Re: Re: Atypical club feet????

[Guest guest]

Poor Guy! Gabe has other issues too, he's got some extra tissue in the left

kidney causing slight hydronephrosis. Also, when he was born, it took so longer

for him to urinate they had to cath. him. The dr said when he started puting the

tube through, he met with some resistance that gave after a bit of pushing...

like he had some excess tissue sealing his urethra. Gabe also has

craniosynostosis(premature closure of skull sutures). 2 of the most common

congentital birth defects... Really makes me wonder if maybe some of these kids

have some undiagnosed sydrome... It's a thought... I don't believe our early DRs

caused Gabe to have atypical feet, even withthe cast slippage. He always had

excess tissue, the extra heel creases, the crazy big toes... All that was

apparent at birth. It is a curious thing though... all the atypical feet that

are popping up lately. I've only been following this site for around 15-16

months now, but when I joined there was only, what?, two or three of us -- 4

tops? Now there's new cases popping up every week!

Angel Gray wrote: Faith, I am so glad to hear that

things straightened back out again!

I find the thing about excess connective tissue very interesting ... I do not

now, nor have I ever believed that Dr Mosca did anything wrong or out of order

to cause Kai's foot to become atypical. Heck, he managed to put casts on that

STAYED on what I now know is a foot that can bend in some pretty weird places.

But the thing is ... Kai's foot isn't the only place he has connective tissue

problems. At the bottom of his ears, there is something weird with the tissue

so that his lobes are actually attached by some connective tissue to the backs

of his ears (hard to explain), he was born with a short frenulum under his

tongue (tongue tied) and while it has stretched out a lot; he is never going to

be able to stick hit tongue out very far; the newest one is something called

penoscrotal webbing, where there is a web of connective tissue on just where is

sounds. He was supposed to have corrective surgery for that on Wednesday, but

he had the flu so will go back in 2 weeks to have it

taken care of. There is also apparently some issue in his heart that doesn't

effect functionality, but causes all his EKG's to come out looking like there is

a hole in his heart. All of that, plus there are/were at least 3 places in his

foot/ankle that were restricted. That, to me, is an awful lot of connective

tissue problems to be coincidental. I really believe that he has some underlying

condition of the connective tissue ... maybe it just did not form right? ... and

that is what caused the clubfoot in the first place, not to mention all the

other stuff.

Angel

Re: Re: Atypical club feet????

Right, while Gabe had plenty of flexibility(except dorsiflexion) and his feet

were easily corrected, the excess " fatty " tissue made it really easy to slip his

casts. I believe in his first , oh, 7 months of casting, he was probably casted

approx. 30 times. He did have all the usual tell-tale signs of atypical feet:

the creases, the high arch, the crazy big toes:), tons of excess connective

tissue... Once we finally got out of the casting phase and into 's

everything was peachy. Those shoes are amazing! Anyway, Gabe's feet, since he's

been walking, look better all the time. They relapsed once at 10 months, but

after some extra attention from DR Ponseti, they've been great since. He's 19

months now. We're crossing our fingers that things will keep going the way they

have been... By the way Angel, what you told me about growth spurts really must

have been what was going on with his left foot. Of course, by the time we got

worried enough to make a DR appt, they had gone back to

looking great... Next time I won't worry about it so much... Thanks!

angelmommy23 wrote: I am so embarassed every time my

site it posted because it isnt up-to-

date lol I have finally found my paper file for it, tho, and hope

to start working on getting it all up-to-date, including getting

fresh info out of Iowa, soon! *does happy dance*

As it happens, alot of things that may seem like they would be a part

of complex/atypical clubfoot, are not necessarily. Kai's foot was

severe in deformity, moderate in flexibility, yet corrects quite

easily ... it just either does something funky in the process or wont

stay.

Faith is right, tho, there are some things that point to a complex

foot. The one thing to remember is that not all of these feet slip

their casts. I don't know why, but Kai never did. He also only

slipped out of the Markells once or twice, but they just did nothing

for him.

Angel

> >

> > was born on October 27 with bilateral club feet. She is

in

> the

> > casting phase and is doing well. I was wondering how I would

know

> if

> > her feet are " atypical club feet " or not? I have heard that term

> and

> > do not know. Her doctor has not said that they are atypical and

has

> > described them as " on the better side of moderate " as club feet

go.

> > She has good flexibility (dorsiflexion) and is responding well to

> > casting. I would post a picture but am not sure how to put it

into

> the

> > body of this email. (I am high-tech challenged!)

> >

> > Carol and , born 10-27-05, bcf, serial casting stage

> >

>

>

>

>

>

>

>

>

[Guest guest]

, thanks for the link. I have heard of it and briefly checked into it.

It is a possibility, especially since my husband has the specific heart defect

it lists. Kai DOES have developmental delays. It is still too early to tell if

it is just speech delay or more, but it is there; and my step-daughter has very

mild retardation ... so you see, we already suspected a syndrome, but the

Geneticist we saw did not try very hard to narrow it down ... perhaps he just

did not have enough specific information, I guess. We were supposed to go back

in October (one year) but I didn't bother because it really doesn't matter too

much ... it would be more of an information sort of thing. DH is totally

opposed to pursuing anything syndromal ...

Angel

Re: Atypical club feet????

Angle,

Have you ever heard of Noonan's syndrome...NOT that I think Kai has

it!, but quite a few of the things mentioned in your mess. are common

with this syndrome. As I understand, you can have quite a 'mild' case

of it?? I will attach a link for you to check out. A few of the mom's

kids have been diagnosed with it on a kidney support site I belong to

and one child has a very mild case...IQ tested in the high range, you

really couldn't tell to look at him that he has it - I guess unless

you really knew what you were looking for. Just thought you may want

to check it out...

http://www.emedicine.com/ped/topic1616.htm<http://www.emedicine.com/ped/topic161\

6.htm>

& Grace

[Guest guest]

Could someone please tell me how to contact Dr. P and the one is St. Louis?

Thank you.

Bri

Christee wrote:

If Dr. P says the foot it A-Typical, even through pics, then I would tend to

lean twards that it is! I too sent him pics of my daughters foot. And later down

the road about 1 month later, I was able, and needed too for her foot, went and

saw him. And he still said her foot WAS A-Typical! So even through pics he can

tell. My daughters foot was fat, and chubby, it looked swollen. She had a deep

crease on the back of her foot above her heel, and it was very still pointed

downwards, but flexable when turned to the side. So good dorsoflexion, stiff

abduction. She also slipped and kicked 4 casts, and thats a big sign also. but

even to this day that old origional Dr. says she didnt have A-Typical even after

Dr. P says she does. Talk about an idiot, and he was!

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