Re: Allyson and Lori

September 20, 2004

Hi, my name is Jennipher and my daughter is Lhea. She's going to be 4 months in

just a few days. She was born with Bilateral Clubbed Feet and we found out

about her feet very early in utero.

My story is very similar to Mia's.

Since my husband and I knew early on about our daughters feet, we had alot of

time to research. I came across 's Homepage and that's how I found out

about Dr. Ponseti. I even contacted 's mom and she wrote back to me.

When we met with the Genetics Counselor for an Amnio, he referred us to Lhea's

doctor here at home (Chicago). He told us about the Ponseti method (I had not

mentioned to him that I knew about it either). Everything we read, he did. So

when Lhea was born, we sought her doctor again as we discussed.

On July 22nd, Lhea had her TAL. The heel dropped on her right foot but her left

was still stubborn. That was July 22nd. Okay - so now, she's casted for about

3 weeks. Then measured for AFO's (which per Dr. Ponseti, ARE NOT NECESSARY!)

and her DBB's. AFO's for 12 hours and 1 hour rest and DBB's at night for 11

hours. Honestly, AFO's did not do much for her aside from constant slipping.

This past week Monday I had an appt. with my daughters doctor. He suggested

that my husband and I meet with him Oct. 11th and have surgery for another TAL

for Lhea. " Let's try another TAL before the major surgery; Posterior Release " -

..... Can I just tell you RED FLAG! No way was I putting her through that

again.

I belong to another club, a mother told me that she felt her doctor was trying

to correct Lhea's feet with the DBB's. Keep in mind that her feet were probably

at 0 degrees - not 55 or 70. 55 yes, with the shoes on. Can you imagine the

discomfort?

Anyway, that pushed buttons and I contacted Dr. Ponseti. The same week I got an

appt. for Friday. Thursday evening we drove to Iowa and stayed at the

Mc House. Lhea is now under Dr. Ponseti's care and he felt - get

this....THE FIRST SURGERY WAS UNNECESSARY!!!! OMG, can you imagine what I was

thinking!!!!!

Today, I am, per Dr. P's staffs suggestion - canceling Lhea's future appts. with

her current doctor here in Chicago. Dr. Ponseti's method was very different in

the casting procedure than with her current doctor. I am not bashing Lhea's

current doctor, just saying that maybe, he could've avoided her first surgery.

So, I too would like to become involved with the Oprah campaign. I already live

in Chicago. Please let me know what I can do.....

Thank you -

Jennipher

Lhea's mom, Bilateral Clubbed Feet

Mia Fisher addisyn_mom@...> wrote:

I would be extremely interested in getting involved with the Oprah campaign,

especially since we are leaving on Friday 9/24 to see Dr P for my daughters BL

Atypical CF. He told me he could treat her feet with no problem. The doctors

here where we live and have been treating her thus far said surgery is all they

know to do after " the casting method failed " . If Dr P can fix her it would

truely be a miracle to us!! Surgery is not an option, that is why we have

decided to go directly to Dr P himself. Please let me know of anything I can

add to what you have already done. I can't add my story as yet since we haven't

seen Dr P, but I'm sure by the time anything comes about we will have had some

results.

Mia

Addisyn 6/24/04 BL Atypical CF

Cody 2/6/01

__________________________________________________

September 20, 2004

Welcome Jennipher!

Thank you for sharing your story Sorry that you and Lhea have

gone through unneccessary treatment but I am glad to hear that she

is seeing Dr Ponseti now!

Marilouise

9/9/03, LCF, DBB 23/7

Owen and 3/20/99

> I would be extremely interested in getting involved with the Oprah

campaign, especially since we are leaving on Friday 9/24 to see Dr P

for my daughters BL Atypical CF. He told me he could treat her feet

with no problem. The doctors here where we live and have been

treating her thus far said surgery is all they know to do after " the

casting method failed " . If Dr P can fix her it would truely be a

miracle to us!! Surgery is not an option, that is why we have

decided to go directly to Dr P himself. Please let me know of

anything I can add to what you have already done. I can't add my

story as yet since we haven't seen Dr P, but I'm sure by the time

anything comes about we will have had some results.

>

> Mia

> Addisyn 6/24/04 BL Atypical CF

> Cody 2/6/01

>

> __________________________________________________

>

September 20, 2004

Thank you, Marilouise!

I canceled all appts. for my little bundle and now, we are just with Dr.

Ponseti!

Marilouise Tozier verylittlebrain@...> wrote: