AMBER Question/Introduction

[Guest guest]

Hi Amber, congratulations on your new baby! I'm glad you found your way to our

group here, most people are surprised to find out club foot happens so often

even though we almost never hear about it until it hits in our own families.

It's a fairly common birth defect though, and very correctible if it is treated

by the right doctor.

Right off the bat I'm concerned it sounds like your doctor has such a relaxed

attitude about the cast(s) slipping off. Like someone else said, ANY slippage

is bad and can do more damage than good if the foot is allowed to stay in a

slipped cast. By the same token, going with out a cast is not good either - as

the child will lose correction. However it's better to lose correction than

gain " bad " correction inside a slipped cast. (Was that clear as mud?)

Long story short, a slipped cast should be replaced immediately; if it can't be

replaced immediately, it should be removed at home and then replaced absolutely

as soon as possible....which is what your little boy did! haha

Casts shouldn't slip though, only in rare instances do they slip IF they had

been put on properly. That your son is having slippage issues is a big red flag

to me.

We don't know where you are or what doctor you are seeing. Does this doctor

cliam to be using the Ponseti Method? If not I really urge you to find one

who does, even if that means to travel a long distance. (Wait, hear me out!)

The difference in treatment and the over all long term success is worth it when

you figure this baby will spend the rest of his life on these feet you end up

giving him. A life time on sore feet isn't much of a future, kwim? Imagine

your's hurting every day, or being unable to do a lot of the every-day

activities you take for granted...even running and jumping or wearing a cool

pair of shoes for a special occasion.

Most of us here do have to travel a great deal to get our child's club foot/feet

corrected but we also know a lot of ways to make that possible on a tight budget

and would be thrilled to help you work that out. Myself, I have been going from

Oklahoma to Iowa City, Iowa to see Dr. Ponseti. Other's travel a great deal

further, but then again, lately there are more doctors to choose from so maybe

you are in the same city as one and just don't realize it.

Keep in mind though that a lot of doc's seem to claim to use the Ponseti Method

but actually do not. All cf treatment involves serial casting such as you are

getting - but " serial casting " only means a Series Of Casts. What makes one

treatment method better than another is how the foot and bones are manipulated

inside of that cast. Done right the foot will be corrected in matter of a few

weeks (average of 5 weeks) of serial casting.

I get tired of saying this but I don't know how else to drive home my point - I

currently have 2 sons, both were born with Bilateral Club Feet (both feet

affected). My oldest son was not treated with the Ponseti Method, although his

doctor came " highly recommended " . I did not know such a thing existed. He is

7 years old now and his feet continue to have issues. My 2nd son was treated by

Dr. Ponseti and at age 2 years, his feet are actually perfect with hardly any

visual appearance of CF. The older he gets, the less you can see any sign of

cf.

It's a hassell to travel out of state to get treatment, but the difference is so

black & white that I do not regrett one minute I spent away from home getting

the right treatment. This spring I am expecting my 3rd baby. Ultrasound shows

he too is a boy who will be born with bilateral club feet. Again we will travel

out of state to get our treatment rather than settle for less than perfect

results at home.

When a birth defect is as 99% fixable as clubfoot is, I just see no reason to

settle for 2nd best. These boys will live all their lives on the feet they

have, so why would I want them to have 2nd rate feet if they don't have to? A

couple years ago wanted to play T-ball and I enrolled him on a team. One

day at a game was running between two bases and got tagged " Out " . A man

said to me, " Why do they tag the little crippled kids out? They should let him

run the bases. " That little crippled kid he was talking about was my oldest son

out there looking like a pity-case on the ball field trying to run bases on his

crooked up feet that the " Highly Recommended Specialist " had fixed.

That is NOT what club foot is about!!! Club Foot should NOT cripple a kid!!!

(or earn that child hurtful remarks)

My 2nd son has perfect feet, I can't stress that enough - there is no sign of cf

in this boy aside from the little bit of extra skin at his ankle that goes away

in time.

If you are interested in finding out more, PLEASE take some time to look at the

Links and Files of this group for more information regarding the Ponseti Method

vs. other methods, for doctors, for tips, for research, testimonials, photos,

etc. and keep coming here too for support. We can help you find the best doctor

who can give your son the best feet possible, and if you have to travel for it,

we can help you travel and get treatment for as little $$ as possible.

Best of luck to you!

ee

Question/Introduction

Hello all, my name is Amber. I'm 19 years of age, and my son Keegan

is only 1 month old. I'm here obviously because of his club foot. I

was surprised to see so many others in a situation much like mine.

I've never heard of the condidition before giving birth to him, and

I was happy to hear that it isn't terribly serious. (In a sense it

is, but if that's the only problem he has, then I'm happy with that.

It could be a lot worse.)

Anyway, he's currently on his third cast so far, we went on

wednesday to get that one put on him.. this one is slightly turned

the other way, so he was quite uncomfortable when we got home that

day. He must have done a lot fo squirming underneath that cast,

because last night I noticed that his foot had gone up into the cast

a bit.. this didn't alarm me, as it did the last time as well, and

they told me I could just call in if it happened again. Since it was

very late at night, I was going to call first thing in the morning.

When I went into his room to feed him at 6am ish this morning, I

noticed that the entire leg cast had come off.

I can't help but giggle at him. 1 month old and he's strong enough

to wiggle out of an entire leg cast! I've never heard of anyone

being able to do that.

My question is: Has this happened to any of you? And how did the

doctors treat the situation? Did they have you come right in as soon

as it happened? It's friday so the office closes as of 4 today. and

they can't get me in, they think it'll be monday. This seems odd to

me, because I figured they'd have me come in as soon as possible. As

long as it doesn't mess up the progress he;s made already, I don't

mind waiting that long. It's already been so nice being able to bath

him properly, and let him sleep comfortably on his tummy right

beside me. I know he loves it too, you can tell he's very relieved

to have his leg exposed again. It's very swollen, so that warm bath

must have felt wonderful.

Okay, I'll stop babbling. Just curious to see if this has happened

to any of you before.

- Amber