Re: (Fwd) teenager with graves

[Guest guest]

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

help with the

> daily changes. Pennie

Welcome to the list Pennie, glad you found us. We have a couple of

moms on the list with teens who have Graves so you have someone

who can fill you in on what to expect. In the meantime, feel free to

peruse the archives, esp the last couple of weeks.

What treatment is your daughter on?

take care :-)

C

[Guest guest]

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

help with the

> daily changes. Pennie

Welcome to the list Pennie, glad you found us. We have a couple of

moms on the list with teens who have Graves so you have someone

who can fill you in on what to expect. In the meantime, feel free to

peruse the archives, esp the last couple of weeks.

What treatment is your daughter on?

take care :-)

C

[Guest guest]

In a message dated 3/26/2002 11:13:15 PM Central Standard Time,

bjcraw@... writes:

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

> help with the daily changes. Pennie

Hi, Pennie,

I'm called Amy's Pam here since my daughter, Amy, was recently diagnosed with

Graves' and there at least two other Pams on this board.

Amy turned 14 a few days ago and was diagnosed in early February. She's

currently on 10 mg. of Tapazole, twice a day, after negatively reacting to

PTU. Her levels are starting to improve and we're hoping this will help

bring her into remission at some point.

She was cranky and emotional for quite a long time before we realized that

something was physically wrong with her. She dropped 18 pounds in January

and was constantly fatigued, also going from euphoria to tears in a matter of

minutes. School work deteriorated significantly and we're still trying to

get back in the groove with that part of her life.

We saw an endo in February who wanted her to have RAI immediately, but we are

opposed to this invasive, risky treatment. We're also utilizing a

nutritional science center four hours from our home to complement her

treatment and attempt to help her obtain optimal health.

Write anytime. I spent several weeks trying to find other moms with

daughters suffering from Graves'. Let me know what treatment you plan to

use, ask questions, and share whatever you feel comfortable with. It's a

tough road to walk, for the entire family, but this is a great group.

And, if no one has told you yet, your best written source is Elaine 's

book, Graves' Disease, available at libraries and any good bookstore. Worth

several reads to grasp what's going on here.

Amy's Pam

[Guest guest]

In a message dated 3/26/2002 11:13:15 PM Central Standard Time,

bjcraw@... writes:

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

> help with the daily changes. Pennie

Hi, Pennie,

I'm called Amy's Pam here since my daughter, Amy, was recently diagnosed with

Graves' and there at least two other Pams on this board.

Amy turned 14 a few days ago and was diagnosed in early February. She's

currently on 10 mg. of Tapazole, twice a day, after negatively reacting to

PTU. Her levels are starting to improve and we're hoping this will help

bring her into remission at some point.

She was cranky and emotional for quite a long time before we realized that

something was physically wrong with her. She dropped 18 pounds in January

and was constantly fatigued, also going from euphoria to tears in a matter of

minutes. School work deteriorated significantly and we're still trying to

get back in the groove with that part of her life.

We saw an endo in February who wanted her to have RAI immediately, but we are

opposed to this invasive, risky treatment. We're also utilizing a

nutritional science center four hours from our home to complement her

treatment and attempt to help her obtain optimal health.

Write anytime. I spent several weeks trying to find other moms with

daughters suffering from Graves'. Let me know what treatment you plan to

use, ask questions, and share whatever you feel comfortable with. It's a

tough road to walk, for the entire family, but this is a great group.

And, if no one has told you yet, your best written source is Elaine 's

book, Graves' Disease, available at libraries and any good bookstore. Worth

several reads to grasp what's going on here.

Amy's Pam

[Guest guest]

In a message dated 3/26/2002 11:13:15 PM Central Standard Time,

bjcraw@... writes:

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

> help with the daily changes. Pennie

Hi, Pennie,

I'm called Amy's Pam here since my daughter, Amy, was recently diagnosed with

Graves' and there at least two other Pams on this board.

Amy turned 14 a few days ago and was diagnosed in early February. She's

currently on 10 mg. of Tapazole, twice a day, after negatively reacting to

PTU. Her levels are starting to improve and we're hoping this will help

bring her into remission at some point.

She was cranky and emotional for quite a long time before we realized that

something was physically wrong with her. She dropped 18 pounds in January

and was constantly fatigued, also going from euphoria to tears in a matter of

minutes. School work deteriorated significantly and we're still trying to

get back in the groove with that part of her life.

We saw an endo in February who wanted her to have RAI immediately, but we are

opposed to this invasive, risky treatment. We're also utilizing a

nutritional science center four hours from our home to complement her

treatment and attempt to help her obtain optimal health.

Write anytime. I spent several weeks trying to find other moms with

daughters suffering from Graves'. Let me know what treatment you plan to

use, ask questions, and share whatever you feel comfortable with. It's a

tough road to walk, for the entire family, but this is a great group.

And, if no one has told you yet, your best written source is Elaine 's

book, Graves' Disease, available at libraries and any good bookstore. Worth

several reads to grasp what's going on here.

Amy's Pam

[Guest guest]

>

> ------- Forwarded message follows -------

> Date sent: Tue, 26 Mar 2002 19:44:11 -0800 (PST)

> From: pennie cherry <seemore38053@y...>

> Subject: teenager with graves

> To: graves_support-owner@y...

>

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to

turn for help with the daily changes. Pennie

Pennie - Hello and welcome to this wonderful group. They have been

helping me through the process with my 13 year old daughter, who was

diagnosed on Monday with Graves! What treatment is your daughter

on? And, I know those with more experience will have wisdom for you

on the daily changes. I know that right now with my , each day

is a new challenge as she absorbs all the information about her

condition while desperately trying to be " just like everyone else. "

So, some days she is cranky, some euphoric, some achy and weepy and

some days she feels like superwoman! I'll be watching for your

posts, but what has helped me the most in here is the knowledge that

you are not alone and we are all pulling for you and your daughter.

Hang in there! mary

[Guest guest]

>

> ------- Forwarded message follows -------

> Date sent: Tue, 26 Mar 2002 19:44:11 -0800 (PST)

> From: pennie cherry <seemore38053@y...>

> Subject: teenager with graves

> To: graves_support-owner@y...

>

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to

turn for help with the daily changes. Pennie

Pennie - Hello and welcome to this wonderful group. They have been

helping me through the process with my 13 year old daughter, who was

diagnosed on Monday with Graves! What treatment is your daughter

on? And, I know those with more experience will have wisdom for you

on the daily changes. I know that right now with my , each day

is a new challenge as she absorbs all the information about her

condition while desperately trying to be " just like everyone else. "

So, some days she is cranky, some euphoric, some achy and weepy and

some days she feels like superwoman! I'll be watching for your

posts, but what has helped me the most in here is the knowledge that

you are not alone and we are all pulling for you and your daughter.

Hang in there! mary

[Guest guest]

>

> ------- Forwarded message follows -------

> Date sent: Tue, 26 Mar 2002 19:44:11 -0800 (PST)

> From: pennie cherry <seemore38053@y...>

> Subject: teenager with graves

> To: graves_support-owner@y...

>

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to

turn for help with the daily changes. Pennie

Pennie - Hello and welcome to this wonderful group. They have been

helping me through the process with my 13 year old daughter, who was

diagnosed on Monday with Graves! What treatment is your daughter

on? And, I know those with more experience will have wisdom for you

on the daily changes. I know that right now with my , each day

is a new challenge as she absorbs all the information about her

condition while desperately trying to be " just like everyone else. "

So, some days she is cranky, some euphoric, some achy and weepy and

some days she feels like superwoman! I'll be watching for your

posts, but what has helped me the most in here is the knowledge that

you are not alone and we are all pulling for you and your daughter.

Hang in there! mary

[Guest guest]

In a message dated 3/29/2002 11:22:52 AM Central Standard Time,

seemore38053@... writes:

> kaitlyn started off with 240mg inderal and 50 mg tapazole. she is now

> off beta blockers and on 5 mg of tapazole. the e endo is going to wean her

> off and see if she goes back into a thyroid storm. if she does he says it

> would be time to remove the thyroid. he recommends rai. her thyroid is

> continuing to grow. about 1/2 inch every week. dr says this is normal and

> it will get bigger. im trying to get a second opinion from another peds

> endo. we have 2 in the area. not much choices. she has missed alot of

> school. we had a tutor for a couple of months.then she went back half

> days,,,now we just take 1 day a t a time thank you for listening i am

> numb with what to do. Pennie

Pennie,

I wish I could offer more wisdom, but I would get a second and even a third

opinion before electing for RAI. It may be that's what she needs; but it may

not and I would really hesitate to take that action with just one doctor's

advice. Has your doc considered surgery?

I'm forwarding a story to you from a man who went through Graves' treatment

without RAI. He is pro-medicine, anti-nutrition, so you'll have to balance

all that out. However, it's always nice to hear about success stories.

About school. We homeschool, and have had to do the same as you -- take one

day at a time. Amy's health is more important than schoolwork at this point

and we can always make up what we've lost. Additionally, the stress to the

rest of us makes it necessary for us to dial back while we get a handle on

this.

While Amy's thyroid numbers are coming down nicely on Tapazole, we're

concerned that her endo is seeing signs of some other illness or something

that isn't Graves'. Don't know yet what to do, but wait.

Could you drive out of state for another endo? We were willing to do that,

but found one here. We have driven 4 hours away from home for the

nutritional approach we're seeking to complement treatment.

My thoughts and prayers are with you. Write anytime. I know how hard this

is.

Amy's Pam

[Guest guest]

In a message dated 3/29/2002 11:22:52 AM Central Standard Time,

seemore38053@... writes:

> kaitlyn started off with 240mg inderal and 50 mg tapazole. she is now

> off beta blockers and on 5 mg of tapazole. the e endo is going to wean her

> off and see if she goes back into a thyroid storm. if she does he says it

> would be time to remove the thyroid. he recommends rai. her thyroid is

> continuing to grow. about 1/2 inch every week. dr says this is normal and

> it will get bigger. im trying to get a second opinion from another peds

> endo. we have 2 in the area. not much choices. she has missed alot of

> school. we had a tutor for a couple of months.then she went back half

> days,,,now we just take 1 day a t a time thank you for listening i am

> numb with what to do. Pennie

Pennie,

I wish I could offer more wisdom, but I would get a second and even a third

opinion before electing for RAI. It may be that's what she needs; but it may

not and I would really hesitate to take that action with just one doctor's

advice. Has your doc considered surgery?

I'm forwarding a story to you from a man who went through Graves' treatment

without RAI. He is pro-medicine, anti-nutrition, so you'll have to balance

all that out. However, it's always nice to hear about success stories.

About school. We homeschool, and have had to do the same as you -- take one

day at a time. Amy's health is more important than schoolwork at this point

and we can always make up what we've lost. Additionally, the stress to the

rest of us makes it necessary for us to dial back while we get a handle on

this.

While Amy's thyroid numbers are coming down nicely on Tapazole, we're

concerned that her endo is seeing signs of some other illness or something

that isn't Graves'. Don't know yet what to do, but wait.

Could you drive out of state for another endo? We were willing to do that,

but found one here. We have driven 4 hours away from home for the

nutritional approach we're seeking to complement treatment.

My thoughts and prayers are with you. Write anytime. I know how hard this

is.

Amy's Pam

[Guest guest]

In a message dated 3/29/2002 11:22:52 AM Central Standard Time,

seemore38053@... writes:

> kaitlyn started off with 240mg inderal and 50 mg tapazole. she is now

> off beta blockers and on 5 mg of tapazole. the e endo is going to wean her

> off and see if she goes back into a thyroid storm. if she does he says it

> would be time to remove the thyroid. he recommends rai. her thyroid is

> continuing to grow. about 1/2 inch every week. dr says this is normal and

> it will get bigger. im trying to get a second opinion from another peds

> endo. we have 2 in the area. not much choices. she has missed alot of

> school. we had a tutor for a couple of months.then she went back half

> days,,,now we just take 1 day a t a time thank you for listening i am

> numb with what to do. Pennie

Pennie,

I wish I could offer more wisdom, but I would get a second and even a third

opinion before electing for RAI. It may be that's what she needs; but it may

not and I would really hesitate to take that action with just one doctor's

advice. Has your doc considered surgery?

I'm forwarding a story to you from a man who went through Graves' treatment

without RAI. He is pro-medicine, anti-nutrition, so you'll have to balance

all that out. However, it's always nice to hear about success stories.

About school. We homeschool, and have had to do the same as you -- take one

day at a time. Amy's health is more important than schoolwork at this point

and we can always make up what we've lost. Additionally, the stress to the

rest of us makes it necessary for us to dial back while we get a handle on

this.

While Amy's thyroid numbers are coming down nicely on Tapazole, we're

concerned that her endo is seeing signs of some other illness or something

that isn't Graves'. Don't know yet what to do, but wait.

Could you drive out of state for another endo? We were willing to do that,

but found one here. We have driven 4 hours away from home for the

nutritional approach we're seeking to complement treatment.

My thoughts and prayers are with you. Write anytime. I know how hard this

is.

Amy's Pam

[Guest guest]

Pennie,

I may have already told you Amy's beginnings with her doctors, but the first

two wanted her to have RAI immediately, as in " we can get you in next

Tuesday, " and it was a Friday when I spoke with them. They were unwilling to

use another medication when Amy reacted to PTU and told me that surgery is

more dangerous, that Amy would never get well on medication, and on and on.

Had I just listened to them, Amy would now be altered for life.

As it is, she's responding to treatment well so far, and we're optimistic.

The new endo we found doesn't even consider RAI before age 18.

Also, the advice about getting copies of labs is critical to your daughter's

help and your learning. Even though I can't understand everything there, I

can see where she is improving and also can see that with numbers constantly

changing we can expect some of the aches and pains she's experienced. It's

also good to at least appear intelligent when discussing this stuff with the

doctor! :-)

Do get a 2nd and even a third opinion.

Amy's Pam

In a message dated 3/29/2002 11:55:45 AM Central Standard Time,

luckystrike@... writes:

> Hi Pennie,

> I just read where Kaitlyn was just diagnosed in November of 2001. That is

> not very long to be on atd's and attain a solid remission. Please get

> copies of her labs and see where her numbers are, especially the Free T3

> and

> Free T4 and if they are not running them, request that he does so.

>

> Your doctor is scaring me with his recommendation of RAI. I had it at age

> 43

> and regret it to this day...I can not believe a childs doctor for graves is

>

> recommending this to children. He would make me RUN, not walk a way from

> him and never look back.

>

> Remission *usually* take 18-24 months on atd's to attain. Six months is

> not

> very long, though not impossible, I would definitely get her into another

> doc.

>

> Take care,

> Jody

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Pennie,

I may have already told you Amy's beginnings with her doctors, but the first

two wanted her to have RAI immediately, as in " we can get you in next

Tuesday, " and it was a Friday when I spoke with them. They were unwilling to

use another medication when Amy reacted to PTU and told me that surgery is

more dangerous, that Amy would never get well on medication, and on and on.

Had I just listened to them, Amy would now be altered for life.

As it is, she's responding to treatment well so far, and we're optimistic.

The new endo we found doesn't even consider RAI before age 18.

Also, the advice about getting copies of labs is critical to your daughter's

help and your learning. Even though I can't understand everything there, I

can see where she is improving and also can see that with numbers constantly

changing we can expect some of the aches and pains she's experienced. It's

also good to at least appear intelligent when discussing this stuff with the

doctor! :-)

Do get a 2nd and even a third opinion.

Amy's Pam

In a message dated 3/29/2002 11:55:45 AM Central Standard Time,

luckystrike@... writes:

> Hi Pennie,

> I just read where Kaitlyn was just diagnosed in November of 2001. That is

> not very long to be on atd's and attain a solid remission. Please get

> copies of her labs and see where her numbers are, especially the Free T3

> and

> Free T4 and if they are not running them, request that he does so.

>

> Your doctor is scaring me with his recommendation of RAI. I had it at age

> 43

> and regret it to this day...I can not believe a childs doctor for graves is

>

> recommending this to children. He would make me RUN, not walk a way from

> him and never look back.

>

> Remission *usually* take 18-24 months on atd's to attain. Six months is

> not

> very long, though not impossible, I would definitely get her into another

> doc.

>

> Take care,

> Jody

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

Pennie,

I may have already told you Amy's beginnings with her doctors, but the first

two wanted her to have RAI immediately, as in " we can get you in next

Tuesday, " and it was a Friday when I spoke with them. They were unwilling to

use another medication when Amy reacted to PTU and told me that surgery is

more dangerous, that Amy would never get well on medication, and on and on.

Had I just listened to them, Amy would now be altered for life.

As it is, she's responding to treatment well so far, and we're optimistic.

The new endo we found doesn't even consider RAI before age 18.

Also, the advice about getting copies of labs is critical to your daughter's

help and your learning. Even though I can't understand everything there, I

can see where she is improving and also can see that with numbers constantly

changing we can expect some of the aches and pains she's experienced. It's

also good to at least appear intelligent when discussing this stuff with the

doctor! :-)

Do get a 2nd and even a third opinion.

Amy's Pam

In a message dated 3/29/2002 11:55:45 AM Central Standard Time,

luckystrike@... writes:

> Hi Pennie,

> I just read where Kaitlyn was just diagnosed in November of 2001. That is

> not very long to be on atd's and attain a solid remission. Please get

> copies of her labs and see where her numbers are, especially the Free T3

> and

> Free T4 and if they are not running them, request that he does so.

>

> Your doctor is scaring me with his recommendation of RAI. I had it at age

> 43

> and regret it to this day...I can not believe a childs doctor for graves is

>

> recommending this to children. He would make me RUN, not walk a way from

> him and never look back.

>

> Remission *usually* take 18-24 months on atd's to attain. Six months is

> not

> very long, though not impossible, I would definitely get her into another

> doc.

>

> Take care,

> Jody

I want to be the kind of friend Jesus would call, at the end of the day, just

to talk about nothing.-Wayne

[Guest guest]

burbackpack@... wrote:

In a message dated 3/26/2002 11:13:15 PM Central Standard Time,

bjcraw@... writes:

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

> help with the daily changes. Pennie

Hi, Pennie,

I'm called Amy's Pam here since my daughter, Amy, was recently diagnosed with

Graves' and there at least two other Pams on this board.

Amy turned 14 a few days ago and was diagnosed in early February. She's

currently on 10 mg. of Tapazole, twice a day, after negatively reacting to

PTU. Her levels are starting to improve and we're hoping this will help

bring her into remission at some point.

She was cranky and emotional for quite a long time before we realized that

something was physically wrong with her. She dropped 18 pounds in January

and was constantly fatigued, also going from euphoria to tears in a matter of

minutes. School work deteriorated significantly and we're still trying to

get back in the groove with that part of her life.

We saw an endo in February who wanted her to have RAI immediately, but we are

opposed to this invasive, risky treatment. We're also utilizing a

nutritional science center four hours from our home to complement her

treatment and attempt to help her obtain optimal health.

Write anytime. I spent several weeks trying to find other moms with

daughters suffering from Graves'. Let me know what treatment you plan to

use, ask questions, and share whatever you feel comfortable with. It's a

tough road to walk, for the entire family, but this is a great group.

And, if no one has told you yet, your best written source is Elaine 's

book, Graves' Disease, available at libraries and any good bookstore. Worth

several reads to grasp what's going on here.

Amy's Pam

Hello amys pam,,

thank you for your support,

kaitlyn started off with 240mg inderal and 50 mg tapazole. she is now off

beta blockers and on 5 mg of tapazole. the e endo is going to wean her off and

see if she goes back into a thyroid storm. if she does he says it would be

time to remove the thyroid. he recommends rai. her thyroid is continuing to

grow. about 1/2 inch every week. dr says this is normal and it will get bigger.

im trying to get a second opinion from another peds endo. we have 2 in the

area. not much choices. she has missed alot of school. we had a tutor for a

couple of months.then she went back half days,,,now we just take 1 day a t a

time thank you for listening i am numb with what to do. Pennie

[Guest guest]

mrsbaird2002 wrote:

>

> ------- Forwarded message follows -------

> Date sent: Tue, 26 Mar 2002 19:44:11 -0800 (PST)

> From: pennie cherry <seemore38053@y...>

> Subject: teenager with graves

> To: graves_support-owner@y...

>

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to

turn for help with the daily changes. Pennie

Pennie - Hello and welcome to this wonderful group. They have been

helping me through the process with my 13 year old daughter, who was

diagnosed on Monday with Graves! What treatment is your daughter

on? And, I know those with more experience will have wisdom for you

on the daily changes. I know that right now with my , each day

is a new challenge as she absorbs all the information about her

condition while desperately trying to be " just like everyone else. "

So, some days she is cranky, some euphoric, some achy and weepy and

some days she feels like superwoman! I'll be watching for your

posts, but what has helped me the most in here is the knowledge that

you are not alone and we are all pulling for you and your daughter.

Hang in there! mary

hello mary, what a daily issue it has been. our endo is now weaning her off

tapazole. she was on 50 mg tapazole and 240mg inderal.her thyroid continues to

grow about 1/2inch weekly. that scares me. within a couple weeks we will

probably be off the tapozole and see what happens. if she has a thyroid storm

he says it will be time to remove it. he recommends rai. i need a second

opinion. trying to get one now 2 ped endos in the area not much for options.

pennie

[Guest guest]

mrsbaird2002 wrote:

>

> ------- Forwarded message follows -------

> Date sent: Tue, 26 Mar 2002 19:44:11 -0800 (PST)

> From: pennie cherry <seemore38053@y...>

> Subject: teenager with graves

> To: graves_support-owner@y...

>

>

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to

turn for help with the daily changes. Pennie

Pennie - Hello and welcome to this wonderful group. They have been

helping me through the process with my 13 year old daughter, who was

diagnosed on Monday with Graves! What treatment is your daughter

on? And, I know those with more experience will have wisdom for you

on the daily changes. I know that right now with my , each day

is a new challenge as she absorbs all the information about her

condition while desperately trying to be " just like everyone else. "

So, some days she is cranky, some euphoric, some achy and weepy and

some days she feels like superwoman! I'll be watching for your

posts, but what has helped me the most in here is the knowledge that

you are not alone and we are all pulling for you and your daughter.

Hang in there! mary

hello mary, what a daily issue it has been. our endo is now weaning her off

tapazole. she was on 50 mg tapazole and 240mg inderal.her thyroid continues to

grow about 1/2inch weekly. that scares me. within a couple weeks we will

probably be off the tapozole and see what happens. if she has a thyroid storm

he says it will be time to remove it. he recommends rai. i need a second

opinion. trying to get one now 2 ped endos in the area not much for options.

pennie

[Guest guest]

bjcraw@... wrote: >

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

help with the

> daily changes. Pennie

Welcome to the list Pennie, glad you found us. We have a couple of

moms on the list with teens who have Graves so you have someone

who can fill you in on what to expect. In the meantime, feel free to

peruse the archives, esp the last couple of weeks.

What treatment is your daughter on?

take care :-)

C

hello jean,, she iscurrently being weaned off tapazole. she started at 50mg tap

and 240 inderal,,waiting each day to see what is going to happen.. pennie

[Guest guest]

bjcraw@... wrote: >

> hello to all

>

> I am looking for info for my 13 year old daughter.

>

> She was diagnosed in november 2001. would like to know where to turn for

help with the

> daily changes. Pennie

Welcome to the list Pennie, glad you found us. We have a couple of

moms on the list with teens who have Graves so you have someone

who can fill you in on what to expect. In the meantime, feel free to

peruse the archives, esp the last couple of weeks.

What treatment is your daughter on?

take care :-)

C

hello jean,, she iscurrently being weaned off tapazole. she started at 50mg tap

and 240 inderal,,waiting each day to see what is going to happen.. pennie

[Guest guest]

Hi Pennie,

Welcome to the group, I must have missed your first post.

>>>kaitlyn started off with 240mg inderal and 50 mg tapazole. she is now

>>>off beta blockers and on 5 mg of tapazole. the e endo is going to wean

>>>her off and see if she goes back into a thyroid storm. if she does he

>>>says it would be time to remove the thyroid. he recommends rai. her

>>>thyroid is continuing to grow. about 1/2 inch every week. dr says this is

>>>normal and it will get bigger. im trying to get a second opinion from

>>>another peds endo. we have 2 in the area. not much choices. she has

>>>missed a lot of school. we had a tutor for a couple of months.then she

>>>went back half days,,,now we just take 1 day at a time thank you for

>>>listening i am numb with what to do. <<<

When was Kaitlyn diagnosed? How long has she been on Tap? Do you get

copies of her lab work? If not, go back and request copies of her labs from

the very beginning. This will really help you in charting her labs and

watching what her levels do with dosage changes, and what they are when she

is feeling good. A good suggestion is on the days Kaitlyn is scheduled for

labs, ask her how she feels, write it down on a small piece of paper, being

as specific as possibly. When you get the labs back, attach this note to

the lab sheet for that day. It will help you to see when she is feeling good

and what her lab levels were at that time, giving you a point to shoot for.

If she hasn't been on atd's long enough and the endo weans her, she could

very well head back hyper...and for him to suggest a young girl like Kaitlyn

to undergo RAI...well I would really consider ditching this guy. If she

were to have RAI now, by the time she is in her 20's or 30's and wanting to

start a family, she may not be able to do so. Read U's post on

infertility to see what she has gone through.

In Europe and Japan, the will NOT do RAI on any one of child bearing years,

period. They are so far ahead of us in this area.

I would also suggest 2 books for you, one is The Thyroid Solution by Dr.

Ridha Arem a good overall thyroid book. The other is

Graves Disease; A Practical Guide by Elaine <another member of this

group>. Her book is essential to those of us with graves. You can get both

books at amazon.com and barnesandnoble.com. I prefer barnes and noble as

both books are 20% discounted and when you buy more than one item, you get

free shipping!

I also sent to Amy's Pam 2 phone numbers and names of 2 endo's at the

Buffalo Children's Hospital in Buffalo NY that use block and replace therapy

on children. Maybe she could send them to you privately, as I don't think I

kept them <shame on me>. Maybe you could do a phone consultation with them

about what way to go with Kaitlyn.

My heart goes out to your daughter, I could not imagine being young and

diagnosed with graves while your also going through all of the puberty

things too. God Bless you and all the moms in this group for being

proactive on their behalf and doing all of this work. I hope things will

start improving for Kaitlyn soon.

Take care,

Jody

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Pennie,

I just read where Kaitlyn was just diagnosed in November of 2001. That is

not very long to be on atd's and attain a solid remission. Please get

copies of her labs and see where her numbers are, especially the Free T3 and

Free T4 and if they are not running them, request that he does so.

Your doctor is scaring me with his recommendation of RAI. I had it at age 43

and regret it to this day...I can not believe a childs doctor for graves is

recommending this to children. He would make me RUN, not walk a way from

him and never look back.

Remission *usually* take 18-24 months on atd's to attain. Six months is not

very long, though not impossible, I would definitely get her into another

doc.

Take care,

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Pennie,

I just read where Kaitlyn was just diagnosed in November of 2001. That is

not very long to be on atd's and attain a solid remission. Please get

copies of her labs and see where her numbers are, especially the Free T3 and

Free T4 and if they are not running them, request that he does so.

Your doctor is scaring me with his recommendation of RAI. I had it at age 43

and regret it to this day...I can not believe a childs doctor for graves is

recommending this to children. He would make me RUN, not walk a way from

him and never look back.

Remission *usually* take 18-24 months on atd's to attain. Six months is not

very long, though not impossible, I would definitely get her into another

doc.

Take care,

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Pennie,

I just read where Kaitlyn was just diagnosed in November of 2001. That is

not very long to be on atd's and attain a solid remission. Please get

copies of her labs and see where her numbers are, especially the Free T3 and

Free T4 and if they are not running them, request that he does so.

Your doctor is scaring me with his recommendation of RAI. I had it at age 43

and regret it to this day...I can not believe a childs doctor for graves is

recommending this to children. He would make me RUN, not walk a way from

him and never look back.

Remission *usually* take 18-24 months on atd's to attain. Six months is not

very long, though not impossible, I would definitely get her into another

doc.

Take care,

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

These kids are too young to lose their thyroids. If they can take the ATDs

to keep it under control, even if it's 10 or more years, it has to be better

than allowing a developing child to go hypo and rely on a synthetic hormone

for the rest of their lives. I hate to think of the repercussions of that.

Chances are HUGE that they will be overweight the rest of their lives. And

there's no telling what affect it could have on their development otherwise

not having their natural thyroid hormone. This really bothers me. I ran

across a woman out here somewhere who has been on a very low dose of ATDs

for 20 years. I can't understand how a doctor would even consider RAI or

surgery on a child, when there are drugs that can just block the excess

production of their natural hormones. I know the drugs can be hard on their

liver and pose an increased risk of cancer, but it is really miniscule.

Ibuprofen, cold medicines, and antibiotics are hard on your liver, too, and

just about everything we eat or breathe in today increases our risk of

cancer. I really feel for you mothers out there who are dealing with this.

You know what's best for your daughters, but if it were mine, I'd keep her

on ATDs if she could tolerate them for as long as it took, rather than

destroy her thyroid while she's still developing. My prayers are with you!

Holly