Re: AMBER Question/Introduction

December 10, 2005

Oh God ee - I can't believe that people still use the word " crippled " !

Isn't that, like, a word from the fifties? What did you say to the man who

said that? What were the odds he'd make a comment like that to the mother of

said " crippled kid " !!

number23 wrote: 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

December 10, 2005

Well he was an old man and I guess political correctness just wasn't his cup of

tea. I don't remember saying anything because at that point was coming

off the field in tears for getting " out " .

s.