Introduction

January 18, 2003

,

I hope also that this is just a misdiagnosis, but if not, it is very

correctable. Please, do NOT let what that Dr. said discourage you.

It is a very emotional rollercoaster in the beginning. We did not

know until our son was born that he had clubfoot. We have two local

orthopedic surgeons. The first one we saw told us we were " lucky to

have him " because where he did his internship he worked with

clubfoot. He told us he would put our son in casts for one year and

then we would see how many surgeries he would need. When he

manipulated his foot, screamed, and that Dr. never looked at

anything but his foot. We saw the second Dr. when he was one week

old. (He wasn't in casts yet because the 1st Dr. said he didn't

begin casting until 2 weeks of age ((I now wonder if this was due to

his busy scedule or his need to do some research)). In the meantime

we had been searching the internet and had found out about Ponseti

and had applied to a Shriner's Hospital. The 2nd Dr. told us we

needed to cast him that day that we were not doing our child any

favors. I told him I wish I had known before he was born about his

CF so I could have been prepared and had all my research done. He

said, " What do you mean known before? " And I said that they would

have found it by ultrasond. And he proceeded to tell me that you

cannot find out by ultrasound. I disagreed with him because of what

I had read on the net. But he stood his ground saying there was no

way to know. He was at the time carrying at least 50 cases of CF.

He did not cast him that day. It concerned me that he didn't even

know you could find out by ultrasound. So as I said don't let what

one Dr. says influence your decision greatly. He told us that

would be in casts for 6 months and then multiple surgeries on both

feet. His feet were classified as moderate to severe. We live in

Madisonville, KY (about 2 hours from you). We see Dr. Dobbs in St.

Louis, MO. I cannot say enough wonderful things about him. He is at

Shriner's Hospital and also has his own office. was casted

from 2 1/2 weeks old, until he went into the DBB at 10 weeks old. He

is now part-time in the DBB (12-14 hrs/day) and doing great.

Walking, no, running all over the place! He NEVER cries with Dr.

Dobbs. And if I do see babies that cry, you also see Dr. Dobbs

picking them up " making his peace with them " . It does seem so very

overwhelming in the beginning, but just be glad you are able to

gather all this information now. Search the net for all the clubfoot

pages you can find and read peoples stories and look at the

pictures. That was a great help for me. Good Luck to you and if I

can be of any assistance, please don't hesitate to contact me. I

could even talk with your wife by phone if that would be helpful.

Pam and (8-12-01)

> Hello everyone! I've been reading this message board for the last

> week or so. I thought it was time to introduce myself and our story.

>

> My wife is currently 34 weeks pregnant. We are expecting a boy! At

> the 20 week ultrasound, we were notified that bilateral clubfeet

were

> suspected. We have had several other ultrasounds since that time

and

> each has confirmed the diagnosis, although my wife and I have a

> hard time seeing it in the ultrasound ourselves. We can see the

> bones of the feet and they look " normal " .

>

> While we continue to pray that this is a misdiagnosis, I am trying

to

> get prepared and informed for immediate treatment following birth.

I

> sent an email to Dr. Ponseti, which was answered by his secretary

as

> he was on vacation. We live in Tennessee (lin) and have found

> no local doctors practicing the Ponseti method. We were directed to

> Drs. Busch and sey in Atlanta. I emailed Dr. Busch and was

> referred to the Vanderbilt Pediatric Orthopedic group. We met with

> Dr. Mencio last week to discuss his philosophy on treatment. I am

> very thankful for that consultation, as he mentions that surgery is

> required for 80-90% of his patients. He begins treatment with

serial

> casting, below the knee for 3 months. Surgery follows at 6 months.

> This was very disheartening because he added that he didn't believe

> in the Ponseti technique, which placed a grain of doubt in our

> minds. This is especially upsetting as we have great respect for

> those doctors. I am sure that he is a great doctor, but I would

> prefer to give non-surgical treatment a chance.

>

> All of the information that I have seen indicate that the Ponseti

> method has a very high success rate, without surgery and other

> complications. I am leaning toward this treatment because I have

> seen very little negative comments, and rarely a negative outcome.

> If for some reason surgery should be necessary, our child would

still

> be under 6-8 months old and I would know that I gave him the best

> shot at treatment without surgery.

>

> We are located halfway between Louiville KY and Atlanta. If anyone

> knows of doctors, other than Busch and sey, in these

locations,

> please let me know. We are searching for options. Of course, our

> first line of defense is praying that the ultrasound is wrong. We

> are leaning toward Drs. Busch/sey as they were so helpful via

> email. However, we have family in Louisville that could be helpful.

>

> I would appreciate any assistance that might help us find

alternative

> doctors, and affirm our decision to use the Ponseti method.

>

> Regards,

>

February 18, 2004

Hi Jane and welcome to the group. Sorry you have to be here but I

will say it's one of the greatest places to be where you actually are

connected with people either dealing with this disease or providing

care to someone who is first hand. What you will find is the many

things we all have in common and the alternatives that are out there.

Please keep us posted on your " mum " and with more details, we will be

able to provide better suggestions.

As to your question about your own well being....get a colonoscopy AS

SOON AS POSSIBLE. My husband's father died of this awful disease

when he was 57 years old with a tumor the size of a grapefruit in his

right colon. At the time, they estimated that it had been growing

well over 5 years. In turn, my husband was diagnosed with about a 5

year old tumor, right side, when he was 51! He had been testing

since age 43 but only with sigmonoscopies that DO NOT show the whole

colon. If his insurance had okay'd a colonscopy when he first

started screening, I wouldn't be posting on this board today. Our

son, who is 27, is having his first colonscopy in the next month or

two. With both parents having this disease, it is extremely

important for you to start screening early.

Fondly,

Monika

> Hello there,

>

> Just had a quick browse through the messages and you all seem a

> fairly positive bunch. I guess the reason why I'm here is the same

> as most of the rest of you - it's not the kind of group you just

hang

> around in. My Mum has just (today) been diagnosed with having

Colon

> cancer, little more is known at the moment. She's got a full body

> scan tomorrow, and then a meeting with her surgeon on Friday before

> (probably) surgery on Tuesday next week. The little we know (I

> wasn't at the hospital with her, my Father was - I'm 250 miles

away)

> is that they're going to remove a section of her colon, but she

won't

> need a colostomy in the long term (short term wasn't mentioned).

As

> you can imagine, I've got a whole heap of questions that I won't be

> able to get answers to for quite a while. We don't know how

> agressive the cancer is, treatments plans or anything yet - just

that

> it's there.

>

> On a totally selfish note, what do I need to know from my

perspective

> (I'm 31) to work out the risk to my own health - just to put you in

> the picture, my Father also had colon cancer 21 years ago and had a

> section of his colon removed. He's still going strong, and has

> adapted to life with a colostomy very well (well, after 21 years

> you'd hope so!).

>

> Jane

> UK

>

> PS Hope I haven't broken any group etiquette but thought I'd pretty

> much jump in with both feet :-)

February 18, 2004