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>If you elect to use anti-thyroid drugs, you're much less likely to

>become hypothyroid.

Hi Elaine,

Thanks for the info. From what I have been reading it sounds like future

occurences of GD is likely/possible with the anti-thyroid drugs as well as

reducing the possibility of becoming hypo.

I am so greatful that my doctor has been a long time friend of our family. I

will definitely look at all of the treatment options and choose the one that is

best for me overall. I appreciate your input.

BTW, such an intersting thing about the hands and looking younger. Like I said,

I am 28, but people often think my 19 year old sister is older than I am. I have

always been annoyed with looking so young - maybe I will appreciate it some day.

Amy

Re: New Member

Hi Amy,

Welcome to the group. The symptoms of looking younger and clammy hands are

well-documented symptoms. I think it has to do with our skin staying moist

when we're hyper. Hypothyroidism is a different story entirely.

They is a slightly less fertility rate in hyperthyroidism but fertility

problems are more pronounced in hypothyroidism. Study your treatment options

carefully. If you elect to use anti-thyroid drugs, you're much less likely to

become hypothyroid. Even if you become hypothyroid after ATDs, it's generally

much later in life.

I rushed into treatment and had my thyroid gland destroyed. This I bitterly

regret since for me hypothyroidism has been far worse than hyperthyrodism.

Take your time and learn all that you can. Best to you, Elaine

See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

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>If you elect to use anti-thyroid drugs, you're much less likely to

>become hypothyroid.

Hi Elaine,

Thanks for the info. From what I have been reading it sounds like future

occurences of GD is likely/possible with the anti-thyroid drugs as well as

reducing the possibility of becoming hypo.

I am so greatful that my doctor has been a long time friend of our family. I

will definitely look at all of the treatment options and choose the one that is

best for me overall. I appreciate your input.

BTW, such an intersting thing about the hands and looking younger. Like I said,

I am 28, but people often think my 19 year old sister is older than I am. I have

always been annoyed with looking so young - maybe I will appreciate it some day.

Amy

Re: New Member

Hi Amy,

Welcome to the group. The symptoms of looking younger and clammy hands are

well-documented symptoms. I think it has to do with our skin staying moist

when we're hyper. Hypothyroidism is a different story entirely.

They is a slightly less fertility rate in hyperthyroidism but fertility

problems are more pronounced in hypothyroidism. Study your treatment options

carefully. If you elect to use anti-thyroid drugs, you're much less likely to

become hypothyroid. Even if you become hypothyroid after ATDs, it's generally

much later in life.

I rushed into treatment and had my thyroid gland destroyed. This I bitterly

regret since for me hypothyroidism has been far worse than hyperthyrodism.

Take your time and learn all that you can. Best to you, Elaine

See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

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Hi Amy,

Welcome to the group.

>>>>Thanks for the info. From what I have been reading it sounds like future

>>>>occurences of GD is likely/possible with the anti-thyroid drugs as well

>>>>as reducing the possibility of becoming hypo.<<<<

Graves Disease is for life, except I have read 2 posts of people who say

they have beat it through alternative treatments...I still wouldn't call

that a cure though.

With ATD's, yes we can come out of remission, that is why it is essential to

be on them for at least 18-24 months. BRT makes more sense to me, and you

can read about that from A's posts in the archives. It has a 95% long

term remission rate in Europe and Japan.

I have had RAI, it has done nothing but left me hypo with a lot of hypo

problems. I am now dealing with the eye disease which is worse than any

other part of this. It is permanent but it does NOTHING as far as getting

rid of the TSI antibodies that attack our thyroids and attack our eyes. I

am now on PTU to lower my antibodies and hopefully stop or reverse some of

the effects of the eye disease.

Caroline, in this group has had good success with surgery, you can read her

posts under .

Regarding fertility, read U's posts and what RAI has caused her to go

through. For successful pregnancies, read Debbie R, I and I know

there are others, but can't remember.

Please, take your time in choosing your treatment, don't rush into it.

Surgery and RAI are permanent, once done your stuck with them.

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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Hi Amy,

Welcome to the group.

>>>>Thanks for the info. From what I have been reading it sounds like future

>>>>occurences of GD is likely/possible with the anti-thyroid drugs as well

>>>>as reducing the possibility of becoming hypo.<<<<

Graves Disease is for life, except I have read 2 posts of people who say

they have beat it through alternative treatments...I still wouldn't call

that a cure though.

With ATD's, yes we can come out of remission, that is why it is essential to

be on them for at least 18-24 months. BRT makes more sense to me, and you

can read about that from A's posts in the archives. It has a 95% long

term remission rate in Europe and Japan.

I have had RAI, it has done nothing but left me hypo with a lot of hypo

problems. I am now dealing with the eye disease which is worse than any

other part of this. It is permanent but it does NOTHING as far as getting

rid of the TSI antibodies that attack our thyroids and attack our eyes. I

am now on PTU to lower my antibodies and hopefully stop or reverse some of

the effects of the eye disease.

Caroline, in this group has had good success with surgery, you can read her

posts under .

Regarding fertility, read U's posts and what RAI has caused her to go

through. For successful pregnancies, read Debbie R, I and I know

there are others, but can't remember.

Please, take your time in choosing your treatment, don't rush into it.

Surgery and RAI are permanent, once done your stuck with them.

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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Hi Amy,

Welcome to the group.

>>>>Thanks for the info. From what I have been reading it sounds like future

>>>>occurences of GD is likely/possible with the anti-thyroid drugs as well

>>>>as reducing the possibility of becoming hypo.<<<<

Graves Disease is for life, except I have read 2 posts of people who say

they have beat it through alternative treatments...I still wouldn't call

that a cure though.

With ATD's, yes we can come out of remission, that is why it is essential to

be on them for at least 18-24 months. BRT makes more sense to me, and you

can read about that from A's posts in the archives. It has a 95% long

term remission rate in Europe and Japan.

I have had RAI, it has done nothing but left me hypo with a lot of hypo

problems. I am now dealing with the eye disease which is worse than any

other part of this. It is permanent but it does NOTHING as far as getting

rid of the TSI antibodies that attack our thyroids and attack our eyes. I

am now on PTU to lower my antibodies and hopefully stop or reverse some of

the effects of the eye disease.

Caroline, in this group has had good success with surgery, you can read her

posts under .

Regarding fertility, read U's posts and what RAI has caused her to go

through. For successful pregnancies, read Debbie R, I and I know

there are others, but can't remember.

Please, take your time in choosing your treatment, don't rush into it.

Surgery and RAI are permanent, once done your stuck with them.

Take care,

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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Well, I just got off the phone with my doctor regarding my blood test results. I

am pregnant. Wow. This is kind of a surprise. We have been trying for about 6

months.

My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in high

risk pregnancies.

Congratulations on your pregnancy Amy D!

Amy J.

RE: New Member

Welcome Amy. As far as the getting pg while its active being difficult. I

would think you would want to wait until you get it under control. I had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am 4

months pg :)

Amy

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Well, I just got off the phone with my doctor regarding my blood test results. I

am pregnant. Wow. This is kind of a surprise. We have been trying for about 6

months.

My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in high

risk pregnancies.

Congratulations on your pregnancy Amy D!

Amy J.

RE: New Member

Welcome Amy. As far as the getting pg while its active being difficult. I

would think you would want to wait until you get it under control. I had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am 4

months pg :)

Amy

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Guest guest

Welcome Amy. As far as the getting pg while its active being difficult. I

would think you would want to wait until you get it under control. I had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am 4

months pg :)

Amy

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Guest guest

Welcome Amy. As far as the getting pg while its active being difficult. I

would think you would want to wait until you get it under control. I had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am 4

months pg :)

Amy

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Guest guest

Welcome Amy. As far as the getting pg while its active being difficult. I

would think you would want to wait until you get it under control. I had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am 4

months pg :)

Amy

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Guest guest

Congrats :) HEres to a happy healthy 9 months. If you get morning sickenss

check out www.relief-band.com its fabulous!

Amy

Re: New Member

Well, I just got off the phone with my doctor regarding my blood test

results. I am pregnant. Wow. This is kind of a surprise. We have been trying

for about 6 months.

My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in

high risk pregnancies.

Congratulations on your pregnancy Amy D!

Amy J.

RE: New Member

Welcome Amy. As far as the getting pg while its active being difficult.

I

would think you would want to wait until you get it under control. I

had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am

4

months pg :)

Amy

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Guest guest

Congrats :) HEres to a happy healthy 9 months. If you get morning sickenss

check out www.relief-band.com its fabulous!

Amy

Re: New Member

Well, I just got off the phone with my doctor regarding my blood test

results. I am pregnant. Wow. This is kind of a surprise. We have been trying

for about 6 months.

My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in

high risk pregnancies.

Congratulations on your pregnancy Amy D!

Amy J.

RE: New Member

Welcome Amy. As far as the getting pg while its active being difficult.

I

would think you would want to wait until you get it under control. I

had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am

4

months pg :)

Amy

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Guest guest

Congrats :) HEres to a happy healthy 9 months. If you get morning sickenss

check out www.relief-band.com its fabulous!

Amy

Re: New Member

Well, I just got off the phone with my doctor regarding my blood test

results. I am pregnant. Wow. This is kind of a surprise. We have been trying

for about 6 months.

My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in

high risk pregnancies.

Congratulations on your pregnancy Amy D!

Amy J.

RE: New Member

Welcome Amy. As far as the getting pg while its active being difficult.

I

would think you would want to wait until you get it under control. I

had +

antibodies and I was able to get pg in 6 months through temping and

measuring CM. The doc had just started a fertility workup and here I am

4

months pg :)

Amy

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Guest guest

Welcome Amy

I hope you continue to read and be a part of the group here. Being informed is

the best you can do to help yourself make good decisions regarding this illness.

I am one the lucky ones to have fallen pregnant after diagnosis and treatment. I

now had beautiful baby boy who is 4 months old today. You can find lots about my

treatment and pregnancy under starting about sept 2000.

All the best

Caroline

Amy wrote:

> Hello,

>

> My name is Amy. I am 28 years old and have been married for a couple of years.

I went to the doctor last week for what I now know are many of the symptoms of

Graves Disease. I am waiting to hear from him about my blood work tomorrow and

will be doing the sonogram test and iodine uptake early next week. My doctor is

pretty certain, the tests are just to confirm that I do have it.

>

> So, since then I have been doing a lot of reading online. I have read some

pretty interesting things, including an article in a nursing journal stating

that some studies have shown that people who have Graves Disease often have

similar characteristics - clamy hands and look younger than he/she is. Have any

of you ever heard of this before?

>

> Also, I have read that it is very difficult to get pregnant while Graves

Disease is active. What do you all know about this?

>

> I just wanted to introduce myself and say hello. I have been weeding my way

through the archives on the list. Wow! You guys talk a lot! I am also on a list

on Yahoo for a motorcycle organization I belong to. I thought we talked a lot on

there!

>

> I look forward to reading and participating in discussions on the list.

>

> Amy

>

>

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Guest guest

Welcome Amy

I hope you continue to read and be a part of the group here. Being informed is

the best you can do to help yourself make good decisions regarding this illness.

I am one the lucky ones to have fallen pregnant after diagnosis and treatment. I

now had beautiful baby boy who is 4 months old today. You can find lots about my

treatment and pregnancy under starting about sept 2000.

All the best

Caroline

Amy wrote:

> Hello,

>

> My name is Amy. I am 28 years old and have been married for a couple of years.

I went to the doctor last week for what I now know are many of the symptoms of

Graves Disease. I am waiting to hear from him about my blood work tomorrow and

will be doing the sonogram test and iodine uptake early next week. My doctor is

pretty certain, the tests are just to confirm that I do have it.

>

> So, since then I have been doing a lot of reading online. I have read some

pretty interesting things, including an article in a nursing journal stating

that some studies have shown that people who have Graves Disease often have

similar characteristics - clamy hands and look younger than he/she is. Have any

of you ever heard of this before?

>

> Also, I have read that it is very difficult to get pregnant while Graves

Disease is active. What do you all know about this?

>

> I just wanted to introduce myself and say hello. I have been weeding my way

through the archives on the list. Wow! You guys talk a lot! I am also on a list

on Yahoo for a motorcycle organization I belong to. I thought we talked a lot on

there!

>

> I look forward to reading and participating in discussions on the list.

>

> Amy

>

>

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Guest guest

Welcome Amy

I hope you continue to read and be a part of the group here. Being informed is

the best you can do to help yourself make good decisions regarding this illness.

I am one the lucky ones to have fallen pregnant after diagnosis and treatment. I

now had beautiful baby boy who is 4 months old today. You can find lots about my

treatment and pregnancy under starting about sept 2000.

All the best

Caroline

Amy wrote:

> Hello,

>

> My name is Amy. I am 28 years old and have been married for a couple of years.

I went to the doctor last week for what I now know are many of the symptoms of

Graves Disease. I am waiting to hear from him about my blood work tomorrow and

will be doing the sonogram test and iodine uptake early next week. My doctor is

pretty certain, the tests are just to confirm that I do have it.

>

> So, since then I have been doing a lot of reading online. I have read some

pretty interesting things, including an article in a nursing journal stating

that some studies have shown that people who have Graves Disease often have

similar characteristics - clamy hands and look younger than he/she is. Have any

of you ever heard of this before?

>

> Also, I have read that it is very difficult to get pregnant while Graves

Disease is active. What do you all know about this?

>

> I just wanted to introduce myself and say hello. I have been weeding my way

through the archives on the list. Wow! You guys talk a lot! I am also on a list

on Yahoo for a motorcycle organization I belong to. I thought we talked a lot on

there!

>

> I look forward to reading and participating in discussions on the list.

>

> Amy

>

>

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Dear Amy

I also have looked younger than my age. When I was in my 20's I hated it. I felt

people didn't take me seriously. Now I love it as people can't belive I have a

child almost 19 years old and I now a 4 month old as well. Like you my younger

sister

looks older, a fact of life I like to 'stir' her up with quite often : )

Cheers

Caroline

Amy wrote:

> >If you elect to use anti-thyroid drugs, you're much less likely to

> >become hypothyroid.

>

> Hi Elaine,

>

> Thanks for the info. From what I have been reading it sounds like future

occurences of GD is likely/possible with the anti-thyroid drugs as well as

reducing the possibility of becoming hypo.

>

> I am so greatful that my doctor has been a long time friend of our family. I

will definitely look at all of the treatment options and choose the one that is

best for me overall. I appreciate your input.

>

> BTW, such an intersting thing about the hands and looking younger. Like I

said, I am 28, but people often think my 19 year old sister is older than I am.

I have always been annoyed with looking so young - maybe I will appreciate it

some day.

>

> Amy

> Re: New Member

>

> Hi Amy,

> Welcome to the group. The symptoms of looking younger and clammy hands are

> well-documented symptoms. I think it has to do with our skin staying moist

> when we're hyper. Hypothyroidism is a different story entirely.

> They is a slightly less fertility rate in hyperthyroidism but fertility

> problems are more pronounced in hypothyroidism. Study your treatment options

> carefully. If you elect to use anti-thyroid drugs, you're much less likely

to

> become hypothyroid. Even if you become hypothyroid after ATDs, it's

generally

> much later in life.

> I rushed into treatment and had my thyroid gland destroyed. This I bitterly

> regret since for me hypothyroidism has been far worse than hyperthyrodism.

> Take your time and learn all that you can. Best to you, Elaine

> See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

>

>

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Dear Amy

I also have looked younger than my age. When I was in my 20's I hated it. I felt

people didn't take me seriously. Now I love it as people can't belive I have a

child almost 19 years old and I now a 4 month old as well. Like you my younger

sister

looks older, a fact of life I like to 'stir' her up with quite often : )

Cheers

Caroline

Amy wrote:

> >If you elect to use anti-thyroid drugs, you're much less likely to

> >become hypothyroid.

>

> Hi Elaine,

>

> Thanks for the info. From what I have been reading it sounds like future

occurences of GD is likely/possible with the anti-thyroid drugs as well as

reducing the possibility of becoming hypo.

>

> I am so greatful that my doctor has been a long time friend of our family. I

will definitely look at all of the treatment options and choose the one that is

best for me overall. I appreciate your input.

>

> BTW, such an intersting thing about the hands and looking younger. Like I

said, I am 28, but people often think my 19 year old sister is older than I am.

I have always been annoyed with looking so young - maybe I will appreciate it

some day.

>

> Amy

> Re: New Member

>

> Hi Amy,

> Welcome to the group. The symptoms of looking younger and clammy hands are

> well-documented symptoms. I think it has to do with our skin staying moist

> when we're hyper. Hypothyroidism is a different story entirely.

> They is a slightly less fertility rate in hyperthyroidism but fertility

> problems are more pronounced in hypothyroidism. Study your treatment options

> carefully. If you elect to use anti-thyroid drugs, you're much less likely

to

> become hypothyroid. Even if you become hypothyroid after ATDs, it's

generally

> much later in life.

> I rushed into treatment and had my thyroid gland destroyed. This I bitterly

> regret since for me hypothyroidism has been far worse than hyperthyrodism.

> Take your time and learn all that you can. Best to you, Elaine

> See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

>

>

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Congratulations Amy J and Amy D

This is going to confuse the heck out of me with you both being pregnant, so

I'll apologise now for when I get you guys mixed up!!!

Cheers

Caroline

Amy wrote:

> Well, I just got off the phone with my doctor regarding my blood test results.

I am pregnant. Wow. This is kind of a surprise. We have been trying for about 6

months.

>

> My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in high

risk pregnancies.

>

> Congratulations on your pregnancy Amy D!

>

> Amy J.

> RE: New Member

>

> Welcome Amy. As far as the getting pg while its active being difficult. I

> would think you would want to wait until you get it under control. I had +

> antibodies and I was able to get pg in 6 months through temping and

> measuring CM. The doc had just started a fertility workup and here I am 4

> months pg :)

>

> Amy

>

>

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Guest guest

Congratulations Amy J and Amy D

This is going to confuse the heck out of me with you both being pregnant, so

I'll apologise now for when I get you guys mixed up!!!

Cheers

Caroline

Amy wrote:

> Well, I just got off the phone with my doctor regarding my blood test results.

I am pregnant. Wow. This is kind of a surprise. We have been trying for about 6

months.

>

> My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in high

risk pregnancies.

>

> Congratulations on your pregnancy Amy D!

>

> Amy J.

> RE: New Member

>

> Welcome Amy. As far as the getting pg while its active being difficult. I

> would think you would want to wait until you get it under control. I had +

> antibodies and I was able to get pg in 6 months through temping and

> measuring CM. The doc had just started a fertility workup and here I am 4

> months pg :)

>

> Amy

>

>

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Guest guest

Congratulations Amy J and Amy D

This is going to confuse the heck out of me with you both being pregnant, so

I'll apologise now for when I get you guys mixed up!!!

Cheers

Caroline

Amy wrote:

> Well, I just got off the phone with my doctor regarding my blood test results.

I am pregnant. Wow. This is kind of a surprise. We have been trying for about 6

months.

>

> My doctor made an appointment with an endo for me for next week. He also

suggested that I talk to by OB GYN about finding an OB that specializes in high

risk pregnancies.

>

> Congratulations on your pregnancy Amy D!

>

> Amy J.

> RE: New Member

>

> Welcome Amy. As far as the getting pg while its active being difficult. I

> would think you would want to wait until you get it under control. I had +

> antibodies and I was able to get pg in 6 months through temping and

> measuring CM. The doc had just started a fertility workup and here I am 4

> months pg :)

>

> Amy

>

>

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,

Sorry to hear about all your baby has gone through. We live in

Savannah GA and it's about 1200 mile from Iowa. We went when my son

was 5 and 1/2 months old and Dr. Ponseti corrected his bi-lateral CF

with 6 cast and tenotimes on both feet. We had been to

several " Good " Dr.'s but never felt like surgery was our only option.

Our trip to Iowa was not cheap, but worth every penny!!!!!!! The

McDonal House is great! And is 10.00- 15.00 a night. I went

with my 3 children and everyone was so wonderful to us. They have a

play group 3 days a week that My daughters went to while I went to

Calebs casting appointments. They have a shuttle service to the

Hospital if you need transportation, there is a very nice play room,

playground ect... There is alot to do for children at the hospital

also. Playground, reading group ect..... As far as meals, you can

buy groceries and cook if you don't want to eat out, and sometimes

people donate meals to the RMH. We were there for 1 month and then 2

days in November, we meet so many people that we will never forget!

There was another ponseti baby there that was on the same course of

treatment as Caleb and it was so nice to have someone to talk to! We

scheduled appointments back to back and they even had their

tenotomies on the same day so we waited and worried together.

I know it is a hard decison to make, but I know that getting Caleb to

Dr. Ponseti himself was the best thing we could have ever done!!!!

Our insurance is not paying as well as if we had had surgery locally,

but I would rather spend that money giving my son the best chance for

Pain Free feet later in life than on a car or furniture or something

we won't care about oneday!

We will be praying for you and if I can help you in anyway let me

know!!!

and Caleb 3-31-01

-- In nosurgery4clubfoot@y..., " boothejennifer " <boothejennifer@h...>

wrote:

> Hi all!

> I have a daughter (Grace) that was born August 23rd with

> bilateral clubfeet. She was also born 2 months premature. She was

> casted for the first time with below the knee casts within her

first

> week of life. She was treated by a military Dr ...a pediatrist

> specializing in ankle reconstructive surgery until she was 4 months

> old. He SUCKED, but I was not able to get a referral off post and

> was not sure of my options.

> I researched for a couple weeks because I did not want her

> previous Dr doing any kind of surgery on her and also he was not

> casting her correctly...we had all kinds of problems. I was able

to

> find a Dr about 2 hours from my home that was on Dr Ponseti's list

> and we have been seeing him for 3 weeks, his name is Dr .

> The first two casts made a ton of improvement, and we thought

for

> sure that everything was going great. But, after the second cast

> was removed Dr decided that " her heel would need

surgery " ,

> and so he performed a tenotomy to see if he could get enough

> correction with this procedure alone. After doing the tenotomy on

> one foot he decided that she would need some other surgery to

> correct the heel tightness.

> I have posted on another board about this particular

> situation...I was not comfortable with the Drs decision and the

fact

> that after only 2 cast he did the procedure. So, I have emailed Dr

> Ponseti and asked his opinion. He agrees that the tenotomy is

> usually done after 4-5 casts, and as many as 7-9.

> I am very frustrated with my daughters treatment and am

> considering going to Iowa after the 6th. Has anyone else had any

> experience like this?? What are the expenses involved with going

to

> Iowa from 900 miles away and staying at the Mc house?

> I also have a 5 year old that I would have to drag along...is this

> feasible??

> Sorry to ramble...I am at my wits end, we have had 3 Drs so far

> and my daughter is 5 months now...she is small though because her

> prematurity and I was told that she is more like treating a 3 month

> old. What do you all think??

> Also, I had bilateral clubfeet and was treated with surgery in

> 1977 and over all, my feet are okay, but do hurt after a long

day!!

> Thanks for listening,

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Guest guest

,

Sorry to hear about all your baby has gone through. We live in

Savannah GA and it's about 1200 mile from Iowa. We went when my son

was 5 and 1/2 months old and Dr. Ponseti corrected his bi-lateral CF

with 6 cast and tenotimes on both feet. We had been to

several " Good " Dr.'s but never felt like surgery was our only option.

Our trip to Iowa was not cheap, but worth every penny!!!!!!! The

McDonal House is great! And is 10.00- 15.00 a night. I went

with my 3 children and everyone was so wonderful to us. They have a

play group 3 days a week that My daughters went to while I went to

Calebs casting appointments. They have a shuttle service to the

Hospital if you need transportation, there is a very nice play room,

playground ect... There is alot to do for children at the hospital

also. Playground, reading group ect..... As far as meals, you can

buy groceries and cook if you don't want to eat out, and sometimes

people donate meals to the RMH. We were there for 1 month and then 2

days in November, we meet so many people that we will never forget!

There was another ponseti baby there that was on the same course of

treatment as Caleb and it was so nice to have someone to talk to! We

scheduled appointments back to back and they even had their

tenotomies on the same day so we waited and worried together.

I know it is a hard decison to make, but I know that getting Caleb to

Dr. Ponseti himself was the best thing we could have ever done!!!!

Our insurance is not paying as well as if we had had surgery locally,

but I would rather spend that money giving my son the best chance for

Pain Free feet later in life than on a car or furniture or something

we won't care about oneday!

We will be praying for you and if I can help you in anyway let me

know!!!

and Caleb 3-31-01

-- In nosurgery4clubfoot@y..., " boothejennifer " <boothejennifer@h...>

wrote:

> Hi all!

> I have a daughter (Grace) that was born August 23rd with

> bilateral clubfeet. She was also born 2 months premature. She was

> casted for the first time with below the knee casts within her

first

> week of life. She was treated by a military Dr ...a pediatrist

> specializing in ankle reconstructive surgery until she was 4 months

> old. He SUCKED, but I was not able to get a referral off post and

> was not sure of my options.

> I researched for a couple weeks because I did not want her

> previous Dr doing any kind of surgery on her and also he was not

> casting her correctly...we had all kinds of problems. I was able

to

> find a Dr about 2 hours from my home that was on Dr Ponseti's list

> and we have been seeing him for 3 weeks, his name is Dr .

> The first two casts made a ton of improvement, and we thought

for

> sure that everything was going great. But, after the second cast

> was removed Dr decided that " her heel would need

surgery " ,

> and so he performed a tenotomy to see if he could get enough

> correction with this procedure alone. After doing the tenotomy on

> one foot he decided that she would need some other surgery to

> correct the heel tightness.

> I have posted on another board about this particular

> situation...I was not comfortable with the Drs decision and the

fact

> that after only 2 cast he did the procedure. So, I have emailed Dr

> Ponseti and asked his opinion. He agrees that the tenotomy is

> usually done after 4-5 casts, and as many as 7-9.

> I am very frustrated with my daughters treatment and am

> considering going to Iowa after the 6th. Has anyone else had any

> experience like this?? What are the expenses involved with going

to

> Iowa from 900 miles away and staying at the Mc house?

> I also have a 5 year old that I would have to drag along...is this

> feasible??

> Sorry to ramble...I am at my wits end, we have had 3 Drs so far

> and my daughter is 5 months now...she is small though because her

> prematurity and I was told that she is more like treating a 3 month

> old. What do you all think??

> Also, I had bilateral clubfeet and was treated with surgery in

> 1977 and over all, my feet are okay, but do hurt after a long

day!!

> Thanks for listening,

Share this post


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Guest guest

,

Sorry to hear about all your baby has gone through. We live in

Savannah GA and it's about 1200 mile from Iowa. We went when my son

was 5 and 1/2 months old and Dr. Ponseti corrected his bi-lateral CF

with 6 cast and tenotimes on both feet. We had been to

several " Good " Dr.'s but never felt like surgery was our only option.

Our trip to Iowa was not cheap, but worth every penny!!!!!!! The

McDonal House is great! And is 10.00- 15.00 a night. I went

with my 3 children and everyone was so wonderful to us. They have a

play group 3 days a week that My daughters went to while I went to

Calebs casting appointments. They have a shuttle service to the

Hospital if you need transportation, there is a very nice play room,

playground ect... There is alot to do for children at the hospital

also. Playground, reading group ect..... As far as meals, you can

buy groceries and cook if you don't want to eat out, and sometimes

people donate meals to the RMH. We were there for 1 month and then 2

days in November, we meet so many people that we will never forget!

There was another ponseti baby there that was on the same course of

treatment as Caleb and it was so nice to have someone to talk to! We

scheduled appointments back to back and they even had their

tenotomies on the same day so we waited and worried together.

I know it is a hard decison to make, but I know that getting Caleb to

Dr. Ponseti himself was the best thing we could have ever done!!!!

Our insurance is not paying as well as if we had had surgery locally,

but I would rather spend that money giving my son the best chance for

Pain Free feet later in life than on a car or furniture or something

we won't care about oneday!

We will be praying for you and if I can help you in anyway let me

know!!!

and Caleb 3-31-01

-- In nosurgery4clubfoot@y..., " boothejennifer " <boothejennifer@h...>

wrote:

> Hi all!

> I have a daughter (Grace) that was born August 23rd with

> bilateral clubfeet. She was also born 2 months premature. She was

> casted for the first time with below the knee casts within her

first

> week of life. She was treated by a military Dr ...a pediatrist

> specializing in ankle reconstructive surgery until she was 4 months

> old. He SUCKED, but I was not able to get a referral off post and

> was not sure of my options.

> I researched for a couple weeks because I did not want her

> previous Dr doing any kind of surgery on her and also he was not

> casting her correctly...we had all kinds of problems. I was able

to

> find a Dr about 2 hours from my home that was on Dr Ponseti's list

> and we have been seeing him for 3 weeks, his name is Dr .

> The first two casts made a ton of improvement, and we thought

for

> sure that everything was going great. But, after the second cast

> was removed Dr decided that " her heel would need

surgery " ,

> and so he performed a tenotomy to see if he could get enough

> correction with this procedure alone. After doing the tenotomy on

> one foot he decided that she would need some other surgery to

> correct the heel tightness.

> I have posted on another board about this particular

> situation...I was not comfortable with the Drs decision and the

fact

> that after only 2 cast he did the procedure. So, I have emailed Dr

> Ponseti and asked his opinion. He agrees that the tenotomy is

> usually done after 4-5 casts, and as many as 7-9.

> I am very frustrated with my daughters treatment and am

> considering going to Iowa after the 6th. Has anyone else had any

> experience like this?? What are the expenses involved with going

to

> Iowa from 900 miles away and staying at the Mc house?

> I also have a 5 year old that I would have to drag along...is this

> feasible??

> Sorry to ramble...I am at my wits end, we have had 3 Drs so far

> and my daughter is 5 months now...she is small though because her

> prematurity and I was told that she is more like treating a 3 month

> old. What do you all think??

> Also, I had bilateral clubfeet and was treated with surgery in

> 1977 and over all, my feet are okay, but do hurt after a long

day!!

> Thanks for listening,

Share this post


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Guest guest

,

Welcome to you and your family. I'm sorry that your experience so far

has been so rough. If you feel so uncomfortable with Dr. , I

would say come to Iowa as soon as you can. I can somewhat relate about

the short casts - my son Jakob had a set put on the day after he was

born which rubbed sores behind his knees. When we went to get that set

removed, we were referred to Dr. Weinstein who is also at the Uof Iowa

with Dr. Ponseti (we live in Iowa City which is how we got the referral

so easily).

As for the expense, I can't offer any advise on that. However, if you

need any suggestions on things to do in Iowa City, feel free to ask.

boothejennifer wrote:

> Hi all!

> I have a daughter (Grace) that was born August 23rd with

> bilateral clubfeet. She was also born 2 months premature. She was

> casted for the first time with below the knee casts within her first

> week of life. She was treated by a military Dr ...a pediatrist

> specializing in ankle reconstructive surgery until she was 4 months

> old. He SUCKED, but I was not able to get a referral off post and

> was not sure of my options.

> I researched for a couple weeks because I did not want her

> previous Dr doing any kind of surgery on her and also he was not

> casting her correctly...we had all kinds of problems. I was able to

> find a Dr about 2 hours from my home that was on Dr Ponseti's list

> and we have been seeing him for 3 weeks, his name is Dr .

> The first two casts made a ton of improvement, and we thought for

> sure that everything was going great. But, after the second cast

> was removed Dr decided that " her heel would need surgery " ,

> and so he performed a tenotomy to see if he could get enough

> correction with this procedure alone. After doing the tenotomy on

> one foot he decided that she would need some other surgery to

> correct the heel tightness.

> I have posted on another board about this particular

> situation...I was not comfortable with the Drs decision and the fact

> that after only 2 cast he did the procedure. So, I have emailed Dr

> Ponseti and asked his opinion. He agrees that the tenotomy is

> usually done after 4-5 casts, and as many as 7-9.

> I am very frustrated with my daughters treatment and am

> considering going to Iowa after the 6th. Has anyone else had any

> experience like this?? What are the expenses involved with going to

> Iowa from 900 miles away and staying at the Mc house?

> I also have a 5 year old that I would have to drag along...is this

> feasible??

> Sorry to ramble...I am at my wits end, we have had 3 Drs so far

> and my daughter is 5 months now...she is small though because her

> prematurity and I was told that she is more like treating a 3 month

> old. What do you all think??

> Also, I had bilateral clubfeet and was treated with surgery in

> 1977 and over all, my feet are okay, but do hurt after a long day!!

> Thanks for listening,

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