Re: Hello- need info!!

April 24, 2005

I'm so sorry to hear about Why do you think he relapsed? Did he

come out of the FAB too young you think? My son had the ATTT done five

years ago and his feet are really stiff. He never had the ponseti treatment

prior to this though. Dr. Dietz also did that surgery and does not seem very

pleased with the results either but had not indicated any further surgery. As

for strengthening, not sure but maybe worth a try. Years ago when was in

PT we had him doing things and one I remember that my apply to your case is

putting some kind of object between his big toe and next toe making him wiggle

it out with his toes. We used Kix cereal since he was a baby and wanted to eat

them when they came loose from his toes. Marbles would work, too. If your

child can stand up to do it, have him try to pick up marbles with his toes and

move them to a new pile a few inches away. This exercise really works the

foot muscles. Best of luck!

s.

Hello- need info!!

Hello everyone,

You might remember me from about a year ago, I was posting fairly

regularly back then. My son, , was born with a left clubfoot.

He was treated using the Ponseti method by a doctor here in Cedar

Rapids, IA, but relapsed when he was a little over 2 yrs old. We were

referred to Dr. Dietz at the U of IA. Jake had ATTT surgery done last

spring, when he was 3 yrs old. With that procedure, he also had an

achilles tenotomy done.

We've had an eventful year. Jake's surgery went well, and he was up

and running around like normal (but with a limp) within a couple weeks

of cast removal. Unfortunately he fell and fractured his left femur

(same leg as the clubfoot) the end of last November and was in a hip

spica cast for 8.5 wks. He now is back up and running around like usual.

In any case...he had a follow-up appt with Dr. Dietz this past

Wednesday, and he thinks that Jake's ATTT surgery was not entirely

successful. Apparently the tendon has not strengthened like it should

have, and the dr thinks it may have pulled out a little. He is

recommending that he have the surgery again, this time with a screw to

hold the tendon in place rather than just a suture, as well as yet

another achilles tenotomy (this would be the 3rd one, counting the one

he had done as a baby), and some work on his arch (apparently it's too

high or something).

Needless to say, the prospect of MORE surgery is really frightening to

us. Dr. Dietz will be seeing Jake next on June 29- he's giving him

some more time for that tendon to hopefully strengthen. We do plan on

asking about the tenotomy and arch work- if they're not totally

necessary then we don't want to have them done. My husband put it

well, that if it potentially could create a problem, why do it? Dr.

Dietz seemed to indicate that there's a window (he didn't say how

long) where the surgery can be done...if we wait too long, his foot

will stiffen up and then he'd need surgery done on his joints, which

is much more painful and would cause him issues as an adult.

I was just wondering if anyone has any input...things we should ask

the dr etc. We are very disappointed because we were told the failure

rate of ATTT surgery is very minimal, and here Jake seems to have

fallen in that category. We don't want him to continue to need more

surgery!! (that said, we do know that no one can give us a 100%

guarantee) We are also wondering if anyone has any ideas for

strengthening his muscles, and if anyone has had to have repeat

surgeries like it appears Jake will need.

Thanks,

Kassia

mom to 3/22/01 (Lt clubfoot, ATTT surgery April 2004)

and 11/22/02

April 26, 2005

Thanks for the ideas! They all sound like fun exercises- that was what

we were having trouble with, finding a way to make the exercises fun so

that Jake would want to participate. Of course, now that he's had the

spica cast too he does remember what it's like to be in the cast (and

how frustrating it was for him and also how he couldn't have baths), so

that's motivating for him too.

As far as his relapse, I think it was because he came out of the dbb too

soon. That was our fault I believe- he would fight us on putting it on

and so we talked to his dr about it, and he was ok with him coming out

early. If I'd had these message boards back then we would never have

done it! I think the problem was that he'd grown quite a bit and simply

needed a bigger bar and then it would have been more comfortable (I

think our dr at the time had said that the bar needed to be as wide as

his /hips/, not his /shoulders./ But, looking back, I do wish we'd

recasted him last year instead of doing the ATTT...that was what Dr

Dietz had recommended, he said that 3 yr olds don't usually respond well

to just casting and they generally need the ATTT anyways. Oh well,

hindsight is 20-20, isn't it.

Anyhow...thanks for your reply and I'll keep you all updated.

Kassia

3/22/01 (Lt clubfoot, ATTT surgery April 2004)

and 11/22/02

April 27, 2005

Dietz and Ponseti tried the re-cast on when he was just over 2 years old

and it didn't work. He had the ATTT.