Re: what do you think?

[Guest guest]

Mgfevig,

It takes time for they tap to do it's job, and a lot more time than you've

given it before starting to switch doses around. Generally we are started on

a high dose, and that dose is reduced after several months, when bloodwork

shows we've moved into normal range, and monitored and changed at the most

in one-month intervals after that--your body need time to settle in to a

dosage. Wild swings would necessarily accompany changing the dose

constantly. Are you doing this under the care of a doc who is dictating the

dosage changes based on concrete proof that you need to change? What are

your test numbers?

While I've never been on synthroid, I know from many here that it's no day

at the beach, as it doesn't produce exactly the same hormone your body

would, and many people seem to struggle to find alternatives that work

better for them. I'd give the tap a chance in a logical manner, first. You

can achieve euthyroid state on it, and feel quite normal.

Terry

>

> Reply-To: graves_support

> Date: Fri, 27 Sep 2002 01:07:59 -0000

> To: graves_support

> Subject: What do you think?

>

> Hi, I'm still new to this. Diagnosed 2 months ago during a thyroid

> storm. Have be on Tap and have to keep adjusting the dose. I still

> don't feel great. Up one week and then down the next. My chest

> hurts, and my heart rate is up again. Do you think that this will

> all level off, so that I will be able to take the same meds? Is

> this just par for the game.

>

> What do you think about having the surgery? If I was on synthroid

> would I still have these swings of high and low?

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

>

[Guest guest]

Mgfevig,

It takes time for they tap to do it's job, and a lot more time than you've

given it before starting to switch doses around. Generally we are started on

a high dose, and that dose is reduced after several months, when bloodwork

shows we've moved into normal range, and monitored and changed at the most

in one-month intervals after that--your body need time to settle in to a

dosage. Wild swings would necessarily accompany changing the dose

constantly. Are you doing this under the care of a doc who is dictating the

dosage changes based on concrete proof that you need to change? What are

your test numbers?

While I've never been on synthroid, I know from many here that it's no day

at the beach, as it doesn't produce exactly the same hormone your body

would, and many people seem to struggle to find alternatives that work

better for them. I'd give the tap a chance in a logical manner, first. You

can achieve euthyroid state on it, and feel quite normal.

Terry

>

> Reply-To: graves_support

> Date: Fri, 27 Sep 2002 01:07:59 -0000

> To: graves_support

> Subject: What do you think?

>

> Hi, I'm still new to this. Diagnosed 2 months ago during a thyroid

> storm. Have be on Tap and have to keep adjusting the dose. I still

> don't feel great. Up one week and then down the next. My chest

> hurts, and my heart rate is up again. Do you think that this will

> all level off, so that I will be able to take the same meds? Is

> this just par for the game.

>

> What do you think about having the surgery? If I was on synthroid

> would I still have these swings of high and low?

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

>

[Guest guest]

Mgfevig,

It takes time for they tap to do it's job, and a lot more time than you've

given it before starting to switch doses around. Generally we are started on

a high dose, and that dose is reduced after several months, when bloodwork

shows we've moved into normal range, and monitored and changed at the most

in one-month intervals after that--your body need time to settle in to a

dosage. Wild swings would necessarily accompany changing the dose

constantly. Are you doing this under the care of a doc who is dictating the

dosage changes based on concrete proof that you need to change? What are

your test numbers?

While I've never been on synthroid, I know from many here that it's no day

at the beach, as it doesn't produce exactly the same hormone your body

would, and many people seem to struggle to find alternatives that work

better for them. I'd give the tap a chance in a logical manner, first. You

can achieve euthyroid state on it, and feel quite normal.

Terry

>

> Reply-To: graves_support

> Date: Fri, 27 Sep 2002 01:07:59 -0000

> To: graves_support

> Subject: What do you think?

>

> Hi, I'm still new to this. Diagnosed 2 months ago during a thyroid

> storm. Have be on Tap and have to keep adjusting the dose. I still

> don't feel great. Up one week and then down the next. My chest

> hurts, and my heart rate is up again. Do you think that this will

> all level off, so that I will be able to take the same meds? Is

> this just par for the game.

>

> What do you think about having the surgery? If I was on synthroid

> would I still have these swings of high and low?

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

>

[Guest guest]

Hi Mgfevig,

Unfortunately, I had a storm too , so I know it does take time for us. Since

you are only a 2 months now, that would be about when I did start to see the

possibility of better things to come.

The anti thyroid drugs can only prevent new excess hormone from being made,

and all that extra we had, just has to be used up by the body. This takes

some only a couple of weeks, but the books say 4 to 8 weeks. I felt the

beginning of change at 3 weeks, but only at 8 weeks did I know the extra was

gone.

Why have you gone up and down? Your dose should only have been lowed VERY

slowly, so your body does not go into shock from the change in the dose, and

go nuts on you.

If you have not done so yet, call the doctors office and request they send

you paper copies of your lab results. Then you will be able to see what is

going on, and we can help you understand them.

The dose would normally only have been adjusted once, perhaps twice by now.

Before you make a permanent decision about removing a vital gland, you

should get stable, and give yourself time to learn all the pros and cons of

living without a thyroid. As it is now, you can not think properly, since

hyper and hypo affects us mentally as much , if not more, than if affects

our bodies.

Some people do fine on Synthoid, but that is a gamble. What if your not one

of them ? You can't go back.

The anti thyroid drugs offer the chance of remission and a working gland. We

are looking at the rest of your life here..so take your time.

You were probably told , as I was..you will never go into remission..we all

hear this..but IF you choose to learn all about your thyroid, change your

lifestyle and diet, remission can very well happen. But just taking a pill

and doing nothing else...in my opinion..is the reason remission rates in

this country are so low.

I took my ATDs ( anti thyroid drugs ) for three years, but after I got

serious, changed my diet, added supplements, learned to say NO to others

demands, it was only an additional 6 months..and remission is MINE !

There are several others here in remission also.

Plus, we have many that are on ATDs long term. This is a good option too.

Just having access to a computer, and groups like this, already puts YOU way

ahead of me. I was on my own for several years before I got this wonderful

machine.

-Pam L - hoping we get your name...that was hard to spell :-)

[Guest guest]

.. Am I wrong for wanting to find another therapist instead of sticking it out with my current one?

-.

um, no! You have the right to change DR' as often as needed.

a C

[Guest guest]

.. Am I wrong for wanting to find another therapist instead of sticking it out with my current one?

-.

um, no! You have the right to change DR' as often as needed.

a C

[Guest guest]

.. Am I wrong for wanting to find another therapist instead of sticking it out with my current one?

-.

um, no! You have the right to change DR' as often as needed.

a C

[Guest guest]

Hi Tiffani,

That's so great you got the information to future dh and he came

around! You won't be trying it... you'll be doing it! We won't let you

just try it lol! As long as you're here you'll have support and

information to help you with any problems you *may* have but it will

probably be smooth sailing so you won't need us :~} As far as the u/s

pictures... it couldn't hurt... but there's not a lot they can tell from

u/s pictures and until the feet can be seen in person and

manipulated. After birth there is little if not no need for x-rays

either. Even then, other than just doing the castings there's little way

to tell what the outcome will be.

Keep this in mind however, from all I've read and even quoted by Dr.

Ponseti the feet can always be corrected with this casting technique. I

have not yet heard of a foot that wasn't corrected with casting. Keeping

them corrected is where you get the 5% and that accounts for the feet that

need some kind of major surgery. And almost always, it'll be a surgery

that's done after the age of 3 or 4 (the ATTT surgery which is much less

invasive than the others). If you get baby into proper casts soon after

birth (you can give it a few days - go ahead and enjoy your babymoon and

rest up) you will not see failure in correction. Then make sure you wear

the brace as prescribed by Dr. Ponseti - 23/7 for 3 mo, then 18, 16, 14,

and 12 hr's/day till she's 3 or 4 depending on severity.

There are things that need to be done in this process to make it

successful, keep in mind the Dr. is only a small part of the process. Once

the casts are off the foot is corrected. It's up to the parents to keep it

that way - and the brace is the key. Most if not nearly all relapses can

be attributed to parental non-compliance with bracing, as according to Dr.

Ponseti. We are also seeing now that early discarding of the brace is also

a factor with relapses. There will be the very few who still have some

kind of relapse or a form of atypical clubfoot that might require

additional casting or special bracing. And possible surgery in the future

but the incidence rate for this is very low. Not worth you worrying about

actually - if it happens it happens and you deal with it but in all

likelihood you daughter will not have these difficulties so relax and enjoy

the rest of your pregnancy knowing that she'll be corrected and walking and

happy.

I know it all sounds so monumental - and I don't want to diminish your

concern or dismiss you feeling like it's all very intense... and also the

sadness I know you have at thinking your daughter isn't *perfect*. We have

all gone through that and it's a totally valid feeling. But know that it

will be ok - you will be able to deal with it and very likely she will

never have to feel like she's different or that there's much at all wrong

with her foot. You wouldn't believe Darbi's foot... I know not every CF

child ends up with this but her foot is absolutely PERFECT! It looks

almost exactly like her other foot - all except for a little extra skin on

the ankle. She uses it just like her other foot, walked a month earlier

than one of her brothers, 5 months earlier than the other and has NO IDEA

she can't do anything with that foot. Even if she did relapse someday, at

least she has been able to live a normal baby life so far, climbing on

stuff and running around and doing whatever she wants because her foot is

straight and doesn't hurt and isn't in casts after invasive

surgeries. What more could a baby ask for? hehe...

If you sub to the CFPics list I will send some pics of her feet for

you. We're only 16mo into this treatment but are soooo pleased with the

results. Our daughter is going to be just fine, just fine! And she can

even wear cute shoes :~}

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

At 09:36 AM 8/17/2004, you wrote:

>I went to the doctor today for a checkup on my pregnancy. Well I

>mentioned that I found a doctor that does the Ponseti Method and we

>decided we would try that (I convinced my fiance YAY!!!!!). Well

>the doctor suggested I bring in Dr. Noonan's email address and she

>would email him pictures of the foot from ultrasound. What a great

>idea I thought!! Do you think this would be helpful for him at this

>stage when he can't do anything about it? Any advice would be

>appreciated!

>

>Tiffani

>Due November 15, 2004

>Baby girl, LCF

>

[Guest guest]

Thank you very much for responding! I was thinking along the same

lines as you are with the idea of it not being much good. I did

email Dr. Noonan to see what his thoughts were about that also. I

also asked if he would come to the hospital shortly after birth to

do the casting asap. I would rather get her first cast on and

adjust to her with it on instead of adjusting without it and then

adjusting all over again. EH, either way I get my baby

Only reason I said we were giving this a " try " is for my fiance's

sake. He is still a bit pessimistic about this method even though I

have " sold " him on the idea. He agrees we should " try " the non-

invasive route first and then if that's doesn't work (which I'm

confident it will) we will go another route. I told him I just

couldn't live with myself as a mother and tell my child later that

she had surgery just because I couldn't handle the casts or the

brace. How would that make me feel if I didn't at least " try? " So

we're " trying " it out.

I'm really excited about pretty shoes! I was really worried at

first but then the more I thought about it... our baby will be a

winter baby. If we go out at all in the first 3 months she will be

covered up because it will be cold. Many people won't even know she

has CF even though I don't care if they do know. Not like I'm going

to introduce her and say " this is my daughter, she has club foot. "

Just not going to happen lol.

Again thanks for your advice and I'll be sure to check in again when

I get a reply from Dr. Noonan. I'm going to set up a consult with

him pretty soon so we can learn more about casting and the process

before hand.

Tiffani

> >I went to the doctor today for a checkup on my pregnancy. Well I

> >mentioned that I found a doctor that does the Ponseti Method and

we

> >decided we would try that (I convinced my fiance YAY!!!!!). Well

> >the doctor suggested I bring in Dr. Noonan's email address and she

> >would email him pictures of the foot from ultrasound. What a

great

> >idea I thought!! Do you think this would be helpful for him at

this

> >stage when he can't do anything about it? Any advice would be

> >appreciated!

> >

> >Tiffani

> >Due November 15, 2004

> >Baby girl, LCF

> >

[Guest guest]

Tiffani,

Regarding what you said about what other people think when they see

the casts...

Unbelievably enough, I started out completely unashamed of Evan's

casts and made no effort to cover them up or anything. However, so

many people stared at him in stores and then turned to GLARE at me,

that I started draping a blanket across his legs--in August! I

think they thought I had dropped him, or let him fall, or done some

other stupid thing. At first I wanted to say " no no no you don't

understand. " Then I got mad and would glare back at people. Then I

decided just to cover him up until those weeks went by. And they

went so quickly!!! So be prepared and take heart. It goes so

quickly.

> > >I went to the doctor today for a checkup on my pregnancy. Well I

> > >mentioned that I found a doctor that does the Ponseti Method and

> we

> > >decided we would try that (I convinced my fiance YAY!!!!!). Well

> > >the doctor suggested I bring in Dr. Noonan's email address and

she

> > >would email him pictures of the foot from ultrasound. What a

> great

> > >idea I thought!! Do you think this would be helpful for him at

> this

> > >stage when he can't do anything about it? Any advice would be

> > >appreciated!

> > >

> > >Tiffani

> > >Due November 15, 2004

> > >Baby girl, LCF

> > >

[Guest guest]

I guess if Dr. N is willing to look at it there is certainly no harm done by

showing it to him. Maybe no help either, but no harm so why not give it a go?

s.

what do you think?

I went to the doctor today for a checkup on my pregnancy. Well I

mentioned that I found a doctor that does the Ponseti Method and we

decided we would try that (I convinced my fiance YAY!!!!!). Well

the doctor suggested I bring in Dr. Noonan's email address and she

would email him pictures of the foot from ultrasound. What a great

idea I thought!! Do you think this would be helpful for him at this

stage when he can't do anything about it? Any advice would be

appreciated!

Tiffani

Due November 15, 2004

Baby girl, LCF

[Guest guest]

Tiffani,

You might want to send it to University of Iowa hospital. When we were

with Dr Ponseti last year he mentioned that they were collecting

ultrasounds of diagnosed/undiagnosed clubfoot for research purposes.

Unfortunately we never got a copy of ours at the time.

and

www.clubfoot.co.za

what do you think?

I went to the doctor today for a checkup on my pregnancy. Well I

mentioned that I found a doctor that does the Ponseti Method and we

decided we would try that (I convinced my fiance YAY!!!!!). Well

the doctor suggested I bring in Dr. Noonan's email address and she

would email him pictures of the foot from ultrasound. What a great

idea I thought!! Do you think this would be helpful for him at this

stage when he can't do anything about it? Any advice would be

appreciated!

Tiffani

Due November 15, 2004

Baby girl, LCF

[Guest guest]

Hi,

While I agree with everything you have said, I am also one of the

moms who eventually took to covering up 's casts when she was

little (can't now since it's summer and she's 11 months old!). I

don't think I did it so much to " hide " them as if I was ashamed as

to be able to get through my grocery trip, etc without having to

explain it 50 times. It has been very upsetting this time around,

the number of dirty looks and " oh, that poor baby broke her

leg " / " HOW did such a little thing break her leg?? " As if I pushed

her down the stairs! So of course as soon as I see THE look, I

immediatley say " It's not broken. She is being treated for a club

foot. " I don't know what's worse, the look of horror before they

know or the look of tremendous belief when they do know. Plus, It

breaks my heart when my older two children keep asking why everyone

thinks broke her leg. I've have nicely explained to them

that unfortunately even adults are not always considerate of other

people being different. I think they get tired of hearing me

explain it over and over again.

Marilouise

9/9/03, LCF, cast #6/2nd series, 2nd tenotomy 8/20/04

Owen and 3/20/99

> No offense but I wonder why some of you are peeved at strangers

asking about your casted or braced baby, and why you feel compelled

to " hide " the casts/brace. wore casts the first six months

of his life in a hot climate, and while I do admit I would get tired

of answering the same old questions (and hearing the same old

stories about their friend/child/relitive who had club feet or

something) - I guess I'd rather they be forthright with their

questions rather than stare from a distance wondering the worst. I

didn't know about Dr. Ponseti back then ya know - but these days

anyone who asks anything (and even some who don't) hear about the

Amazing Ponseti from Iowa City.

>

> In our search for a replacment vehicle today so we could leave to

Iowa tomorrow (tranny went out of the car yesterday) I bet we spoke

to half a dozen people about Dr. Ponseti's touch of love on

Everett's feet. It's an opportunity to educate folks and spread the

word about his work. There is no shame for a parent to tote around

a birth-defected child. Keep in mind " God doesn't make junk " .

Show off your babies, be proud, because your children all arrived

exactly the way God made them. If HE wasn't ashamed to give them to

the world why should we as parents be embarassed to expose their

feet, or annoyed to educate people away from their own ignorance?

>

> Sorry, just my humble two cents worth. 's midwife who

delivered him treated him like junk when his feet came out deformed

as if she took it personal - as if we soiled her reputation by

bearing a child with a birth defect. She disgusted me with her

attitude which really drove home in my heart that God doesn't make

junk no matter what she might think about it.

> s.

[Guest guest]

Hi,

While I agree with everything you have said, I am also one of the

moms who eventually took to covering up 's casts when she was

little (can't now since it's summer and she's 11 months old!). I

don't think I did it so much to " hide " them as if I was ashamed as

to be able to get through my grocery trip, etc without having to

explain it 50 times. It has been very upsetting this time around,

the number of dirty looks and " oh, that poor baby broke her

leg " / " HOW did such a little thing break her leg?? " As if I pushed

her down the stairs! So of course as soon as I see THE look, I

immediatley say " It's not broken. She is being treated for a club

foot. " I don't know what's worse, the look of horror before they

know or the look of tremendous belief when they do know. Plus, It

breaks my heart when my older two children keep asking why everyone

thinks broke her leg. I've have nicely explained to them

that unfortunately even adults are not always considerate of other

people being different. I think they get tired of hearing me

explain it over and over again.

Marilouise

9/9/03, LCF, cast #6/2nd series, 2nd tenotomy 8/20/04

Owen and 3/20/99

> No offense but I wonder why some of you are peeved at strangers

asking about your casted or braced baby, and why you feel compelled

to " hide " the casts/brace. wore casts the first six months

of his life in a hot climate, and while I do admit I would get tired

of answering the same old questions (and hearing the same old

stories about their friend/child/relitive who had club feet or

something) - I guess I'd rather they be forthright with their

questions rather than stare from a distance wondering the worst. I

didn't know about Dr. Ponseti back then ya know - but these days

anyone who asks anything (and even some who don't) hear about the

Amazing Ponseti from Iowa City.

>

> In our search for a replacment vehicle today so we could leave to

Iowa tomorrow (tranny went out of the car yesterday) I bet we spoke

to half a dozen people about Dr. Ponseti's touch of love on

Everett's feet. It's an opportunity to educate folks and spread the

word about his work. There is no shame for a parent to tote around

a birth-defected child. Keep in mind " God doesn't make junk " .

Show off your babies, be proud, because your children all arrived

exactly the way God made them. If HE wasn't ashamed to give them to

the world why should we as parents be embarassed to expose their

feet, or annoyed to educate people away from their own ignorance?

>

> Sorry, just my humble two cents worth. 's midwife who

delivered him treated him like junk when his feet came out deformed

as if she took it personal - as if we soiled her reputation by

bearing a child with a birth defect. She disgusted me with her

attitude which really drove home in my heart that God doesn't make

junk no matter what she might think about it.

> s.

[Guest guest]

Hi,

While I agree with everything you have said, I am also one of the

moms who eventually took to covering up 's casts when she was

little (can't now since it's summer and she's 11 months old!). I

don't think I did it so much to " hide " them as if I was ashamed as

to be able to get through my grocery trip, etc without having to

explain it 50 times. It has been very upsetting this time around,

the number of dirty looks and " oh, that poor baby broke her

leg " / " HOW did such a little thing break her leg?? " As if I pushed

her down the stairs! So of course as soon as I see THE look, I

immediatley say " It's not broken. She is being treated for a club

foot. " I don't know what's worse, the look of horror before they

know or the look of tremendous belief when they do know. Plus, It

breaks my heart when my older two children keep asking why everyone

thinks broke her leg. I've have nicely explained to them

that unfortunately even adults are not always considerate of other

people being different. I think they get tired of hearing me

explain it over and over again.

Marilouise

9/9/03, LCF, cast #6/2nd series, 2nd tenotomy 8/20/04

Owen and 3/20/99

> No offense but I wonder why some of you are peeved at strangers

asking about your casted or braced baby, and why you feel compelled

to " hide " the casts/brace. wore casts the first six months

of his life in a hot climate, and while I do admit I would get tired

of answering the same old questions (and hearing the same old

stories about their friend/child/relitive who had club feet or

something) - I guess I'd rather they be forthright with their

questions rather than stare from a distance wondering the worst. I

didn't know about Dr. Ponseti back then ya know - but these days

anyone who asks anything (and even some who don't) hear about the

Amazing Ponseti from Iowa City.

>

> In our search for a replacment vehicle today so we could leave to

Iowa tomorrow (tranny went out of the car yesterday) I bet we spoke

to half a dozen people about Dr. Ponseti's touch of love on

Everett's feet. It's an opportunity to educate folks and spread the

word about his work. There is no shame for a parent to tote around

a birth-defected child. Keep in mind " God doesn't make junk " .

Show off your babies, be proud, because your children all arrived

exactly the way God made them. If HE wasn't ashamed to give them to

the world why should we as parents be embarassed to expose their

feet, or annoyed to educate people away from their own ignorance?

>

> Sorry, just my humble two cents worth. 's midwife who

delivered him treated him like junk when his feet came out deformed

as if she took it personal - as if we soiled her reputation by

bearing a child with a birth defect. She disgusted me with her

attitude which really drove home in my heart that God doesn't make

junk no matter what she might think about it.

> s.