Re: (unknown)

March 27, 2002

Yeah, I know it's longer than what I thought. But,

since the endocrinologist can't see me until mid

April, I will be seeing my regular doctor next week.

She said she might start me with a low dosage

medication until I see the endocrinologist.

Thanks for your concern. I'm worried, too!

--- Terry ding wrote:

> Iris,

>

> I would push the doctor's office to have him or her

> see you sooner, if

> possible. Let him know your symptoms are worsening,

> and that you're worried

> about waiting so much longer. Or, go back to the

> original doctor if you feel

> more comfortable that way. You will continue to feel

> worse and worse

> untreated, and there's simply no reason to wait 2 or

> 3 more weeks on top of

> the several weeks since your diagnosis. Sometimes

> office staff is unaware,

> when making appointments, what you're coming in for.

>

> Graves, treated, is quite manageable. Untreated it

> can be very dangerous to

> your health!

>

> Terry

>

> >

> > Reply-To: graves_support

> > Date: Wed, 27 Mar 2002 12:42:28 -0800 (PST)

> > To: graves_support

> > Subject: Re: (unknown)

> >

> > Hi, Terry!

> >

> > Thanks for answering back to my question. Yes,

> you're

> > right....I have all the symptoms you have

> mentioned!

> >

> > I haven't started any medications at this time. My

> > appointment is not until mid April. I'll keep you

> > posted once I see my doctor.

> >

> > Iris

> >

> > --- Terry ding wrote:

> >> Iris,

> >>

> >> Yes what you're feeling is normal for untreated

> >> Graves. Your metabolism

> >> speeds up, your pulse is probably very fast, you

> >> probably are not sleeping

> >> well and you may have shaky hands, weakness in

> your

> >> legs and arms as well.

> >>

> >> Did the doctor that diagnosed you put you on any

> >> medication? You should be

> >> on an anti thyroid drug (ATD) and possibly, if

> your

> >> heart rate is high, a

> >> beta blocker at least for a little while.

> Continuing

> >> to not treat this

> >> disease can be dangerous! Treating it with ATD's

> >> will bring your symptoms

> >> under control and start you on the road back to

> >> feeling normal.

> >>

> >> Read the archives here, there's a symptom list

> done

> >> up as a database on the

> >> site page and also in many places in the

> archives.

> >> I'm sure more of us will

> >> chime in as we read your post.

> >>

> >> Welcome, Iris--you've found a good, supportive

> group

> >> to join!

> >>

> >> Terry

> >>

> >>>

> >>> Reply-To: graves_support

> >>> Date: Wed, 27 Mar 2002 07:10:55 -0800 (PST)

> >>> To: graves_support

> >>> Subject: (unknown)

> >>>

> >>> Hi, everyone!

> >>>

> >>> I was just diagnosed with Grave's Disease a

> couple

> >> of

> >>> weeks ago. I have yet to see an Endocrinologist

> in

> >>> middle of April and don't know what to expect.

> >>>

> >>> Lately, I have been feeling over fatigue and

> lost

> >> a

> >>> lot of weight even though I have a good

> appetite.

> >> Is

> >>> this normal?

> >>>

> >>> Iris

> >>>

> __________________________________________________

> >>>

March 27, 2002

Yeah, I know it's longer than what I thought. But,

since the endocrinologist can't see me until mid

April, I will be seeing my regular doctor next week.

She said she might start me with a low dosage

medication until I see the endocrinologist.

Thanks for your concern. I'm worried, too!

--- Terry ding wrote:

> Iris,

>

> I would push the doctor's office to have him or her

> see you sooner, if

> possible. Let him know your symptoms are worsening,

> and that you're worried

> about waiting so much longer. Or, go back to the

> original doctor if you feel

> more comfortable that way. You will continue to feel

> worse and worse

> untreated, and there's simply no reason to wait 2 or

> 3 more weeks on top of

> the several weeks since your diagnosis. Sometimes

> office staff is unaware,

> when making appointments, what you're coming in for.

>

> Graves, treated, is quite manageable. Untreated it

> can be very dangerous to

> your health!

>

> Terry

>

> >

> > Reply-To: graves_support

> > Date: Wed, 27 Mar 2002 12:42:28 -0800 (PST)

> > To: graves_support

> > Subject: Re: (unknown)

> >

> > Hi, Terry!

> >

> > Thanks for answering back to my question. Yes,

> you're

> > right....I have all the symptoms you have

> mentioned!

> >

> > I haven't started any medications at this time. My

> > appointment is not until mid April. I'll keep you

> > posted once I see my doctor.

> >

> > Iris

> >

> > --- Terry ding wrote:

> >> Iris,

> >>

> >> Yes what you're feeling is normal for untreated

> >> Graves. Your metabolism

> >> speeds up, your pulse is probably very fast, you

> >> probably are not sleeping

> >> well and you may have shaky hands, weakness in

> your

> >> legs and arms as well.

> >>

> >> Did the doctor that diagnosed you put you on any

> >> medication? You should be

> >> on an anti thyroid drug (ATD) and possibly, if

> your

> >> heart rate is high, a

> >> beta blocker at least for a little while.

> Continuing

> >> to not treat this

> >> disease can be dangerous! Treating it with ATD's

> >> will bring your symptoms

> >> under control and start you on the road back to

> >> feeling normal.

> >>

> >> Read the archives here, there's a symptom list

> done

> >> up as a database on the

> >> site page and also in many places in the

> archives.

> >> I'm sure more of us will

> >> chime in as we read your post.

> >>

> >> Welcome, Iris--you've found a good, supportive

> group

> >> to join!

> >>

> >> Terry

> >>

> >>>

> >>> Reply-To: graves_support

> >>> Date: Wed, 27 Mar 2002 07:10:55 -0800 (PST)

> >>> To: graves_support

> >>> Subject: (unknown)

> >>>

> >>> Hi, everyone!

> >>>

> >>> I was just diagnosed with Grave's Disease a

> couple

> >> of

> >>> weeks ago. I have yet to see an Endocrinologist

> in

> >>> middle of April and don't know what to expect.

> >>>

> >>> Lately, I have been feeling over fatigue and

> lost

> >> a

> >>> lot of weight even though I have a good

> appetite.

> >> Is

> >>> this normal?

> >>>

> >>> Iris

> >>>

> __________________________________________________

> >>>

March 28, 2002

Hi, Elaine!

Thanks for the feedback! I'm hoping to start my

treatment next week!

Iris

--- daisyelaine@... wrote:

> Hi Iris,

> Welcome to the group. Education is very empowering

> with Graves' disease so

> learn all that you can. Muscle weakness is a common

> symptom in GD and so is

> overall fatigue. This is caused by metabolic changes

> and by the many nutrient

> deficiencies that GD causes. Once your thyroid

> hormone levels are brought

> back into the normal range, you'll feel better. And

> you might want to read up

> on the nutrient deficiencies associated with GD to

> help regain your strength.

> The most common deficiencies are in the fat soluble

> vitamins such as vitamin

> A, D, E, and K and essential fatty acids. We're also

> usually deficient in

> copper, calcium, magnesium and B vitamins. Good luck

> on your road to healing,

> Elaine

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

August 7, 2002

Where are you from??

There are many couples from the UK on this site who travel considerable

distances for Ponseti treatment. I travel with my 3 month old son to Sunderland

and I live in Northern Ireland. There are doctors in Northern Ireland who claim

to use the method but have very little experience and this is an essential

aspect, in my view. If you check the following link from University of Iowa Dr

Ponseti gives the names of a number of surgeons in UK who have trained with him

in Iowa.

www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

We like yourself had our son diagnosed on the 20 week scan - bilateral talipes -

it was fortunate as this gave us time to make all the necessary arrangements for

treatment. Ask you consultant what experience they have, how many feet they

have treated and what their success rate at avoiding serious surgery has been?

This is the only way to guarantee yourself that you will be getting the best

treatment for your son.

We travelled to Sunderland when our son was one week old and travelled almost

weekly until last week when he came out of plaster casts and is now in boots and

brace. His feet are improving all the time, it is amazing especially when the

feet look so bad the first time you see them. We do not now have to travel fro

8 weeks which is a nice break.

Philip

(unknown)

Hello everybody,

I'm new to this group. My name is , I live in the UK and am

expecting twin boys in October. One of them has been diagnosed with

unilateral talipes at the 20 week ultra sound scan.

Our doctor says that she will be using the Ponseti method which from

what I've read so far seems to be the best option. But now I hear

that some doctors claim to use the Ponseti method when they are not,

and I was wondering how I can find out who is properly trained in

this. Any advice would be greatly appreciated.

Thanks a lot,

August 7, 2002

Where are you from??

There are many couples from the UK on this site who travel considerable

distances for Ponseti treatment. I travel with my 3 month old son to Sunderland

and I live in Northern Ireland. There are doctors in Northern Ireland who claim

to use the method but have very little experience and this is an essential

aspect, in my view. If you check the following link from University of Iowa Dr

Ponseti gives the names of a number of surgeons in UK who have trained with him

in Iowa.

www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

We like yourself had our son diagnosed on the 20 week scan - bilateral talipes -

it was fortunate as this gave us time to make all the necessary arrangements for

treatment. Ask you consultant what experience they have, how many feet they

have treated and what their success rate at avoiding serious surgery has been?

This is the only way to guarantee yourself that you will be getting the best

treatment for your son.

We travelled to Sunderland when our son was one week old and travelled almost

weekly until last week when he came out of plaster casts and is now in boots and

brace. His feet are improving all the time, it is amazing especially when the

feet look so bad the first time you see them. We do not now have to travel fro

8 weeks which is a nice break.

Philip

(unknown)

Hello everybody,

I'm new to this group. My name is , I live in the UK and am

expecting twin boys in October. One of them has been diagnosed with

unilateral talipes at the 20 week ultra sound scan.

Our doctor says that she will be using the Ponseti method which from

what I've read so far seems to be the best option. But now I hear

that some doctors claim to use the Ponseti method when they are not,

and I was wondering how I can find out who is properly trained in

this. Any advice would be greatly appreciated.

Thanks a lot,

August 7, 2002

Where are you from??

There are many couples from the UK on this site who travel considerable

distances for Ponseti treatment. I travel with my 3 month old son to Sunderland

and I live in Northern Ireland. There are doctors in Northern Ireland who claim

to use the method but have very little experience and this is an essential

aspect, in my view. If you check the following link from University of Iowa Dr

Ponseti gives the names of a number of surgeons in UK who have trained with him

in Iowa.

www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

We like yourself had our son diagnosed on the 20 week scan - bilateral talipes -

it was fortunate as this gave us time to make all the necessary arrangements for

treatment. Ask you consultant what experience they have, how many feet they

have treated and what their success rate at avoiding serious surgery has been?

This is the only way to guarantee yourself that you will be getting the best

treatment for your son.

We travelled to Sunderland when our son was one week old and travelled almost

weekly until last week when he came out of plaster casts and is now in boots and

brace. His feet are improving all the time, it is amazing especially when the

feet look so bad the first time you see them. We do not now have to travel fro

8 weeks which is a nice break.

Philip

(unknown)

Hello everybody,

I'm new to this group. My name is , I live in the UK and am

expecting twin boys in October. One of them has been diagnosed with

unilateral talipes at the 20 week ultra sound scan.

Our doctor says that she will be using the Ponseti method which from

what I've read so far seems to be the best option. But now I hear

that some doctors claim to use the Ponseti method when they are not,

and I was wondering how I can find out who is properly trained in

this. Any advice would be greatly appreciated.

Thanks a lot,

August 22, 2002

Hello,

I would suppose that it would depend upon the severity & age of the child but

most are cut back to wearing the brace only during nap and night time sleeping.

Sincerely,

& Breanna

theresanb67 wrote:Hi,

My son has unilateral right clubfoot. He has been in the

brace fulltime for three months and we return to see Dr. Bush, at

ish Rite, Monday. After three months fulltime, I'm interested

to know if most children are cut back on the time in the brace. I

would appreciate any responses.

Theresa

August 22, 2002

Hello,

I would suppose that it would depend upon the severity & age of the child but

most are cut back to wearing the brace only during nap and night time sleeping.

Sincerely,

& Breanna

theresanb67 wrote:Hi,

My son has unilateral right clubfoot. He has been in the

brace fulltime for three months and we return to see Dr. Bush, at

ish Rite, Monday. After three months fulltime, I'm interested

to know if most children are cut back on the time in the brace. I

would appreciate any responses.

Theresa

August 22, 2002

Hello,

I would suppose that it would depend upon the severity & age of the child but

most are cut back to wearing the brace only during nap and night time sleeping.

Sincerely,

& Breanna

theresanb67 wrote:Hi,

My son has unilateral right clubfoot. He has been in the

brace fulltime for three months and we return to see Dr. Bush, at

ish Rite, Monday. After three months fulltime, I'm interested

to know if most children are cut back on the time in the brace. I

would appreciate any responses.

Theresa

August 22, 2002

Theresa,

It depends on the doctor, but usually with the Ponseti Method the children

go from 23/24 hours a day down to 14-16 hours a day. (Which is considered

naps and nighttime) Some doctors cut down to the 14-16 immediately after the

full 3 months (as doctor Ponseti did for us) some doctors choose to wean

them down to 14-16 gradually (Dr. Ponseti's partner, Dr. Weinstein does, I

believe). It all depends on each clubfoot case and which doctor you are

seeing.

~Holly and

(unknown)

>Hi,

>My son has unilateral right clubfoot. He has been in the

>brace fulltime for three months and we return to see Dr. Bush, at

>ish Rite, Monday. After three months fulltime, I'm interested

>to know if most children are cut back on the time in the brace. I

>would appreciate any responses.

>

>Theresa

>

August 22, 2002

Theresa,

It depends on the doctor, but usually with the Ponseti Method the children

go from 23/24 hours a day down to 14-16 hours a day. (Which is considered

naps and nighttime) Some doctors cut down to the 14-16 immediately after the

full 3 months (as doctor Ponseti did for us) some doctors choose to wean

them down to 14-16 gradually (Dr. Ponseti's partner, Dr. Weinstein does, I

believe). It all depends on each clubfoot case and which doctor you are

seeing.

~Holly and

(unknown)

>Hi,

>My son has unilateral right clubfoot. He has been in the

>brace fulltime for three months and we return to see Dr. Bush, at

>ish Rite, Monday. After three months fulltime, I'm interested

>to know if most children are cut back on the time in the brace. I

>would appreciate any responses.

>

>Theresa

>

August 22, 2002

Theresa,

It depends on the doctor, but usually with the Ponseti Method the children

go from 23/24 hours a day down to 14-16 hours a day. (Which is considered

naps and nighttime) Some doctors cut down to the 14-16 immediately after the

full 3 months (as doctor Ponseti did for us) some doctors choose to wean

them down to 14-16 gradually (Dr. Ponseti's partner, Dr. Weinstein does, I

believe). It all depends on each clubfoot case and which doctor you are

seeing.

~Holly and

(unknown)

>Hi,

>My son has unilateral right clubfoot. He has been in the

>brace fulltime for three months and we return to see Dr. Bush, at

>ish Rite, Monday. After three months fulltime, I'm interested

>to know if most children are cut back on the time in the brace. I

>would appreciate any responses.

>

>Theresa

>

August 25, 2002

I haven't even had the surgery yet, (I'm hoping to soon) So maybe I'm not the

best person to give you advice, but when I was pg with my son, I thew up 20

times a day until about a week AFTER I delivered him, I had " the runs " the whole

pg, and I was hospitalized for dehydration twice as well. I guess my point is,

maybe you will feel better after you deliver!! I sure hope so.

Kami

jks_msw wrote:Hi. I am having the same trouble and it is getting rather

depressing, to the point where I am questioning having had the

surgery. I am dumping on everything, am nauseas all the time and

throwing up daily. I am pregnant though so I am just praying it ends

when I give birth. I have been hospitalized twice for dehydration

since I can't eat but can't not eat, also due to low blood sugar.

Let me iknow if you find a solution besides a revision. Good luck to

ya. Thx, open rny 5/17/01, due date 10/17/02.

> OK, MY TURN TO VENT....I HATE DOCTORS!!!!

> I WASNT GETTING ANYWHERE WITH MY DOC SO I WENT TO SEE ANOTHER THIS

TIME AN

> ENDOCRINOLOGIST. I HAVE BEEN HAVING TROUBLE WITH MY BLOOD SUGAR

BEING TOO

> LOW AND I AM SO TIRED I CAN HARDLY PUT ONE FOOT IN FRONT OF THE

OTHER ( NO,

> IM NOT : ) AND AM SICK OF FEELING LIKE THIS. I WAITED PATIENTLY AS

I COULD

> AND CALLED THIS MORNING SINCE I HAVE ALREADY HAD 2 BREAKFAST CUZ I

WAS

> DROPPING. SHE BASICALLY TOLD ME TO WATCH WHAT I EAT CLOSER!!! I

ABOUT WENT

> THROUTH THE ROOF!!! SHE DID TELL ME THAT SOME CHEX CEREAL WITH

MILK IS

> ENOUGH TO THROW ME OFF. ANYONE ELSE IN THE SAME BOAT?

> SHE ALSO TOLD ME MY TRACE ELEMENTS CAME BACK ABNORMAL MAINLY MY

COPPER BEING

> LOW. ANYONE TAKE COPPER AND IS THERE ANY FOOD ITEM TO HELP? IM

WILLING TO

> TRY ABOUT ANYTHING AT THIS POINT

> JULIE

> P.S....MY POST OP BABY WILL BE 2 ALREADY ON THE 29TH. WHERE HAS

THE TIME

> GONE?

Children are a blessing, and a gift from the Lord. -Psalm 127:3

August 25, 2002

I haven't even had the surgery yet, (I'm hoping to soon) So maybe I'm not the

best person to give you advice, but when I was pg with my son, I thew up 20

times a day until about a week AFTER I delivered him, I had " the runs " the whole

pg, and I was hospitalized for dehydration twice as well. I guess my point is,

maybe you will feel better after you deliver!! I sure hope so.

Kami

jks_msw wrote:Hi. I am having the same trouble and it is getting rather

depressing, to the point where I am questioning having had the

surgery. I am dumping on everything, am nauseas all the time and

throwing up daily. I am pregnant though so I am just praying it ends

when I give birth. I have been hospitalized twice for dehydration

since I can't eat but can't not eat, also due to low blood sugar.

Let me iknow if you find a solution besides a revision. Good luck to

ya. Thx, open rny 5/17/01, due date 10/17/02.

> OK, MY TURN TO VENT....I HATE DOCTORS!!!!

> I WASNT GETTING ANYWHERE WITH MY DOC SO I WENT TO SEE ANOTHER THIS

TIME AN

> ENDOCRINOLOGIST. I HAVE BEEN HAVING TROUBLE WITH MY BLOOD SUGAR

BEING TOO

> LOW AND I AM SO TIRED I CAN HARDLY PUT ONE FOOT IN FRONT OF THE

OTHER ( NO,

> IM NOT : ) AND AM SICK OF FEELING LIKE THIS. I WAITED PATIENTLY AS

I COULD

> AND CALLED THIS MORNING SINCE I HAVE ALREADY HAD 2 BREAKFAST CUZ I

WAS

> DROPPING. SHE BASICALLY TOLD ME TO WATCH WHAT I EAT CLOSER!!! I

ABOUT WENT

> THROUTH THE ROOF!!! SHE DID TELL ME THAT SOME CHEX CEREAL WITH

MILK IS

> ENOUGH TO THROW ME OFF. ANYONE ELSE IN THE SAME BOAT?

> SHE ALSO TOLD ME MY TRACE ELEMENTS CAME BACK ABNORMAL MAINLY MY

COPPER BEING

> LOW. ANYONE TAKE COPPER AND IS THERE ANY FOOD ITEM TO HELP? IM

WILLING TO

> TRY ABOUT ANYTHING AT THIS POINT

> JULIE

> P.S....MY POST OP BABY WILL BE 2 ALREADY ON THE 29TH. WHERE HAS

THE TIME

> GONE?

Children are a blessing, and a gift from the Lord. -Psalm 127:3

August 25, 2002

I haven't even had the surgery yet, (I'm hoping to soon) So maybe I'm not the

best person to give you advice, but when I was pg with my son, I thew up 20

times a day until about a week AFTER I delivered him, I had " the runs " the whole

pg, and I was hospitalized for dehydration twice as well. I guess my point is,

maybe you will feel better after you deliver!! I sure hope so.

Kami

jks_msw wrote:Hi. I am having the same trouble and it is getting rather

depressing, to the point where I am questioning having had the

surgery. I am dumping on everything, am nauseas all the time and

throwing up daily. I am pregnant though so I am just praying it ends

when I give birth. I have been hospitalized twice for dehydration

since I can't eat but can't not eat, also due to low blood sugar.

Let me iknow if you find a solution besides a revision. Good luck to

ya. Thx, open rny 5/17/01, due date 10/17/02.

> OK, MY TURN TO VENT....I HATE DOCTORS!!!!

> I WASNT GETTING ANYWHERE WITH MY DOC SO I WENT TO SEE ANOTHER THIS

TIME AN

> ENDOCRINOLOGIST. I HAVE BEEN HAVING TROUBLE WITH MY BLOOD SUGAR

BEING TOO

> LOW AND I AM SO TIRED I CAN HARDLY PUT ONE FOOT IN FRONT OF THE

OTHER ( NO,

> IM NOT : ) AND AM SICK OF FEELING LIKE THIS. I WAITED PATIENTLY AS

I COULD

> AND CALLED THIS MORNING SINCE I HAVE ALREADY HAD 2 BREAKFAST CUZ I

WAS

> DROPPING. SHE BASICALLY TOLD ME TO WATCH WHAT I EAT CLOSER!!! I

ABOUT WENT

> THROUTH THE ROOF!!! SHE DID TELL ME THAT SOME CHEX CEREAL WITH

MILK IS

> ENOUGH TO THROW ME OFF. ANYONE ELSE IN THE SAME BOAT?

> SHE ALSO TOLD ME MY TRACE ELEMENTS CAME BACK ABNORMAL MAINLY MY

COPPER BEING

> LOW. ANYONE TAKE COPPER AND IS THERE ANY FOOD ITEM TO HELP? IM

WILLING TO

> TRY ABOUT ANYTHING AT THIS POINT

> JULIE

> P.S....MY POST OP BABY WILL BE 2 ALREADY ON THE 29TH. WHERE HAS

THE TIME

> GONE?

Children are a blessing, and a gift from the Lord. -Psalm 127:3

August 26, 2002

How long do most tots wear the brace for 14-16 hours a

day. Our doctor said for atleast another year (that would

be right around the time turns 2 1/2)...does

this sound like what you all have been told in Iowa?

Thanks!

Amy

August 26, 2002

Amy,

This, like most every thing our kids go through, can vary somewhat from

doctor to doctor. After wearing the brace full time (which for Jakob

was about 2 1/2 months), Dr. Weinstein had us wean the time down to naps

and bed time (I think it worked out to be about 14 hours a day). I

guess Jakob was about 15-16 months old when putting the brace on during

the day became tough as we were busy away from home quite a bit and his

naps weren't a set length of time. At that point, I stopped putting it

on during the day, but Jakob still wore it at night (about 10-12 hours)

until September 2001 at just over 3 1/2 years old. He's been completely

done with it almost a year now.

amy tiede wrote:

> How long do most tots wear the brace for 14-16 hours a

> day. Our doctor said for atleast another year (that would

> be right around the time turns 2 1/2)...does

> this sound like what you all have been told in Iowa?

> Thanks!

> Amy

August 26, 2002