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Jenn,

After 's tenotomies she ended up with one foot that was great, flexed

20% upward and one foot that was'nt so great. Only flexed about 10% and it

was questionable at that point if she may possibly need another tenotomy at

a future date for the one foot. The day she got her brace Dr. Ponseti had

both feet out at the same angle in the shoes but he had to readjust the one

foot on the brace so that it did'nt flex upward as high as the " good " foot.

(So as not to do any damage to it while wearing the brace.) As it turned

out, wearing the brace did the trick and at our next appointment 3 months

later, both feet flexed to 20%. He said many times that the brace often

helps in that area and not to worry.

These days when I check her feet to see how flexible they still are, the one

foot does tend to be a little " tighter " than the other but it's still good.

She's been in the brace now for about a year and a half and only wears it at

night time.

I don't know what to say about the possible furthur surgery that your doctor

is talking about, but I definitely would give Dr. Ponseti a call and get an

opinion from him. Kind of like a second opinion.

Holly and

Question

>Olivia had her tenotomy done yesterday. Wow! I have seen pictures

>of how far out the casts are turned, but I was still surprised when I

>got a look at it!!! My question is about the up and down movement of

>the foot. Is that called dorsiflexion? And should it be good after

>the tenotomy? And if it's not, what does that mean? The doctor said

>that he was able to get her foot to a neutral position, but not any

>further. Her big toe is also shorter than the rest of her toes and

>he says that's because her first metatarsal still points down and he

>can't get it to come up any further. He mentioned that some kids

>will get more movement after the bracing, but I thought the brace was

>just to hold the correction? He also said that she may require

>further surgery besides the tenotomy.

>

>I am planning on emailing Dr. Ponseti with some pictures of her foot

>and the casts to get his opinion, but also wanted to know what you

>all think. What is your experience with this??

>

>Thanks for any input!

>

>Jen & Olivia 10-18-01 Left Clubfoot

>

>

>

>

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Jenn,

After 's tenotomies she ended up with one foot that was great, flexed

20% upward and one foot that was'nt so great. Only flexed about 10% and it

was questionable at that point if she may possibly need another tenotomy at

a future date for the one foot. The day she got her brace Dr. Ponseti had

both feet out at the same angle in the shoes but he had to readjust the one

foot on the brace so that it did'nt flex upward as high as the " good " foot.

(So as not to do any damage to it while wearing the brace.) As it turned

out, wearing the brace did the trick and at our next appointment 3 months

later, both feet flexed to 20%. He said many times that the brace often

helps in that area and not to worry.

These days when I check her feet to see how flexible they still are, the one

foot does tend to be a little " tighter " than the other but it's still good.

She's been in the brace now for about a year and a half and only wears it at

night time.

I don't know what to say about the possible furthur surgery that your doctor

is talking about, but I definitely would give Dr. Ponseti a call and get an

opinion from him. Kind of like a second opinion.

Holly and

Question

>Olivia had her tenotomy done yesterday. Wow! I have seen pictures

>of how far out the casts are turned, but I was still surprised when I

>got a look at it!!! My question is about the up and down movement of

>the foot. Is that called dorsiflexion? And should it be good after

>the tenotomy? And if it's not, what does that mean? The doctor said

>that he was able to get her foot to a neutral position, but not any

>further. Her big toe is also shorter than the rest of her toes and

>he says that's because her first metatarsal still points down and he

>can't get it to come up any further. He mentioned that some kids

>will get more movement after the bracing, but I thought the brace was

>just to hold the correction? He also said that she may require

>further surgery besides the tenotomy.

>

>I am planning on emailing Dr. Ponseti with some pictures of her foot

>and the casts to get his opinion, but also wanted to know what you

>all think. What is your experience with this??

>

>Thanks for any input!

>

>Jen & Olivia 10-18-01 Left Clubfoot

>

>

>

>

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Thank you so much ! That certainly relieves some of my anxiety.

I will be emailing Dr. Ponseti on Monday to see what he thinks!

Jen & Olivia

> Jen,

> I know it is a shock to see how up and out the foot is! If you go

to

> the photos section and look in Calebs album you can see what his

and

> his friend Edens casts looked like the day of their Tenotomies

were

> done at the U of Iowa. It is picture #7.

>

> Also about the dorsoflexion, Calebs was not great at first and did

> improve in the shoes. Now his is fine.

>

> And I am always for Dr. Ponseti's opinion!!!! Who would know more

> than he would?

> Best of luck, you are in our prayers

> and Caleb 3-31-01

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Thank you so much ! That certainly relieves some of my anxiety.

I will be emailing Dr. Ponseti on Monday to see what he thinks!

Jen & Olivia

> Jen,

> I know it is a shock to see how up and out the foot is! If you go

to

> the photos section and look in Calebs album you can see what his

and

> his friend Edens casts looked like the day of their Tenotomies

were

> done at the U of Iowa. It is picture #7.

>

> Also about the dorsoflexion, Calebs was not great at first and did

> improve in the shoes. Now his is fine.

>

> And I am always for Dr. Ponseti's opinion!!!! Who would know more

> than he would?

> Best of luck, you are in our prayers

> and Caleb 3-31-01

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Thank you so much ! That certainly relieves some of my anxiety.

I will be emailing Dr. Ponseti on Monday to see what he thinks!

Jen & Olivia

> Jen,

> I know it is a shock to see how up and out the foot is! If you go

to

> the photos section and look in Calebs album you can see what his

and

> his friend Edens casts looked like the day of their Tenotomies

were

> done at the U of Iowa. It is picture #7.

>

> Also about the dorsoflexion, Calebs was not great at first and did

> improve in the shoes. Now his is fine.

>

> And I am always for Dr. Ponseti's opinion!!!! Who would know more

> than he would?

> Best of luck, you are in our prayers

> and Caleb 3-31-01

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Thank you Holly! I think that the surgery that the doctor was

talking about was a tendon transfer. He said that since Olivia's

clubfoot is so severe and nonflexible that she is at a really high

risk of a relapse. He also said that it's very important to use the

brace diligently, but that some kids just don't " take to it " and end

up needing the tendon transfer. I guess the point he was trying to

make is that we must make her wear the brace no matter what since her

foot is so severe. She really has no dorsoflexion right now. He was

able to move her foot into the neutral position, but not any

further. I know he had hoped for more than that. He also told us

that the brace can be helpful in that area and to just wait and see.

I'm still going to be emailing Dr. Ponseti for his opinion, but

thanks again for your input!!

Jen & Olivia

> Jenn,

> After 's tenotomies she ended up with one foot that was great,

flexed

> 20% upward and one foot that was'nt so great. Only flexed about 10%

and it

> was questionable at that point if she may possibly need another

tenotomy at

> a future date for the one foot. The day she got her brace Dr.

Ponseti had

> both feet out at the same angle in the shoes but he had to readjust

the one

> foot on the brace so that it did'nt flex upward as high as

the " good " foot.

> (So as not to do any damage to it while wearing the brace.) As it

turned

> out, wearing the brace did the trick and at our next appointment 3

months

> later, both feet flexed to 20%. He said many times that the brace

often

> helps in that area and not to worry.

> These days when I check her feet to see how flexible they still

are, the one

> foot does tend to be a little " tighter " than the other but it's

still good.

> She's been in the brace now for about a year and a half and only

wears it at

> night time.

> I don't know what to say about the possible furthur surgery that

your doctor

> is talking about, but I definitely would give Dr. Ponseti a call

and get an

> opinion from him. Kind of like a second opinion.

> Holly and

> Question

>

>

> >Olivia had her tenotomy done yesterday. Wow! I have seen pictures

> >of how far out the casts are turned, but I was still surprised

when I

> >got a look at it!!! My question is about the up and down movement

of

> >the foot. Is that called dorsiflexion? And should it be good

after

> >the tenotomy? And if it's not, what does that mean? The doctor

said

> >that he was able to get her foot to a neutral position, but not any

> >further. Her big toe is also shorter than the rest of her toes and

> >he says that's because her first metatarsal still points down and

he

> >can't get it to come up any further. He mentioned that some kids

> >will get more movement after the bracing, but I thought the brace

was

> >just to hold the correction? He also said that she may require

> >further surgery besides the tenotomy.

> >

> >I am planning on emailing Dr. Ponseti with some pictures of her

foot

> >and the casts to get his opinion, but also wanted to know what you

> >all think. What is your experience with this??

> >

> >Thanks for any input!

> >

> >Jen & Olivia 10-18-01 Left Clubfoot

> >

> >

> >

> >

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Thank you Holly! I think that the surgery that the doctor was

talking about was a tendon transfer. He said that since Olivia's

clubfoot is so severe and nonflexible that she is at a really high

risk of a relapse. He also said that it's very important to use the

brace diligently, but that some kids just don't " take to it " and end

up needing the tendon transfer. I guess the point he was trying to

make is that we must make her wear the brace no matter what since her

foot is so severe. She really has no dorsoflexion right now. He was

able to move her foot into the neutral position, but not any

further. I know he had hoped for more than that. He also told us

that the brace can be helpful in that area and to just wait and see.

I'm still going to be emailing Dr. Ponseti for his opinion, but

thanks again for your input!!

Jen & Olivia

> Jenn,

> After 's tenotomies she ended up with one foot that was great,

flexed

> 20% upward and one foot that was'nt so great. Only flexed about 10%

and it

> was questionable at that point if she may possibly need another

tenotomy at

> a future date for the one foot. The day she got her brace Dr.

Ponseti had

> both feet out at the same angle in the shoes but he had to readjust

the one

> foot on the brace so that it did'nt flex upward as high as

the " good " foot.

> (So as not to do any damage to it while wearing the brace.) As it

turned

> out, wearing the brace did the trick and at our next appointment 3

months

> later, both feet flexed to 20%. He said many times that the brace

often

> helps in that area and not to worry.

> These days when I check her feet to see how flexible they still

are, the one

> foot does tend to be a little " tighter " than the other but it's

still good.

> She's been in the brace now for about a year and a half and only

wears it at

> night time.

> I don't know what to say about the possible furthur surgery that

your doctor

> is talking about, but I definitely would give Dr. Ponseti a call

and get an

> opinion from him. Kind of like a second opinion.

> Holly and

> Question

>

>

> >Olivia had her tenotomy done yesterday. Wow! I have seen pictures

> >of how far out the casts are turned, but I was still surprised

when I

> >got a look at it!!! My question is about the up and down movement

of

> >the foot. Is that called dorsiflexion? And should it be good

after

> >the tenotomy? And if it's not, what does that mean? The doctor

said

> >that he was able to get her foot to a neutral position, but not any

> >further. Her big toe is also shorter than the rest of her toes and

> >he says that's because her first metatarsal still points down and

he

> >can't get it to come up any further. He mentioned that some kids

> >will get more movement after the bracing, but I thought the brace

was

> >just to hold the correction? He also said that she may require

> >further surgery besides the tenotomy.

> >

> >I am planning on emailing Dr. Ponseti with some pictures of her

foot

> >and the casts to get his opinion, but also wanted to know what you

> >all think. What is your experience with this??

> >

> >Thanks for any input!

> >

> >Jen & Olivia 10-18-01 Left Clubfoot

> >

> >

> >

> >

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Hi Jen,

When Eden had her casts removed after her tenotomy, Dr. Ponseti said

that her dorsiflexion was not as good as he would have liked it to

be. At that point, she could only flex her feet upwards to 15%. He

gave us stretching exercises to perform on her feet for five minutes

every day, but warned us that if her dorsiflexion did not improve

after wearing the FAB full-time for three months, she might have to

have a second tenotomy performed. We were very diligent with the

exercises and FAB wear, and were relieved to find out that after the

three months were over, her feet were able to flex upwards to 30% (I

believe Dr. P said that 25% is considered " normal " ). I would contact

Dr. Ponseti, but please try not to worry too much. If it is just a

matter of limited dorsiflexion, Dr. P said that the WORST CASE

scenario would be another tenotomy.

& Eden 7/20/01 severe bilateral CF

> Olivia had her tenotomy done yesterday. Wow! I have seen pictures

> of how far out the casts are turned, but I was still surprised when

I

> got a look at it!!! My question is about the up and down movement

of

> the foot. Is that called dorsiflexion? And should it be good

after

> the tenotomy? And if it's not, what does that mean? The doctor

said

> that he was able to get her foot to a neutral position, but not any

> further. Her big toe is also shorter than the rest of her toes and

> he says that's because her first metatarsal still points down and

he

> can't get it to come up any further. He mentioned that some kids

> will get more movement after the bracing, but I thought the brace

was

> just to hold the correction? He also said that she may require

> further surgery besides the tenotomy.

>

> I am planning on emailing Dr. Ponseti with some pictures of her

foot

> and the casts to get his opinion, but also wanted to know what you

> all think. What is your experience with this??

>

> Thanks for any input!

>

> Jen & Olivia 10-18-01 Left Clubfoot

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Hi Jen,

My daughter had a unilateral clubfoot. Her tenotomy was done by an non

Ponseti practicing doctor. It is my understanding that there will always be

a slight difference in dorsiflexion between the clubfoot side and the non

clubfoot side. My daughter is 2y.o. we can tell a difference in the range

of dorsiflexion. However Ivy's funcion is good. She can rise up on her

tippy toes. I know that when we switched to Dr .Ponseti that he was

concidering doing a second tenotomy. I don't know if that is an option, or

if that would help Olivia.

It is my understanding that the FAB is to be worn after " correction " is

achieved. However the bend in the bar is to aide in keeping the heal down.

I can see how the FAB might help improve dorsiflexion.

I would inncorage you to go ahead with your plans to talk with Dr Ponseti.

Sara and Ivy 8/17/99

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I think the reason the brace helps with the dorsiflexion is that it is very

heavy and can make the ligaments more flexible because of the weight pulling

on them.

Joanne

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: Question

>Date: Sun, 24 Feb 2002 03:48:42 -0000

>

>Thank you Holly! I think that the surgery that the doctor was

>talking about was a tendon transfer. He said that since Olivia's

>clubfoot is so severe and nonflexible that she is at a really high

>risk of a relapse. He also said that it's very important to use the

>brace diligently, but that some kids just don't " take to it " and end

>up needing the tendon transfer. I guess the point he was trying to

>make is that we must make her wear the brace no matter what since her

>foot is so severe. She really has no dorsoflexion right now. He was

>able to move her foot into the neutral position, but not any

>further. I know he had hoped for more than that. He also told us

>that the brace can be helpful in that area and to just wait and see.

>

>I'm still going to be emailing Dr. Ponseti for his opinion, but

>thanks again for your input!!

>

>Jen & Olivia

>

>

> > Jenn,

> > After 's tenotomies she ended up with one foot that was great,

>flexed

> > 20% upward and one foot that was'nt so great. Only flexed about 10%

>and it

> > was questionable at that point if she may possibly need another

>tenotomy at

> > a future date for the one foot. The day she got her brace Dr.

>Ponseti had

> > both feet out at the same angle in the shoes but he had to readjust

>the one

> > foot on the brace so that it did'nt flex upward as high as

>the " good " foot.

> > (So as not to do any damage to it while wearing the brace.) As it

>turned

> > out, wearing the brace did the trick and at our next appointment 3

>months

> > later, both feet flexed to 20%. He said many times that the brace

>often

> > helps in that area and not to worry.

> > These days when I check her feet to see how flexible they still

>are, the one

> > foot does tend to be a little " tighter " than the other but it's

>still good.

> > She's been in the brace now for about a year and a half and only

>wears it at

> > night time.

> > I don't know what to say about the possible furthur surgery that

>your doctor

> > is talking about, but I definitely would give Dr. Ponseti a call

>and get an

> > opinion from him. Kind of like a second opinion.

> > Holly and

> > Question

> >

> >

> > >Olivia had her tenotomy done yesterday. Wow! I have seen pictures

> > >of how far out the casts are turned, but I was still surprised

>when I

> > >got a look at it!!! My question is about the up and down movement

>of

> > >the foot. Is that called dorsiflexion? And should it be good

>after

> > >the tenotomy? And if it's not, what does that mean? The doctor

>said

> > >that he was able to get her foot to a neutral position, but not any

> > >further. Her big toe is also shorter than the rest of her toes and

> > >he says that's because her first metatarsal still points down and

>he

> > >can't get it to come up any further. He mentioned that some kids

> > >will get more movement after the bracing, but I thought the brace

>was

> > >just to hold the correction? He also said that she may require

> > >further surgery besides the tenotomy.

> > >

> > >I am planning on emailing Dr. Ponseti with some pictures of her

>foot

> > >and the casts to get his opinion, but also wanted to know what you

> > >all think. What is your experience with this??

> > >

> > >Thanks for any input!

> > >

> > >Jen & Olivia 10-18-01 Left Clubfoot

> > >

> > >

> > >

> > >

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Jenn,

I completely agree about using the brace diligently. After going through one

unsuccessful treatment we had our minds set that if this Ponseti method

worked we would do every thing that the doctor told us for as long as he

told us to ensure the best possible outcome. Although sometimes there is

always the case that even though you have done everything right and not

strayed from your regiment that problems can arise anyway, at least we

thought that we could say we did everything in our power to avoid it.

The BEST piece of advice Dr. Ponseti ever gave us was to treat the brace as

though it was a cast and unremovable for the first couple of nights so that

could adjust to it and learn to live with it right from the start.

Since then she has never had a single night that she has been out of the

brace, even the times that she was ill. She has always slept better with it

on anyways because she is so used to it. Up until a few nights

ago................I took the brace off at 3:00am because she has been so

sick the past week. She has the flu and a double ear infection and her temp

was at 104 that night. Boy, I have to tell you, on one hand I did'nt

hesitate to give her a little comfort by taking the brace off and putting

her in bed with me for the rest of the night, but on the other hand I felt

guilty about loosing those few hours out of the brace.

Anyway, Dr. Ponseti could'nt stress enough the importance of the brace being

used exactly as prescribed, like your doctor has also warned you of. I think

initially it was the one part of the treatment that my husband and I dreaded

the most. I think mostly because of the amount of time (in years) that it

has to usually be worn. Now I can honestly say, it's just part of 's

jammies! We don't even notice it anymore and she could care less that we put

it on every night. She does however give us her opinion in the morning when

she has to wait a half hour after getting up for me to take them off.

Best of luck,

Holly and

Question

>>

>>

>> >Olivia had her tenotomy done yesterday. Wow! I have seen pictures

>> >of how far out the casts are turned, but I was still surprised

>when I

>> >got a look at it!!! My question is about the up and down movement

>of

>> >the foot. Is that called dorsiflexion? And should it be good

>after

>> >the tenotomy? And if it's not, what does that mean? The doctor

>said

>> >that he was able to get her foot to a neutral position, but not any

>> >further. Her big toe is also shorter than the rest of her toes and

>> >he says that's because her first metatarsal still points down and

>he

>> >can't get it to come up any further. He mentioned that some kids

>> >will get more movement after the bracing, but I thought the brace

>was

>> >just to hold the correction? He also said that she may require

>> >further surgery besides the tenotomy.

>> >

>> >I am planning on emailing Dr. Ponseti with some pictures of her

>foot

>> >and the casts to get his opinion, but also wanted to know what you

>> >all think. What is your experience with this??

>> >

>> >Thanks for any input!

>> >

>> >Jen & Olivia 10-18-01 Left Clubfoot

>> >

>> >

>> >

>> >

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Hi Kristi,

While some people do achieve spontaneous remission within a few months, the

average person takes 6 months to 1 year and many people remain on the drugs

for several years. Everyone eventually goes into spontaneous remission and

the idea is to use the drugs until this happens. Anti-thyroid drugs both help

lower your thyroid hormone levels and help you achieve remission because of

their mild immunosuppressant effect.

The idea isn't to take you off the drugs to see if you've achieved remission

because that's just guessing. Ideally, you would have a test for TSI, the

antibodies that cause hyperthyroidism in GD early on. When your doctor

suspects that you might be approaching remission, you'd have another TSI

level. When it approaches the low end of the normal range, you've achieved

remission.

There are other tests to help determine if you're in remission. Some docs use

ultrasound with doppler imaging to see if you've had a reduction in thyroid

volume. But there has to be guidelines like this. Your thyroid hormone levels

decline from the drugs so you can't look at these levels as a way of

predicting remission. Also, ATDs should never be withdrawn abruptly. The idea

is to reduce them slowly so your immune system gets used to the change.

Your idea to combine diet and supplements as part of your healing protocol is

a good one. Take care, Elaine

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Hi Kristi,

While some people do achieve spontaneous remission within a few months, the

average person takes 6 months to 1 year and many people remain on the drugs

for several years. Everyone eventually goes into spontaneous remission and

the idea is to use the drugs until this happens. Anti-thyroid drugs both help

lower your thyroid hormone levels and help you achieve remission because of

their mild immunosuppressant effect.

The idea isn't to take you off the drugs to see if you've achieved remission

because that's just guessing. Ideally, you would have a test for TSI, the

antibodies that cause hyperthyroidism in GD early on. When your doctor

suspects that you might be approaching remission, you'd have another TSI

level. When it approaches the low end of the normal range, you've achieved

remission.

There are other tests to help determine if you're in remission. Some docs use

ultrasound with doppler imaging to see if you've had a reduction in thyroid

volume. But there has to be guidelines like this. Your thyroid hormone levels

decline from the drugs so you can't look at these levels as a way of

predicting remission. Also, ATDs should never be withdrawn abruptly. The idea

is to reduce them slowly so your immune system gets used to the change.

Your idea to combine diet and supplements as part of your healing protocol is

a good one. Take care, Elaine

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Guest guest

Hi Kristi,

While some people do achieve spontaneous remission within a few months, the

average person takes 6 months to 1 year and many people remain on the drugs

for several years. Everyone eventually goes into spontaneous remission and

the idea is to use the drugs until this happens. Anti-thyroid drugs both help

lower your thyroid hormone levels and help you achieve remission because of

their mild immunosuppressant effect.

The idea isn't to take you off the drugs to see if you've achieved remission

because that's just guessing. Ideally, you would have a test for TSI, the

antibodies that cause hyperthyroidism in GD early on. When your doctor

suspects that you might be approaching remission, you'd have another TSI

level. When it approaches the low end of the normal range, you've achieved

remission.

There are other tests to help determine if you're in remission. Some docs use

ultrasound with doppler imaging to see if you've had a reduction in thyroid

volume. But there has to be guidelines like this. Your thyroid hormone levels

decline from the drugs so you can't look at these levels as a way of

predicting remission. Also, ATDs should never be withdrawn abruptly. The idea

is to reduce them slowly so your immune system gets used to the change.

Your idea to combine diet and supplements as part of your healing protocol is

a good one. Take care, Elaine

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In a message dated 4/23/2002 10:18:45 AM Central Daylight Time,

kristi@... writes:

> Hi Everyone,

> I have a question I thought I'd just throw out here. I had my doc

> appointment yesterday. I was diagnosed with Graves in December,

> started tapazole in January, went way into hypoland and was dropped

> from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

> how I felt and I told her I was feeling fine actually. She said my

> thryoid was still a little enlarged and she didn't think I was in

> remission. She said that we'd wait for the labs to get back and if

> everything was good we'd stay on this dose for 2 or 3 months and then

> see about stopping them to see if I go into remission. ANYWAY, my

> question is....doesn't it take longer than a few months to achieve

> remission? From everything I've read, you need to be on at least a

> small dose of meds for 12-18 months before having a chance at

> remission. This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

> Kristi

>

Kristi,

My daughter Amy just had another endo visit yesterday and the doctor thinks

she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not

only has he not even mentioned RAI as a possibility, but his opinion was that

if she could go that quickly from hyper to hypo, he believes she will NEVER

need think of surgery or RAI, that she can be successfully treated with ATDs.

We're waiting for the blood tests to come back but he's looking at lowering

her dose to get her levels right on target.

So, yes, I believe your doctor is out of line. Stay strong in what you

believe you need. It sounds as if your numbers changed as rapidly as Amy's

did, albeit on a higher dose of ATD.

Amy's Pam

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In a message dated 4/23/2002 10:18:45 AM Central Daylight Time,

kristi@... writes:

> Hi Everyone,

> I have a question I thought I'd just throw out here. I had my doc

> appointment yesterday. I was diagnosed with Graves in December,

> started tapazole in January, went way into hypoland and was dropped

> from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

> how I felt and I told her I was feeling fine actually. She said my

> thryoid was still a little enlarged and she didn't think I was in

> remission. She said that we'd wait for the labs to get back and if

> everything was good we'd stay on this dose for 2 or 3 months and then

> see about stopping them to see if I go into remission. ANYWAY, my

> question is....doesn't it take longer than a few months to achieve

> remission? From everything I've read, you need to be on at least a

> small dose of meds for 12-18 months before having a chance at

> remission. This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

> Kristi

>

Kristi,

My daughter Amy just had another endo visit yesterday and the doctor thinks

she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not

only has he not even mentioned RAI as a possibility, but his opinion was that

if she could go that quickly from hyper to hypo, he believes she will NEVER

need think of surgery or RAI, that she can be successfully treated with ATDs.

We're waiting for the blood tests to come back but he's looking at lowering

her dose to get her levels right on target.

So, yes, I believe your doctor is out of line. Stay strong in what you

believe you need. It sounds as if your numbers changed as rapidly as Amy's

did, albeit on a higher dose of ATD.

Amy's Pam

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In a message dated 4/23/2002 10:18:45 AM Central Daylight Time,

kristi@... writes:

> Hi Everyone,

> I have a question I thought I'd just throw out here. I had my doc

> appointment yesterday. I was diagnosed with Graves in December,

> started tapazole in January, went way into hypoland and was dropped

> from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

> how I felt and I told her I was feeling fine actually. She said my

> thryoid was still a little enlarged and she didn't think I was in

> remission. She said that we'd wait for the labs to get back and if

> everything was good we'd stay on this dose for 2 or 3 months and then

> see about stopping them to see if I go into remission. ANYWAY, my

> question is....doesn't it take longer than a few months to achieve

> remission? From everything I've read, you need to be on at least a

> small dose of meds for 12-18 months before having a chance at

> remission. This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

> Kristi

>

Kristi,

My daughter Amy just had another endo visit yesterday and the doctor thinks

she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not

only has he not even mentioned RAI as a possibility, but his opinion was that

if she could go that quickly from hyper to hypo, he believes she will NEVER

need think of surgery or RAI, that she can be successfully treated with ATDs.

We're waiting for the blood tests to come back but he's looking at lowering

her dose to get her levels right on target.

So, yes, I believe your doctor is out of line. Stay strong in what you

believe you need. It sounds as if your numbers changed as rapidly as Amy's

did, albeit on a higher dose of ATD.

Amy's Pam

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> This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

Kristi,

I'd say you are being rushed! Your body and mind need time and your

instincts know it. Follow those gut reactions, they can tell you

alot.

If your doc is not willing to give you the time you need to find

balance, then maybe you should look for another. SOme people take ATD's

for years and years. You get as long as you want! :)

Val

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> This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

Kristi,

I'd say you are being rushed! Your body and mind need time and your

instincts know it. Follow those gut reactions, they can tell you

alot.

If your doc is not willing to give you the time you need to find

balance, then maybe you should look for another. SOme people take ATD's

for years and years. You get as long as you want! :)

Val

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Absolutely it takes longer than that. My doc told me the same thing-try it

for a few months and go off and see what happens. That's just asking for

failure. Of course, he just wants me to have RAI and get it over with.

From what I understand it does take 18 to 24 months, AND you should never

stop them cold turkey. You need to wean off them so your system doesn't go

into shock! If you're heading for remission, you'll have been lowering

your dose gradually to keep from going hypo most likely anyway. In some

cases, there's a spontaneous remission, but I think that's rare. Hang

tough. As long as you're feeling good and doing OK on the ATDs there's no

reason to rush it.

Holly

Question

Hi Everyone,

I have a question I thought I'd just throw out here. I had my doc

appointment yesterday. I was diagnosed with Graves in December,

started tapazole in January, went way into hypoland and was dropped

from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

how I felt and I told her I was feeling fine actually. She said my

thryoid was still a little enlarged and she didn't think I was in

remission. She said that we'd wait for the labs to get back and if

everything was good we'd stay on this dose for 2 or 3 months and then

see about stopping them to see if I go into remission. ANYWAY, my

question is....doesn't it take longer than a few months to achieve

remission? From everything I've read, you need to be on at least a

small dose of meds for 12-18 months before having a chance at

remission. This doctor has been OK, but she does mention RAI

everytime I see her. Am I wrong or is this a little rushed? I don't

feel anywhere near ready to stop the medication in 2 months. I'm

still working on dietary and lifestyle changes and to achieve some

kind of feeling of balance. Does that make sense?

Thanks for any thoughts you might have on this.

Kristi

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Guest guest

Absolutely it takes longer than that. My doc told me the same thing-try it

for a few months and go off and see what happens. That's just asking for

failure. Of course, he just wants me to have RAI and get it over with.

From what I understand it does take 18 to 24 months, AND you should never

stop them cold turkey. You need to wean off them so your system doesn't go

into shock! If you're heading for remission, you'll have been lowering

your dose gradually to keep from going hypo most likely anyway. In some

cases, there's a spontaneous remission, but I think that's rare. Hang

tough. As long as you're feeling good and doing OK on the ATDs there's no

reason to rush it.

Holly

Question

Hi Everyone,

I have a question I thought I'd just throw out here. I had my doc

appointment yesterday. I was diagnosed with Graves in December,

started tapazole in January, went way into hypoland and was dropped

from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

how I felt and I told her I was feeling fine actually. She said my

thryoid was still a little enlarged and she didn't think I was in

remission. She said that we'd wait for the labs to get back and if

everything was good we'd stay on this dose for 2 or 3 months and then

see about stopping them to see if I go into remission. ANYWAY, my

question is....doesn't it take longer than a few months to achieve

remission? From everything I've read, you need to be on at least a

small dose of meds for 12-18 months before having a chance at

remission. This doctor has been OK, but she does mention RAI

everytime I see her. Am I wrong or is this a little rushed? I don't

feel anywhere near ready to stop the medication in 2 months. I'm

still working on dietary and lifestyle changes and to achieve some

kind of feeling of balance. Does that make sense?

Thanks for any thoughts you might have on this.

Kristi

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Guest guest

Absolutely it takes longer than that. My doc told me the same thing-try it

for a few months and go off and see what happens. That's just asking for

failure. Of course, he just wants me to have RAI and get it over with.

From what I understand it does take 18 to 24 months, AND you should never

stop them cold turkey. You need to wean off them so your system doesn't go

into shock! If you're heading for remission, you'll have been lowering

your dose gradually to keep from going hypo most likely anyway. In some

cases, there's a spontaneous remission, but I think that's rare. Hang

tough. As long as you're feeling good and doing OK on the ATDs there's no

reason to rush it.

Holly

Question

Hi Everyone,

I have a question I thought I'd just throw out here. I had my doc

appointment yesterday. I was diagnosed with Graves in December,

started tapazole in January, went way into hypoland and was dropped

from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

how I felt and I told her I was feeling fine actually. She said my

thryoid was still a little enlarged and she didn't think I was in

remission. She said that we'd wait for the labs to get back and if

everything was good we'd stay on this dose for 2 or 3 months and then

see about stopping them to see if I go into remission. ANYWAY, my

question is....doesn't it take longer than a few months to achieve

remission? From everything I've read, you need to be on at least a

small dose of meds for 12-18 months before having a chance at

remission. This doctor has been OK, but she does mention RAI

everytime I see her. Am I wrong or is this a little rushed? I don't

feel anywhere near ready to stop the medication in 2 months. I'm

still working on dietary and lifestyle changes and to achieve some

kind of feeling of balance. Does that make sense?

Thanks for any thoughts you might have on this.

Kristi

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Guest guest

That's interesting...I hadn't heard that. I was actually a little surprised by

how well the drugs seemed to work. I'm glad to hear your daughter is doing well

on them too! My heart goes out to her, being so young. She's lucky to have

such a caring mother who is out there looking for information! My thoughts and

prayers are with you,

Kristi

Re: Question

In a message dated 4/23/2002 10:18:45 AM Central Daylight Time,

kristi@... writes:

> Hi Everyone,

> I have a question I thought I'd just throw out here. I had my doc

> appointment yesterday. I was diagnosed with Graves in December,

> started tapazole in January, went way into hypoland and was dropped

> from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

> how I felt and I told her I was feeling fine actually. She said my

> thryoid was still a little enlarged and she didn't think I was in

> remission. She said that we'd wait for the labs to get back and if

> everything was good we'd stay on this dose for 2 or 3 months and then

> see about stopping them to see if I go into remission. ANYWAY, my

> question is....doesn't it take longer than a few months to achieve

> remission? From everything I've read, you need to be on at least a

> small dose of meds for 12-18 months before having a chance at

> remission. This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

> Kristi

>

Kristi,

My daughter Amy just had another endo visit yesterday and the doctor thinks

she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not

only has he not even mentioned RAI as a possibility, but his opinion was that

if she could go that quickly from hyper to hypo, he believes she will NEVER

need think of surgery or RAI, that she can be successfully treated with ATDs.

We're waiting for the blood tests to come back but he's looking at lowering

her dose to get her levels right on target.

So, yes, I believe your doctor is out of line. Stay strong in what you

believe you need. It sounds as if your numbers changed as rapidly as Amy's

did, albeit on a higher dose of ATD.

Amy's Pam

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Guest guest

That's interesting...I hadn't heard that. I was actually a little surprised by

how well the drugs seemed to work. I'm glad to hear your daughter is doing well

on them too! My heart goes out to her, being so young. She's lucky to have

such a caring mother who is out there looking for information! My thoughts and

prayers are with you,

Kristi

Re: Question

In a message dated 4/23/2002 10:18:45 AM Central Daylight Time,

kristi@... writes:

> Hi Everyone,

> I have a question I thought I'd just throw out here. I had my doc

> appointment yesterday. I was diagnosed with Graves in December,

> started tapazole in January, went way into hypoland and was dropped

> from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

> how I felt and I told her I was feeling fine actually. She said my

> thryoid was still a little enlarged and she didn't think I was in

> remission. She said that we'd wait for the labs to get back and if

> everything was good we'd stay on this dose for 2 or 3 months and then

> see about stopping them to see if I go into remission. ANYWAY, my

> question is....doesn't it take longer than a few months to achieve

> remission? From everything I've read, you need to be on at least a

> small dose of meds for 12-18 months before having a chance at

> remission. This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

> Kristi

>

Kristi,

My daughter Amy just had another endo visit yesterday and the doctor thinks

she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not

only has he not even mentioned RAI as a possibility, but his opinion was that

if she could go that quickly from hyper to hypo, he believes she will NEVER

need think of surgery or RAI, that she can be successfully treated with ATDs.

We're waiting for the blood tests to come back but he's looking at lowering

her dose to get her levels right on target.

So, yes, I believe your doctor is out of line. Stay strong in what you

believe you need. It sounds as if your numbers changed as rapidly as Amy's

did, albeit on a higher dose of ATD.

Amy's Pam

Share this post


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Guest guest

That's interesting...I hadn't heard that. I was actually a little surprised by

how well the drugs seemed to work. I'm glad to hear your daughter is doing well

on them too! My heart goes out to her, being so young. She's lucky to have

such a caring mother who is out there looking for information! My thoughts and

prayers are with you,

Kristi

Re: Question

In a message dated 4/23/2002 10:18:45 AM Central Daylight Time,

kristi@... writes:

> Hi Everyone,

> I have a question I thought I'd just throw out here. I had my doc

> appointment yesterday. I was diagnosed with Graves in December,

> started tapazole in January, went way into hypoland and was dropped

> from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me

> how I felt and I told her I was feeling fine actually. She said my

> thryoid was still a little enlarged and she didn't think I was in

> remission. She said that we'd wait for the labs to get back and if

> everything was good we'd stay on this dose for 2 or 3 months and then

> see about stopping them to see if I go into remission. ANYWAY, my

> question is....doesn't it take longer than a few months to achieve

> remission? From everything I've read, you need to be on at least a

> small dose of meds for 12-18 months before having a chance at

> remission. This doctor has been OK, but she does mention RAI

> everytime I see her. Am I wrong or is this a little rushed? I don't

> feel anywhere near ready to stop the medication in 2 months. I'm

> still working on dietary and lifestyle changes and to achieve some

> kind of feeling of balance. Does that make sense?

> Thanks for any thoughts you might have on this.

> Kristi

>

Kristi,

My daughter Amy just had another endo visit yesterday and the doctor thinks

she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not

only has he not even mentioned RAI as a possibility, but his opinion was that

if she could go that quickly from hyper to hypo, he believes she will NEVER

need think of surgery or RAI, that she can be successfully treated with ATDs.

We're waiting for the blood tests to come back but he's looking at lowering

her dose to get her levels right on target.

So, yes, I believe your doctor is out of line. Stay strong in what you

believe you need. It sounds as if your numbers changed as rapidly as Amy's

did, albeit on a higher dose of ATD.

Amy's Pam

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