Re: LEIGH pregnant with CF baby, overwhelmed, confused....

[Guest guest]

That was my experience with my first son - four days old he was casted. I loved

those two weeks with Everett, before the medical world encroached upon us. And

it hasn't made any difference in his treatment.

s.

oh, I wanted to say that I wish we had not casted her so soon. If someone

had looked me in the eye and said, " go love on her for a week or so. This

works so well that a few more days will not matter. " and really convinced

me they believed in this method and we needed that time together I would

have done it. Instead, I felt this sense of urgency even though they said

they didn't need to start then. I would have my few more days with her

clubfoot as she was born with and enjoy her just how she was if I had to do

it over again.

Kori

[Guest guest]

I'm mainly a lurker who skims through to keep up with the latest

Ponseti news. There have been several posts recently that speak so

beautifully to parents who are new to club foot. I thought it might

be helpful to have a few of these on file (if there is room) for

parents who are just starting out. What do people think?

Caroline, mom to Zeke, 22 months, bcf, doing great (and like you all

told me when this was new for us, now I can put the brace on

blindfolded in no time at all)

> Leigh.......Ok everyone, group hug!!!!!!

>

> It'll be OK - you're doing the best thing in the world right

now...researching! And you have found the absolute best site for

that....THIS ONE!

>

> I share your granola, haha....for the most natural, non-evasive,

and complete correction available, Dr. Ponseti's method is it.

Dont' accept cheap imitations.

>

> And listen, this isn't your fault, either. You didn't accidently

do something to cause the clubbed foot, so don't beat yourself up

over that. Your pretty little girl is going to enjoy a long,

healthy, normal life that can (if she wants) include sports,

ballet, bikes, rock climbing, swimming,...you name it. She won't

need any special shoes (except the DBB phase), she'll dance at her

prom and her own wedding no problem.

>

> I urge you to find a Ponseti Qualified doctor now while there is

time. Many of us here (if not most) travel great distances to find

a Ponseti Method doctor. Myself, it's a 12 hour drive one way.

Other's cross oceans to get here, no kidding. Ponseti's method is

THAT good.

>

> Here's what you can expect in a nut shell. First you enjoy your

pregnancy like normal; then you deliver a bouncy baby girl. Then

your doctors are going to tell you that you need to cast her foot

immediately lest she be crippled and lay this whole guilt trip

thing on you. Then you are going to smile politely and tell them

No Thank You.

>

> Next, You love her and enjoy her for a week or two at home, get

healed, get rested, get bonded with her, take lots of pictures,

show her off to the family.....then you get in the car and drive to

the nearest Ponseti practicing doctor and get her fixed!!!!

>

> She will have to wear a series of full leg casts - that is from

toe to groin. They will be changed approx. every five days. She

will need 3 to 9 casts depending on her severity. She will probably

need a procedure called a tenotomy, where the achelies tendon in the

heel is nicked to give it stretch - this is rather minor and

usually done in the dr.'s office with mom and dad standing there

(it's NOT surgery!). Almost all cf kids have this done....after

that is done, they put the last cast on her and she wears that cast

for 3 weeks if at all possible. Some babies out grow it before 3

weeks are up but don't sweat the small stuff. The day she comes out

of that last cast, she enters the DBB. That is the Dennis Brown Bar.

>

> There are variations of the DBB currently being marketed but they

are all a pair of shoes connected with a bar. This system holds

the feet in place as they grow so the correction she got through

casting is not lost. DBB wear is very, very critical!!!!!! Her

foot will revert back to it's clubbed state with out the DBB.

>

> She'll wear the DBB 23 hours a day, 7 days a week for 3 months.

Gradually the time is reduced from 23, to 18, to 16, 14,

12......and this part scares a lot of people off but don't run when

you hear it....she'll wear this DBB every day (night) for about

three, maybe even four years.

>

> Seriously, please don't let that bit of information deter you from

this method. Usually by the time the baby is toddling the hours are

down to about 16 or so, maybe 14, so the DBB becomes little more

than an extension of her pajamas. My baby is in the 14 hour phase

now (he is 16 months old). He wears the brace from 7 pm till 9 am

the next morning. We hardly even notice it's there anymore. He

can do anything in the DBB he can do out of it except walk free

style (he can walk pushing a toy).

>

> Others disagree with me here but as far as dressing a child who

has to wear the DBB it's not that big of a deal in my opinion. You

won't be able to use sleepers with built-in feet, but myself, I just

cut the feet off of them. I can slip Everett's pants down to his

ankles to change his diaper when the DBB is on. With the one-piece

blanket sleepers (the kind that zip from foot to neck), I cut the

feet out of those, put it on him, then put the DBB on. If he needs

changed, I slip it down off his arms rather than remove the brace.

>

> Baby carriers are sometimes an issue. Lots of us here have opted

to use what is called a sling (you may have one already). I managed

to carry Everett casted and with the DBB in a sling.

>

> Car seats can be an issue, but generally speaking are not, sort of

depends on the size of your baby. Mostly though they just fit in

like usual, even casted or wearing the brace.

>

> Physical Therapy is almost never necessary.

>

> Babies treated with the Ponseti Method meet every milestone right

on cue. Some babies develop early, some develop late, that is

natural - but the casts and DBB don't interfer with rolling over,

sitting up, crawling, cruising or walking. The babies learn to do

all these things while wearing the DBB.

>

> Other health concerns - relax, there probably aren't any. It's

probably just a little crooked foot and nothing more.

>

> I know this is turning in to a novel but let me add just one more

thing breifly....I have two sons, both with bilateral clubbed feet.

My 1st son went though a terrible treatment plan due to my

ignorance. He has life long ill effects because of that. My 2nd

son was treated by Dr. Ponseti from day one. His feet are beautiful

and pain free and normal.

>

> Other's on this loop can direct you to the nearest good doctor.

Often there is a Mc house you can stay at during the

inital casting phase if it's too far for you to drive back and forth

each week. Any other questions or concerns or how to figure out the

logistics of traveling to the dr., let us help.

>

> After the casting, there's little else so the traveling will

decrease dramatically to about every six months, then probably once

a year.

>

> As you consider all this, keep in mind that this is a very

permanent fix, more permanent than surgery. This method allows the

foot go grow and develop normally. While surgery sounds tempting

because it's over with so quickly - the results are short lived and

almost always cause trouble in later years with scar tissue, pain,

stiffness, etc. One surgery is almost never enough, it usually

takes several surgeries once it starts. If the Ponseti method

doesn't work, it's for one of two reasons: either the dr. doing it

didn't know how to do it right, or the parents did not use the DBB

correctly. That said, in very rare cases (about 5%) the foot is

just stubborn regardless of having the very best care and may

relapse again as the child ages. In this event, you have another

option. That is surgery - but not just any surgery. Dr. Ponset

and/or his followers, do a minor operation where they transfer a

tendon from one spot to another. No bones are broke or cut, there

is no scar tissue to build up... just the tendon is tightened up and

that generally fixes a stuborn foot that is too old to re-cast.

>

> Have I left any stones unturned? God bless you and your new

baby!

>

> Best of luck to you!!!!!!

> ee, mother of two bcf boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>