Hello

January 20, 2003

Thanks for all your help Ian.

Would you have a list or know of one somewhere where they have

guidelines for being on the LID in the UK?

I think milk/butter are going to be the most difficult things to

live without & i use these things mostly at breakfast so I can see

myself skipping breakfast unless I can use peanut butter on my

toast. Would that be ok?

Many thanks for your help again - its good to know someone on this

side of the pond who understands our diets and how the NHS system

works.

Kathy

> Hi Kathy

> > With regards to the LID nobody has mentioned it to me - I did

ask my

> > registrar and he told me that I didn't have to follow it as it

> > didn't make much difference. Should i follow it anyway?

>

> Ask him if he can cite any evidence to back up his statement.

There is no

> doubt whatsoever that a high intake of stable (non radioactive)

iodine will

> protect the thyroid from RAI, and iodide /iodate tablets are

manufactured for

> use in conditions of nuclear emergencies. You are in exactly the

opposite

> situation and want as much RAI as possible to be taken up in your

thyroid,

> hence the LID.

>

> The LID is far less important in the UK because our salt is not

iodised, so a

> great many of the restrictions that apply to most of the people on

this list

> don't apply to us.

>

> Fish, dairy (milk, cheese, eggs etc), vitamin & mineral tablets,

Red food

> colour (erythrosine - as in cocktail cherries, salami & spam) are

probably

> the worst offenders in the UK diet.

>

> Ian

>

> Ian Adam

> Radiation Safety Officer

> The Institute of Cancer Research

> Cotswold Road

> Sutton

> Surrey

> SM2 5NG

> Tel: 020 8722 4250

> Fax: 020 8722 4300

> EMail: iana@i...

January 21, 2003

Kathy

Try the British Thyroid Association on

http://www.british-thyroid-association.org

Then go to: Information for Patients

Then go right down to: Thyroid Cancer.Patient Information Book 3

THINGS YOU NEED TO KNOW ABOUT RADIO-IODINE ABLATION TREATMENT

Peanut butter seems to be OK.

Ian

> Thanks for all your help Ian.

>

> Would you have a list or know of one somewhere where they have

> guidelines for being on the LID in the UK?

>

> I think milk/butter are going to be the most difficult things to

> live without & i use these things mostly at breakfast so I can see

> myself skipping breakfast unless I can use peanut butter on my

> toast. Would that be ok?

>

> Many thanks for your help again - its good to know someone on this

> side of the pond who understands our diets and how the NHS system

> works.

>

> Kathy

>

> > Hi Kathy

> > > With regards to the LID nobody has mentioned it to me - I did

> ask my

> > > registrar and he told me that I didn't have to follow it as it

> > > didn't make much difference. Should i follow it anyway?

> >

> > Ask him if he can cite any evidence to back up his statement.

> There is no

> > doubt whatsoever that a high intake of stable (non radioactive)

> iodine will

> > protect the thyroid from RAI, and iodide /iodate tablets are

> manufactured for

> > use in conditions of nuclear emergencies. You are in exactly the

> opposite

> > situation and want as much RAI as possible to be taken up in your

> thyroid,

> > hence the LID.

> >

> > The LID is far less important in the UK because our salt is not

> iodised, so a

> > great many of the restrictions that apply to most of the people on

> this list

> > don't apply to us.

> >

> > Fish, dairy (milk, cheese, eggs etc), vitamin & mineral tablets,

> Red food

> > colour (erythrosine - as in cocktail cherries, salami & spam) are

> probably

> > the worst offenders in the UK diet.

> >

> > Ian

> >

> > Ian Adam

> > Radiation Safety Officer

> > The Institute of Cancer Research

> > Cotswold Road

> > Sutton

> > Surrey

> > SM2 5NG

> > Tel: 020 8722 4250

> > Fax: 020 8722 4300

> > EMail: iana@i...

>

> This e-mail support group is one of many free services of ThyCa: Thyroid

Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do not

wish to belong to this group, you may UNSUBSCRIBE by

> sending a blank e-mail to:

> thyca-unsubscribe

>

January 21, 2003

Kathy

Try the British Thyroid Association on

http://www.british-thyroid-association.org

Then go to: Information for Patients

Then go right down to: Thyroid Cancer.Patient Information Book 3

THINGS YOU NEED TO KNOW ABOUT RADIO-IODINE ABLATION TREATMENT

Peanut butter seems to be OK.

Ian

> Thanks for all your help Ian.

>

> Would you have a list or know of one somewhere where they have

> guidelines for being on the LID in the UK?

>

> I think milk/butter are going to be the most difficult things to

> live without & i use these things mostly at breakfast so I can see

> myself skipping breakfast unless I can use peanut butter on my

> toast. Would that be ok?

>

> Many thanks for your help again - its good to know someone on this

> side of the pond who understands our diets and how the NHS system

> works.

>

> Kathy

>

> > Hi Kathy

> > > With regards to the LID nobody has mentioned it to me - I did

> ask my

> > > registrar and he told me that I didn't have to follow it as it

> > > didn't make much difference. Should i follow it anyway?

> >

> > Ask him if he can cite any evidence to back up his statement.

> There is no

> > doubt whatsoever that a high intake of stable (non radioactive)

> iodine will

> > protect the thyroid from RAI, and iodide /iodate tablets are

> manufactured for

> > use in conditions of nuclear emergencies. You are in exactly the

> opposite

> > situation and want as much RAI as possible to be taken up in your

> thyroid,

> > hence the LID.

> >

> > The LID is far less important in the UK because our salt is not

> iodised, so a

> > great many of the restrictions that apply to most of the people on

> this list

> > don't apply to us.

> >

> > Fish, dairy (milk, cheese, eggs etc), vitamin & mineral tablets,

> Red food

> > colour (erythrosine - as in cocktail cherries, salami & spam) are

> probably

> > the worst offenders in the UK diet.

> >

> > Ian

> >

> > Ian Adam

> > Radiation Safety Officer

> > The Institute of Cancer Research

> > Cotswold Road

> > Sutton

> > Surrey

> > SM2 5NG

> > Tel: 020 8722 4250

> > Fax: 020 8722 4300

> > EMail: iana@i...

>

> This e-mail support group is one of many free services of ThyCa: Thyroid

Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do not

wish to belong to this group, you may UNSUBSCRIBE by

> sending a blank e-mail to:

> thyca-unsubscribe

>

January 21, 2003

Kathy

Try the British Thyroid Association on

http://www.british-thyroid-association.org

Then go to: Information for Patients

Then go right down to: Thyroid Cancer.Patient Information Book 3

THINGS YOU NEED TO KNOW ABOUT RADIO-IODINE ABLATION TREATMENT

Peanut butter seems to be OK.

Ian

> Thanks for all your help Ian.

>

> Would you have a list or know of one somewhere where they have

> guidelines for being on the LID in the UK?

>

> I think milk/butter are going to be the most difficult things to

> live without & i use these things mostly at breakfast so I can see

> myself skipping breakfast unless I can use peanut butter on my

> toast. Would that be ok?

>

> Many thanks for your help again - its good to know someone on this

> side of the pond who understands our diets and how the NHS system

> works.

>

> Kathy

>

> > Hi Kathy

> > > With regards to the LID nobody has mentioned it to me - I did

> ask my

> > > registrar and he told me that I didn't have to follow it as it

> > > didn't make much difference. Should i follow it anyway?

> >

> > Ask him if he can cite any evidence to back up his statement.

> There is no

> > doubt whatsoever that a high intake of stable (non radioactive)

> iodine will

> > protect the thyroid from RAI, and iodide /iodate tablets are

> manufactured for

> > use in conditions of nuclear emergencies. You are in exactly the

> opposite

> > situation and want as much RAI as possible to be taken up in your

> thyroid,

> > hence the LID.

> >

> > The LID is far less important in the UK because our salt is not

> iodised, so a

> > great many of the restrictions that apply to most of the people on

> this list

> > don't apply to us.

> >

> > Fish, dairy (milk, cheese, eggs etc), vitamin & mineral tablets,

> Red food

> > colour (erythrosine - as in cocktail cherries, salami & spam) are

> probably

> > the worst offenders in the UK diet.

> >

> > Ian

> >

> > Ian Adam

> > Radiation Safety Officer

> > The Institute of Cancer Research

> > Cotswold Road

> > Sutton

> > Surrey

> > SM2 5NG

> > Tel: 020 8722 4250

> > Fax: 020 8722 4300

> > EMail: iana@i...

>

> This e-mail support group is one of many free services of ThyCa: Thyroid

Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do not

wish to belong to this group, you may UNSUBSCRIBE by

> sending a blank e-mail to:

> thyca-unsubscribe

>

January 21, 2003

Hi

Just wanted to say hello from another Brit on this site, allbeit one

who lives in Dublin, Ireland. This is a fantastic group to belong

to, it certainly has changed my life.

I can relate to your fears about bone cancer - after my pt in '91 I

was convinced that I'd have to have to have my leg off because I

didn't know what all the aches and pains meant... It feels daft

now to think I worried like that but I know that at the time my

concerns were real ones.

Good luck with your hypo period, you'll be fine I'm sure. Where

are you having your RAI? I hope it all goes well and that you pick

up lots of advice here about how to cope and make the hypo time

easier. When I had my RAI I couldn't concentrate on any serious

reading so I spent a lot of time looking at mags with lots of

pictures. ( the gossipier the better!).

Let us know how you get on.

Best wishes

Follicular Thyca pt '91 tt '01 RAI Nov '01

January 21, 2003

Hi

Just wanted to say hello from another Brit on this site, allbeit one

who lives in Dublin, Ireland. This is a fantastic group to belong

to, it certainly has changed my life.

I can relate to your fears about bone cancer - after my pt in '91 I

was convinced that I'd have to have to have my leg off because I

didn't know what all the aches and pains meant... It feels daft

now to think I worried like that but I know that at the time my

concerns were real ones.

Good luck with your hypo period, you'll be fine I'm sure. Where

are you having your RAI? I hope it all goes well and that you pick

up lots of advice here about how to cope and make the hypo time

easier. When I had my RAI I couldn't concentrate on any serious

reading so I spent a lot of time looking at mags with lots of

pictures. ( the gossipier the better!).

Let us know how you get on.

Best wishes

Follicular Thyca pt '91 tt '01 RAI Nov '01

June 14, 2003

,

Sorry this reply is late. I hope you got on there and had a good walk

or jog! Like you said, getting on is the hardest part. That's why I try

to always make myself go at least 10 min. Once I have gone that I

almost always go more.

Take care,

Gena

> Well had a good day. I ate great and I am now trying to drag myself

> towards the treadmill. I worked form 9-6 and I am pretty tired but I

> will get on and walk a few miles. The hardest part is getting on the

> machine. lol wish me luck. Today I would much rather have a nap.

>

June 14, 2003

,

Sorry this reply is late. I hope you got on there and had a good walk

or jog! Like you said, getting on is the hardest part. That's why I try

to always make myself go at least 10 min. Once I have gone that I

almost always go more.

Take care,

Gena

> Well had a good day. I ate great and I am now trying to drag myself

> towards the treadmill. I worked form 9-6 and I am pretty tired but I

> will get on and walk a few miles. The hardest part is getting on the

> machine. lol wish me luck. Today I would much rather have a nap.

>

June 14, 2003

,

Sorry this reply is late. I hope you got on there and had a good walk

or jog! Like you said, getting on is the hardest part. That's why I try

to always make myself go at least 10 min. Once I have gone that I

almost always go more.

Take care,

Gena

> Well had a good day. I ate great and I am now trying to drag myself

> towards the treadmill. I worked form 9-6 and I am pretty tired but I

> will get on and walk a few miles. The hardest part is getting on the

> machine. lol wish me luck. Today I would much rather have a nap.

>

November 30, 2003

Hi Barb,

Thank you for the welcome! You were one of those people who made the

diet work for us! You have so much knowledge. It's nice to see you

still here. How is Jake?

Peace~

> You are more than welcome as far as I'm concerned, and I look

forward to learning more about what you have tried. There is also an

epilepsy kids list that you might find interesting, as well as

another list I used to be on that was for people w/ seizures who used

alternative treatments....can't remember the name but I will try to

get it to you....

> Barb Swoyer, Jake's mom (still here, still on the diet)

> hello

>

> Hi everyone,

> I was a member of this list while my daughter Marissa was on the

> diet. We did it for almost 2 years with good success. Marissa

is no

> longer on the diet and does still have seizures, but drastically

less

> than she used to.

> We deal with seizures homeopathically and have been taking

Marissa

> for accupuncture treatments for 4 months now.

> So the reason I am here is that I remember there were a lot of

people

> doing alternative treatments on this list. And I feel as though

I am

> floundering around all alone because Marissa does not take any

drugs

> ( the exception is diastat, which we avoid unless absolutely

> necessary). Most people think I'm a complete nut. You know,

they

> just nod and smile and hope I will go away.

> So does anyone know of a list that supports parents of children

with

> special needs that practice alternative health? If not can I

hang

> out here a little? I'm sure I can help with keto questions as

well.

>

> Peace~

> Jen

>

> PS Hi Nan! <waving> remember me?

>

November 30, 2003

Hi Barb,

Thank you for the welcome! You were one of those people who made the

diet work for us! You have so much knowledge. It's nice to see you

still here. How is Jake?

Peace~

> You are more than welcome as far as I'm concerned, and I look

forward to learning more about what you have tried. There is also an

epilepsy kids list that you might find interesting, as well as

another list I used to be on that was for people w/ seizures who used

alternative treatments....can't remember the name but I will try to

get it to you....

> Barb Swoyer, Jake's mom (still here, still on the diet)

> hello

>

> Hi everyone,

> I was a member of this list while my daughter Marissa was on the

> diet. We did it for almost 2 years with good success. Marissa

is no

> longer on the diet and does still have seizures, but drastically

less

> than she used to.

> We deal with seizures homeopathically and have been taking

Marissa

> for accupuncture treatments for 4 months now.

> So the reason I am here is that I remember there were a lot of

people

> doing alternative treatments on this list. And I feel as though

I am

> floundering around all alone because Marissa does not take any

drugs

> ( the exception is diastat, which we avoid unless absolutely

> necessary). Most people think I'm a complete nut. You know,

they

> just nod and smile and hope I will go away.

> So does anyone know of a list that supports parents of children

with

> special needs that practice alternative health? If not can I

hang

> out here a little? I'm sure I can help with keto questions as

well.

>

> Peace~

> Jen

>

> PS Hi Nan! <waving> remember me?

>

November 30, 2003

Wow, that's a big compliment! You are too kind and I'm not sure I can measure

up to those words!!

Glad to hear that the seizures are lessened. We did homeopathic treatment for

about 2 years, but didn't seem to get anywhere with it. Now we have been doing

craniosacral therapy for about a year....love it....and I think it helps. If

nothing else it completely relaxes Jake - we go once or twice a week for an

hour. They've even started treating me (stress/migraines, etc)and I'm hooked

too!

Unfortunately, little Jake has had better times. Good news is that we haven't

seen a drop seizure in 8 weeks. Bad news is that he's having GTC just about

every morning, averaging 2-3 a day. We have an MRI/MRS scheduled for next week

and also an appt. w/ a new neuro who specializes in mitochondrial disorders and

muscle disease....we'll see. Our neuro wants us to see him

Anyway, other than that he's okay. Just turned 8 on Thanksgiving day. Getting

so big - and I think it gets a bit harder as he gets older....

Stick around

Barb Swoyer

hello

>

> Hi everyone,

> I was a member of this list while my daughter Marissa was on the

> diet. We did it for almost 2 years with good success. Marissa

is no

> longer on the diet and does still have seizures, but drastically

less

> than she used to.

> We deal with seizures homeopathically and have been taking

Marissa

> for accupuncture treatments for 4 months now.

> So the reason I am here is that I remember there were a lot of

people

> doing alternative treatments on this list. And I feel as though

I am

> floundering around all alone because Marissa does not take any

drugs

> ( the exception is diastat, which we avoid unless absolutely

> necessary). Most people think I'm a complete nut. You know,

they

> just nod and smile and hope I will go away.

> So does anyone know of a list that supports parents of children

with

> special needs that practice alternative health? If not can I

hang

> out here a little? I'm sure I can help with keto questions as

well.

>

> Peace~

> Jen

>

> PS Hi Nan! <waving> remember me?

>

November 30, 2003

Wow, that's a big compliment! You are too kind and I'm not sure I can measure

up to those words!!

Glad to hear that the seizures are lessened. We did homeopathic treatment for

about 2 years, but didn't seem to get anywhere with it. Now we have been doing

craniosacral therapy for about a year....love it....and I think it helps. If

nothing else it completely relaxes Jake - we go once or twice a week for an

hour. They've even started treating me (stress/migraines, etc)and I'm hooked

too!

Unfortunately, little Jake has had better times. Good news is that we haven't

seen a drop seizure in 8 weeks. Bad news is that he's having GTC just about

every morning, averaging 2-3 a day. We have an MRI/MRS scheduled for next week

and also an appt. w/ a new neuro who specializes in mitochondrial disorders and

muscle disease....we'll see. Our neuro wants us to see him

Anyway, other than that he's okay. Just turned 8 on Thanksgiving day. Getting

so big - and I think it gets a bit harder as he gets older....

Stick around

Barb Swoyer

hello

>

> Hi everyone,

> I was a member of this list while my daughter Marissa was on the

> diet. We did it for almost 2 years with good success. Marissa

is no

> longer on the diet and does still have seizures, but drastically

less

> than she used to.

> We deal with seizures homeopathically and have been taking

Marissa

> for accupuncture treatments for 4 months now.

> So the reason I am here is that I remember there were a lot of

people

> doing alternative treatments on this list. And I feel as though

I am

> floundering around all alone because Marissa does not take any

drugs

> ( the exception is diastat, which we avoid unless absolutely

> necessary). Most people think I'm a complete nut. You know,

they

> just nod and smile and hope I will go away.

> So does anyone know of a list that supports parents of children

with

> special needs that practice alternative health? If not can I

hang

> out here a little? I'm sure I can help with keto questions as

well.

>

> Peace~

> Jen

>

> PS Hi Nan! <waving> remember me?

>

December 29, 2003

-

Just wanted to send you baby dust and hope that this cycle is the one

for you! I have a close friend who recently gave birth - she m/c and

conceived again very quickly, with out getting a visit from AF. I

hope this will be the case for you.

Crossing everything for you-

fused UD

December 29, 2003

-

Just wanted to send you baby dust and hope that this cycle is the one

for you! I have a close friend who recently gave birth - she m/c and

conceived again very quickly, with out getting a visit from AF. I

hope this will be the case for you.

Crossing everything for you-

fused UD

April 4, 2004

In a message dated 4/3/2004 12:30:25 PM Eastern Daylight Time,

sassysarkin@... writes:

Hi.....I have a 9 yr old son...Nate .... sens/neural hearing loss mild to mod

in lt ear mod to severe in rt ear ... he is struggling w/ 3rd grade... hate

reading and writing.... hates his hearing aids..... hates me for making him

wear hearing aids..... it is a very unhappy time in our home... he has had

aids since he was 4 yrs old and we have gone through various periods of wearing

the aids most of the time and to only in school not at home..... he has had

the same pair since he was 4 ... and so now this week we will be trying out

new ones .... any suggestions.... on any thing ..... IEP was yest also....

he was not gettting resource room for reading and i demanded it also looking

for a reading tutor .... on their recccommendation shouldn't the school

district pay for that.....

Thanks that is alot of questions for my first email sorry.......

Ours was a different set of circumstances but our son also struggled and

dealt with frustration and depression caused by the circumstances at about that

age. One of the things I did was to find a psychologist for him, someone familar

with HOH kids and that our pediatirican (we adore him) recommended. I'm not

one to rush out for therapy, but my happy well-adjusted son was sullen and

fretful and worried me terribly. Ian has always loved his aides, so that was not

an issue. It was the atmosphere at school that was the cause of his troubles,

but that did not make it any easier for him to deal with.

Ian felt he was stupid, that no matter how hard he tried he would never be

able to do well in school. His self esteem was almost nonexistent. His teacher

was a main source of that idea. She was undermining SpecEd services that were

mandated in his IEP and insisting he should be medicated and/or held back. It

was a very bad time.

I felt that if he had someone to talk with who was not us, his parents, that

would be helpful. And it did. There was no need or recommendation for a

life-time of therapy, only about a half dozen sessions. He talked, he vented, he

learned some coping skills to use when he got frustrated. The doctor met with us

(both parents) a couple times to help us understand what he needed. It was a

good choice for him.

No one ever teased or harassed our son at school for his aides. Is Nate

getting teased? Our Ian always had a small core group of friends and they would

stick together all the time. I think that helped to insulate him from being

hassled.

I'd also check into the suggestions everyone else made about the hardware --

are his aides serving him well?

I'd also do what you've already done and demand the resources he needs to get

up-to-speed academically. And yes, the school should be providing this

service. If he has been falling behind while the school was denying to provide

those

services, then I would argue that the district should also be

providing/paying the tutor since they created the need by continually ignoring

your son's

needs.

Best -- Jill

April 4, 2004