degrees rotation rather than 70 degrees.

Anyone have any thoughts on that?

Ugh! I'm just so sick to my stomach about this I hate the idea of

putting my little guy through another surgery and I can't get over the

idea that if he's relapsing, this is somehow my fault for not being

diligent enough

June 22, 2005