RE: What to do?

[Guest guest]

At 12:41 PM 5/6/2004, you wrote:

> I guess I am just looking for someone to tell me

>everything will be alright and I am just over-worrying. At least we

>have the next 6 months or so with the shoes....

I think if you're looking for that... at least with the recent info from

Iowa about 4-5y you're not going to get it. :~{ I know how you're feeling

though - wouldn't it be nice to not worry about taking them off too

early? I would LOVE to be done with this... but I know it's not supposed

to be that way and won't be. So I just am trying to accept it and pretend

that I never thought we'd be done at 2-1/2. But you're right, I'd be

worried too. I am bracing myself for this in our future. Why not contact

Dr. P and ask him to send your doc something with the info they're detaling

about extending the time? Or, have Dr. P write a script for the

shoes. It's not like you can't fill it at any orthotics shop right?

Do you even need a script to get the boots?

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

[Guest guest]

,

My son, Evan, also was so easily corrected and looked so great at 2

years old that our dr. told us we were finished with the bar. He is

now 3 yrs 8 mo. old and we are dealing with some strange sort of

relapse involving his tibial tendon. The regret for not continuing

with the brace for much much longer is fierce. Evan is proof to me

that an easily corrected foot is not a forever corrected foot. I'm

sure you have read thru all the stats/info on best age to quit but I

thought it might help to hear from someone whose story sounds similar

to yours with the easy correction. Please stick with the brace...I

would give anything to go back and do just that until age 4

and Evan (8-17-00, bilateral cf)

> Hi all...Jaren just had a checkup this morning at the Mayo Clinic

and

> the dr. said his foot looks fantastic. In fact, he said that it is

> the best foot he has ever seen. Which is all great and wonderful,

> but he also said that when he grows out of the shoes he has now, he

> will not have to wear any shoes at any time any more. Jaren just

> turned 2 on April 18. I am very skeptical of not having him wear

the

> shoes anymore. The dr. guessed it would be about 6 more months.

> Isn't this too early? I didn't go to the appt, but my dh told me

the

> dr. said that children that have to wear them longer are the ones

> that don't progress as well as Jaren. I personally would feel much

> better having Jaren in the shoes at night until he is at least 3.

> Also, my dh asked approximately how many hours Jaren should be in

the

> shoes, and the dr. said they don't really have a specific number of

> hours, just that he needs to wear them at bedtime. He is in them

> real close to 10 hours a night...is this enough? I know right now

is

> the prime time for a relapse if there is going to be one, and I

don't

> want to take the shoes off in 6 months and then end up with him

> relapsing. The dr. said he doesn't have to see Jaren for 2 more

> years. I have a feeling we will be making a trip to Iowa just so

we

> can get more shoes. I guess I am just looking for someone to tell

me

> everything will be alright and I am just over-worrying. At least

we

> have the next 6 months or so with the shoes....

>

[Guest guest]

Kim,

I understand your dilemma and will be facing it myself too. We had been told

that Rose would come out of the brace at 2 1/2 and although that is more than a

year from now, I wonder if that will still be the case.

We were told at birth that Rose's foot was a mild case of the most severe form

of club foot. I never received a more scientific diagnosis than that. It is my

understanding that the length of time in the brace is determined by the severety

of the case of club foot. The more severe the case, the longer the whatever is

active that causes relapse.

You did not mention how severe a case of club foot that Jaren was diagnosed

with. At any rate, I am sure that if you explain that you would feel better

keeping him in the shoes until he is 3, all you need to do is express your

feelings to your Dr. and it will be a done deal. That way, any extra time you

invest after he is 2 1/2 is insurance so you can keep it up as long as it is

feasible for you.

I truly do not know what I will do when Rose is 2 1/2. If Dr. Mosca says at

that time to discontinue the brace, we probably will. I know that Dr. Mosca

started practicing the Ponseti method about 4 years ago so if he routinely lets

kids out a 2 1/2 he is starting to get some feedback. I figure by the time Rose

is 2 1/2, he will have some pretty good data and we will follow his

perscription, whatever it is.

Best of luck,

Robin & Rose

3/12/03 Right club foot

cramik412 cramik@...> wrote:

Hi all...Jaren just had a checkup this morning at the Mayo Clinic and

the dr. said his foot looks fantastic. In fact, he said that it is

the best foot he has ever seen. Which is all great and wonderful,

but he also said that when he grows out of the shoes he has now, he

will not have to wear any shoes at any time any more. Jaren just

turned 2 on April 18. I am very skeptical of not having him wear the

shoes anymore. The dr. guessed it would be about 6 more months.

Isn't this too early? I didn't go to the appt, but my dh told me the

dr. said that children that have to wear them longer are the ones

that don't progress as well as Jaren. I personally would feel much

better having Jaren in the shoes at night until he is at least 3.

Also, my dh asked approximately how many hours Jaren should be in the

shoes, and the dr. said they don't really have a specific number of

hours, just that he needs to wear them at bedtime. He is in them

real close to 10 hours a night...is this enough? I know right now is

the prime time for a relapse if there is going to be one, and I don't

want to take the shoes off in 6 months and then end up with him

relapsing. The dr. said he doesn't have to see Jaren for 2 more

years. I have a feeling we will be making a trip to Iowa just so we

can get more shoes. I guess I am just looking for someone to tell me

everything will be alright and I am just over-worrying. At least we

have the next 6 months or so with the shoes....

[Guest guest]

Both the dr. in Rochester and Dr. Ponseti said that it was a pretty

severe case of club foot. I was not aware that whatever it is that

causes it stays with you however long depending on severity. I'm

really not sure if we even explain to the dr. what we want, that

he'll agree with us. He seemed a little stand-offish to us when we

told him that we went to see Dr. Ponseti. As you can probably tell,

I'm not too fond of the dr. That's why I send my husband!

> Hi all...Jaren just had a checkup this morning at the Mayo Clinic

and

> the dr. said his foot looks fantastic. In fact, he said that it is

> the best foot he has ever seen. Which is all great and wonderful,

> but he also said that when he grows out of the shoes he has now, he

> will not have to wear any shoes at any time any more. Jaren just

> turned 2 on April 18. I am very skeptical of not having him wear

the

> shoes anymore. The dr. guessed it would be about 6 more months.

> Isn't this too early? I didn't go to the appt, but my dh told me

the

> dr. said that children that have to wear them longer are the ones

> that don't progress as well as Jaren. I personally would feel much

> better having Jaren in the shoes at night until he is at least 3.

> Also, my dh asked approximately how many hours Jaren should be in

the

> shoes, and the dr. said they don't really have a specific number of

> hours, just that he needs to wear them at bedtime. He is in them

> real close to 10 hours a night...is this enough? I know right now

is

> the prime time for a relapse if there is going to be one, and I

don't

> want to take the shoes off in 6 months and then end up with him

> relapsing. The dr. said he doesn't have to see Jaren for 2 more

> years. I have a feeling we will be making a trip to Iowa just so

we

> can get more shoes. I guess I am just looking for someone to tell

me

> everything will be alright and I am just over-worrying. At least

we

> have the next 6 months or so with the shoes....

>

>

>

>

>

[Guest guest]

Wow Kim! Maybe you should find a different Dr. That does not sound like a good

situation. Email me anytime.

Robin

cramik412 cramik@...> wrote:

Both the dr. in Rochester and Dr. Ponseti said that it was a pretty

severe case of club foot. I was not aware that whatever it is that

causes it stays with you however long depending on severity. I'm

really not sure if we even explain to the dr. what we want, that

he'll agree with us. He seemed a little stand-offish to us when we

told him that we went to see Dr. Ponseti. As you can probably tell,

I'm not too fond of the dr. That's why I send my husband!

> Hi all...Jaren just had a checkup this morning at the Mayo Clinic

and

> the dr. said his foot looks fantastic. In fact, he said that it is

> the best foot he has ever seen. Which is all great and wonderful,

> but he also said that when he grows out of the shoes he has now, he

> will not have to wear any shoes at any time any more. Jaren just

> turned 2 on April 18. I am very skeptical of not having him wear

the

> shoes anymore. The dr. guessed it would be about 6 more months.

> Isn't this too early? I didn't go to the appt, but my dh told me

the

> dr. said that children that have to wear them longer are the ones

> that don't progress as well as Jaren. I personally would feel much

> better having Jaren in the shoes at night until he is at least 3.

> Also, my dh asked approximately how many hours Jaren should be in

the

> shoes, and the dr. said they don't really have a specific number of

> hours, just that he needs to wear them at bedtime. He is in them

> real close to 10 hours a night...is this enough? I know right now

is

> the prime time for a relapse if there is going to be one, and I

don't

> want to take the shoes off in 6 months and then end up with him

> relapsing. The dr. said he doesn't have to see Jaren for 2 more

> years. I have a feeling we will be making a trip to Iowa just so

we

> can get more shoes. I guess I am just looking for someone to tell

me

> everything will be alright and I am just over-worrying. At least

we

> have the next 6 months or so with the shoes....

>

>

>

>

>

[Guest guest]

-

You are not overworrying! Don't let your doctor take your son out of the

shoes that early! You won't have to make a trip to Iowa to get a larger pair

either. You can order them through several distributers without a

prescription and they'll send them right to your house. It doesn't matter

how well the child's foot takes to casting it is no longer safe to take them

out at age 2. You run an extremely high risk for regression by doing this.

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: What to do?

>Date: Thu, 06 May 2004 19:41:05 -0000

>

>Hi all...Jaren just had a checkup this morning at the Mayo Clinic and

>the dr. said his foot looks fantastic. In fact, he said that it is

>the best foot he has ever seen. Which is all great and wonderful,

>but he also said that when he grows out of the shoes he has now, he

>will not have to wear any shoes at any time any more. Jaren just

>turned 2 on April 18. I am very skeptical of not having him wear the

>shoes anymore. The dr. guessed it would be about 6 more months.

>Isn't this too early? I didn't go to the appt, but my dh told me the

>dr. said that children that have to wear them longer are the ones

>that don't progress as well as Jaren. I personally would feel much

>better having Jaren in the shoes at night until he is at least 3.

>Also, my dh asked approximately how many hours Jaren should be in the

>shoes, and the dr. said they don't really have a specific number of

>hours, just that he needs to wear them at bedtime. He is in them

>real close to 10 hours a night...is this enough? I know right now is

>the prime time for a relapse if there is going to be one, and I don't

>want to take the shoes off in 6 months and then end up with him

>relapsing. The dr. said he doesn't have to see Jaren for 2 more

>years. I have a feeling we will be making a trip to Iowa just so we

>can get more shoes. I guess I am just looking for someone to tell me

>everything will be alright and I am just over-worrying. At least we

>have the next 6 months or so with the shoes....

>

>

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[Guest guest]

Dear Arman,

I have lived without my colon for 2 1/2 years and for the first 6-8

months I have to admit that I cried like a baby, for this surgery is

truly life-changing. I finally got used to not having complete

plumbing and I often joke about it now; it keeps you from lamenting on

something that you cannot change.

I found that if you have a good 2 months or so to prepare for the

surgery, that helps. Do research as much as possible about what will

happen to you, I know that it's not pleasant but it helps to know what

you will face during the surgery and the recovery period. Having time

before the surgery allowed me to come up with a name for my stoma.

Whenever it misbehaves, I just call out her name and tell her to get

her act together.

If you want to speak offline, please feel to email me. There is so

much more to tell you about.

Deb

GERD, UC 1993, PSC 2005, colectomy 2005, SBO April 9, 2008, and one fat

and happy Golden Retriever

[Guest guest]

I knew 2 months in advance that I was having my colon

removed. It gave me time to pre-mourn the loss of

part of my body.

The last day I could eat, I ate pizza and my husband

and I celbrated that last hoorah!

I have to admit, when my GI said, " Cindy, my gir, it's

time to have surgery....while still groggy from the

colonoscopy, I said, " You go Doc, I'm ready. "

I made the decision and then looked forward, I never

questioned my decision - although I had friends coming

out of the woodwork thinking I made a rash decision -

but yet, I had had 16 long agonizing years to think

about that surgery.

90 % of any surgery is ATTITUDE!

Good luck!

Cindy Baudoux-Northrup

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[Guest guest]

Recurrance of PSC after transplant is less after colectomy.

Good luck with which ever you decide

Von

[Guest guest]

Arman, my colon was controlling EVERY part of my life prior to having

it removed. But it wasn't the embarrassment or pain or the 20-30 daily

trips to the bathroom (when I could get there on time) that pushed me

to have the surgery. I had two close relatives dying of cancer when i

discovered that the longer I had UC, the greater my chances of

developing colon cancer. My GI also told me that frequent

colonoscopies were no guarantee of catching cancer early. That was

enough for me. I could deal with the side effects of a bad colon, but

wasn't ready to deal with the ravages of cancer if I didn't have to.

Debbie in Seattle

UC '72, Jpouch '91, PSC Stage 2

I am thinking about having my colon removed. Have not made a decision

yet.

So for those that have had their colon removed how is the experince,

life after it? Any help would be MUCH appreciated.

Thanks

Arman

________________________________________________________________________

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