] Re: Newbie here

[Guest guest]

Hey Carol, weird isn't it how when you have a kid with cf you find yourself

alone at sea. That's what makes this group so powerful I think - I don't mean

" Take Over The World " power, but just the way we all flock to it here on a daily

or almost-daily basis whether we need to or not. CF is really a fairly

common condition but you (the public) just don't hear about it till it hits you

at home then you're like " HUH? " My 1st time through it, I was all alone for the

first 19 or 20 months till I found this place and suddenly I realized - well I

realized about a million and one things but most importantly was that I wasn't

alone and we weren't civil freaks for enduring this defect. We'd been going to

physical therapy twice a week for nearly a solid year at a Children's Therapy

clinic and in all that time I never saw nor heard of another cf baby and our

therapist, good as she was, she didn't know anything about it either.

Anyway, casting more often is probably a good option to prevent too much growth

in side the casts if that is the problem, but as far as stretching goes I have

mixed feelings about that. Just with my amature knowledge of how the Ponseti

Method works, my fear is doing something wrong. The bones need to be moved in

to their position in a certain sequnce of movements, it's a very A B C system,

and I'd be afraid of pushing things too far too fast some how, grinding bones or

something like moving the foot in to Position C before it's accomplished

position B for example. I dunno - others here can say more about that.

Anyway, best of luck with it all.

Happy Thanksgiving too!

s.

Re: Newbie here

Welcome, Carol and !

I can't help you with the curly-toes thing. Some extreme cases

where the toe bends under the foot are treated by " clipping " the

tendon. Some toes are taped to the other toes to help them

straighten out, and others are just left alone. Hopefully your

doctor can give you some advice on the tootsies.

How often is your doctor changing 's cast? If she's growing

too fast over the 7 day period, they've actually shown that the

casts can be changed every 5 days with success. Dr. Ponseti uses

this " every 5 day change " for families who have traveled to Iowa

City for treatment to shorten their length of stay.

Since will be out of the cast for 10 days, it's most likely

that she will lose all of the correction that she had. Hopefully,

it will go better the second time around for you.

If you don't mind sharing- what doctor/hospital is treating ?

There is a lot of good information in the files, links, and photos

sections on this site. Hopefully it will help you out. If you're

interested in researching some- here's a link to a website with

lists of Internet links concerning the Ponseti method:

http://members.tripod.com/ponseti_links-ivil<http://members.tripod.com/ponseti_l\

inks-ivil>

I hope this helps-

Regards,

& (3-16-00, left clubfoot)

http://ponseticlubfoot.freeservers.com/<http://ponseticlubfoot.freeservers.com/>

>

> Hi there!

>

> My beautiful daughter was born almost a month ago with

> bilateral club feet. She is being treated with the Ponseti

method.

> I have a couple of questions. First of all, both of her big toes

> curve inward toward her other toes and the second toe on her left

> foot sticks way up. Is this common for babies born with club

feet?

> The toes do not look to be in a normal position even when the feet

> are held in a corrected position. (She has moderate club feet

which

> are responding very well to the casts and her right foot is almost

> at correction with two casts. She will not need a tenotomy on

that

> foot.)

>

> Also, after we removed her second cast, her legs were bruised and

> her orthopedist recommended that we take a 10 day break with the

> casting to give them time to heal. Her orthopedist was trained by

> Dr. Ponseti and appears to be very careful and precise so we don't

> believe he caused the problem with carelessness or ignorance. My

> theory is that she grew too quickly for the casts. We are very

tall

> people and have big kids who grow quickly so I think that is what

> happened. Has anyone else had this experience?

>

> I am very new at dealing with this issue. I had three other

> children without club feet before was born so I have lots

of

> questions. I look forward to getting some information and

practical

> tips and support here. I don't know anyone with a child with club

> feet so I feel pretty alone in my struggle with . Thanks in

> advance for any help,

>

> Carol, mom to four kids, including an absolutely perfect baby girl

> with club feet

>