Re: AMBER Question/Introduction

[Guest guest]

Awww ee, people can be so tactless! When I read your post

(another great one btw), I just want to give a big hug! Good

for him for participating!! Give him a squeeze from us will ya!

& Grace

>

> 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

>

>

>

>

>

>

>

>