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Rosemary,

Hi. It's nice to hear from someone else who has a child with NF2. Up until

two months ago I had never heard of NF. We did ask Nick's neurosurgeon how

long he thought he had the tumor in his neck. He told us probably a long

time since they are supposed to be slow growing tumors. How long is a long

time in a six year old? He said the tumor in Nick's neck was probably there

as long as the tumor in his eye. We found out Nick had something wrong with

his eye when he was six months old so either he was born with it or it

happened some time before he was six months old.

I think part of the reason the geneticist at the NF clinic told us to learn

sign language was because she was just trying to think of things to tell us.

She really didn't tell me much more than I had already learned via the

internet. I wonder sometimes how much the doctors know about NF2. It was

kind of hard to hear the doctor say we could need sign language. I am still

in the process of accepting that Nick has NF2. I was looking out the window

at the hospital NF2 clinic while we were waiting to see the doctor and

wishing we weren't there. Will things ever get back to normal?

It is difficult trying to decide how much to tell Nick about his having NF2.

My mother-in-law said she didn't think we should tell him much. That's hard

to do when he hears us talking with doctors and other people about it. I

think he does need to know he has it. I wouldn't not want to tell him about

it like it was something to be ashamed about. I don't want to get into a

lot of details about it with him either. He's only six years old. He

asked me the other night if the tumor that was taken out of his neck could

grow back. I told him it could, but we didn't think it would. When he

first found out he had a tumor in his neck he couldn't understand it. He

thought everybody should have a tumor in their neck. He has asked why we

need to learn sign language, too. So we are giving him some information,

but not too much. What have you told your son?

Take care,

New member

> welcome to the crew.

> I have a7 year old son, youngest of three, who is also a new genetic

> alteration.

> We have a very similar story. Diagnosed around the same time, and the

> geneticists also said presumptive Nf2 and a specialist at an Nf clinic

said

> via email " almost certain Nf2 " .

> Louis has eye symptoms as well as two meningiomas (one excised in August

and

> second to be removed on Dec.5).They are/were huge!!!!

>

> I'm wondering if your surgeons passed any comment on how long Nick's

tumors

> had been growing??

>

> Our first clue to any of this was Louis having headaches over a period of

> weeks back in July. Apart from this, louis is a very exuberant,

mischievous,

> energetic and gorgeous ratbag......

>

> Your drs recommendation for the family to learn sign language infuriates

> me....whilst i think learning sign language should be taught in all

schools

> and in itself is a very valuable thing, in this context, I consider it

to

> be a pathetic, premature admission of incompetence. How dare they!!!

> This would only make sense to me if Nick already had advanced An's for

which

> surgery seemed extremely complicated.

>

> Every one needs hope, parents in particular.

> Whilst I'm praying for a cure and a stay on further complications, I'm

also

> actively searching and ASKING for it far and wide.

>

> I believe this is a very curable disorder, but I think like everything in

> life, if you don't work towards to it, it isn't going to fall into your

> lap.

> Sorry, I'm a little strident this morning, i can be quite nice, I

> promise.....

> feel free to email me privately, i guess i would like to chat about how

much

> to communicate to the children.....they are so young, and it is a

different

> situation to children who are familiar with Nf2 from their own family.

> rosemary.

>

>

>

>

>

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Rosemary,

Hi. It's nice to hear from someone else who has a child with NF2. Up until

two months ago I had never heard of NF. We did ask Nick's neurosurgeon how

long he thought he had the tumor in his neck. He told us probably a long

time since they are supposed to be slow growing tumors. How long is a long

time in a six year old? He said the tumor in Nick's neck was probably there

as long as the tumor in his eye. We found out Nick had something wrong with

his eye when he was six months old so either he was born with it or it

happened some time before he was six months old.

I think part of the reason the geneticist at the NF clinic told us to learn

sign language was because she was just trying to think of things to tell us.

She really didn't tell me much more than I had already learned via the

internet. I wonder sometimes how much the doctors know about NF2. It was

kind of hard to hear the doctor say we could need sign language. I am still

in the process of accepting that Nick has NF2. I was looking out the window

at the hospital NF2 clinic while we were waiting to see the doctor and

wishing we weren't there. Will things ever get back to normal?

It is difficult trying to decide how much to tell Nick about his having NF2.

My mother-in-law said she didn't think we should tell him much. That's hard

to do when he hears us talking with doctors and other people about it. I

think he does need to know he has it. I wouldn't not want to tell him about

it like it was something to be ashamed about. I don't want to get into a

lot of details about it with him either. He's only six years old. He

asked me the other night if the tumor that was taken out of his neck could

grow back. I told him it could, but we didn't think it would. When he

first found out he had a tumor in his neck he couldn't understand it. He

thought everybody should have a tumor in their neck. He has asked why we

need to learn sign language, too. So we are giving him some information,

but not too much. What have you told your son?

Take care,

New member

> welcome to the crew.

> I have a7 year old son, youngest of three, who is also a new genetic

> alteration.

> We have a very similar story. Diagnosed around the same time, and the

> geneticists also said presumptive Nf2 and a specialist at an Nf clinic

said

> via email " almost certain Nf2 " .

> Louis has eye symptoms as well as two meningiomas (one excised in August

and

> second to be removed on Dec.5).They are/were huge!!!!

>

> I'm wondering if your surgeons passed any comment on how long Nick's

tumors

> had been growing??

>

> Our first clue to any of this was Louis having headaches over a period of

> weeks back in July. Apart from this, louis is a very exuberant,

mischievous,

> energetic and gorgeous ratbag......

>

> Your drs recommendation for the family to learn sign language infuriates

> me....whilst i think learning sign language should be taught in all

schools

> and in itself is a very valuable thing, in this context, I consider it

to

> be a pathetic, premature admission of incompetence. How dare they!!!

> This would only make sense to me if Nick already had advanced An's for

which

> surgery seemed extremely complicated.

>

> Every one needs hope, parents in particular.

> Whilst I'm praying for a cure and a stay on further complications, I'm

also

> actively searching and ASKING for it far and wide.

>

> I believe this is a very curable disorder, but I think like everything in

> life, if you don't work towards to it, it isn't going to fall into your

> lap.

> Sorry, I'm a little strident this morning, i can be quite nice, I

> promise.....

> feel free to email me privately, i guess i would like to chat about how

much

> to communicate to the children.....they are so young, and it is a

different

> situation to children who are familiar with Nf2 from their own family.

> rosemary.

>

>

>

>

>

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Rosemary,

Hi. It's nice to hear from someone else who has a child with NF2. Up until

two months ago I had never heard of NF. We did ask Nick's neurosurgeon how

long he thought he had the tumor in his neck. He told us probably a long

time since they are supposed to be slow growing tumors. How long is a long

time in a six year old? He said the tumor in Nick's neck was probably there

as long as the tumor in his eye. We found out Nick had something wrong with

his eye when he was six months old so either he was born with it or it

happened some time before he was six months old.

I think part of the reason the geneticist at the NF clinic told us to learn

sign language was because she was just trying to think of things to tell us.

She really didn't tell me much more than I had already learned via the

internet. I wonder sometimes how much the doctors know about NF2. It was

kind of hard to hear the doctor say we could need sign language. I am still

in the process of accepting that Nick has NF2. I was looking out the window

at the hospital NF2 clinic while we were waiting to see the doctor and

wishing we weren't there. Will things ever get back to normal?

It is difficult trying to decide how much to tell Nick about his having NF2.

My mother-in-law said she didn't think we should tell him much. That's hard

to do when he hears us talking with doctors and other people about it. I

think he does need to know he has it. I wouldn't not want to tell him about

it like it was something to be ashamed about. I don't want to get into a

lot of details about it with him either. He's only six years old. He

asked me the other night if the tumor that was taken out of his neck could

grow back. I told him it could, but we didn't think it would. When he

first found out he had a tumor in his neck he couldn't understand it. He

thought everybody should have a tumor in their neck. He has asked why we

need to learn sign language, too. So we are giving him some information,

but not too much. What have you told your son?

Take care,

New member

> welcome to the crew.

> I have a7 year old son, youngest of three, who is also a new genetic

> alteration.

> We have a very similar story. Diagnosed around the same time, and the

> geneticists also said presumptive Nf2 and a specialist at an Nf clinic

said

> via email " almost certain Nf2 " .

> Louis has eye symptoms as well as two meningiomas (one excised in August

and

> second to be removed on Dec.5).They are/were huge!!!!

>

> I'm wondering if your surgeons passed any comment on how long Nick's

tumors

> had been growing??

>

> Our first clue to any of this was Louis having headaches over a period of

> weeks back in July. Apart from this, louis is a very exuberant,

mischievous,

> energetic and gorgeous ratbag......

>

> Your drs recommendation for the family to learn sign language infuriates

> me....whilst i think learning sign language should be taught in all

schools

> and in itself is a very valuable thing, in this context, I consider it

to

> be a pathetic, premature admission of incompetence. How dare they!!!

> This would only make sense to me if Nick already had advanced An's for

which

> surgery seemed extremely complicated.

>

> Every one needs hope, parents in particular.

> Whilst I'm praying for a cure and a stay on further complications, I'm

also

> actively searching and ASKING for it far and wide.

>

> I believe this is a very curable disorder, but I think like everything in

> life, if you don't work towards to it, it isn't going to fall into your

> lap.

> Sorry, I'm a little strident this morning, i can be quite nice, I

> promise.....

> feel free to email me privately, i guess i would like to chat about how

much

> to communicate to the children.....they are so young, and it is a

different

> situation to children who are familiar with Nf2 from their own family.

> rosemary.

>

>

>

>

>

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  • 3 weeks later...

well alot of us went back on the monday after Thanksgiving.. oh welcome by

the way... i figure this.. last holidays i gained ten pounds so if i can

lose up till Christmas i am way ahead of where i was last year..at least i

have a good head start.. and after ten days back on i feel much better and

have way more energy . and besides its a healthy way to eat and stay away

from all the temptations.. but its up to you if you dont want to do it you

wont .. you have to want to get clean and healthy more than you want those

Christmas treats.. so my vote is yes you have almost three weeks to get

back on track if thats what you want to do . if not you can always start

after.. but.. think of all the bad stuff you will pass up if you start now

:)

catherine

-----

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well alot of us went back on the monday after Thanksgiving.. oh welcome by

the way... i figure this.. last holidays i gained ten pounds so if i can

lose up till Christmas i am way ahead of where i was last year..at least i

have a good head start.. and after ten days back on i feel much better and

have way more energy . and besides its a healthy way to eat and stay away

from all the temptations.. but its up to you if you dont want to do it you

wont .. you have to want to get clean and healthy more than you want those

Christmas treats.. so my vote is yes you have almost three weeks to get

back on track if thats what you want to do . if not you can always start

after.. but.. think of all the bad stuff you will pass up if you start now

:)

catherine

-----

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well alot of us went back on the monday after Thanksgiving.. oh welcome by

the way... i figure this.. last holidays i gained ten pounds so if i can

lose up till Christmas i am way ahead of where i was last year..at least i

have a good head start.. and after ten days back on i feel much better and

have way more energy . and besides its a healthy way to eat and stay away

from all the temptations.. but its up to you if you dont want to do it you

wont .. you have to want to get clean and healthy more than you want those

Christmas treats.. so my vote is yes you have almost three weeks to get

back on track if thats what you want to do . if not you can always start

after.. but.. think of all the bad stuff you will pass up if you start now

:)

catherine

-----

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Welcome to the list, Janice!

The holidays ARE a hard time to diet, but then it will be even harder to

lose the 15-20 pounds you are liable to put on during this month! Why not

do induction for a week to get back on track and then it might give you the

incentive to keep it up...what an accomplishment it would be to overcome

this season! Whatever you decide to do, this group is a great support...I

am like you, can't even conceive of keeping this up during such an enticing

time. What I have made up my mind to do though, is to walk everyday (3

miles at least) in the hopes that I won't GAIN....and January 1, 2001 will

be NO ORE EXCUSES day...

Joya in Honduras who lost and gained 25 pounds too....

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Welcome to the list, Janice!

The holidays ARE a hard time to diet, but then it will be even harder to

lose the 15-20 pounds you are liable to put on during this month! Why not

do induction for a week to get back on track and then it might give you the

incentive to keep it up...what an accomplishment it would be to overcome

this season! Whatever you decide to do, this group is a great support...I

am like you, can't even conceive of keeping this up during such an enticing

time. What I have made up my mind to do though, is to walk everyday (3

miles at least) in the hopes that I won't GAIN....and January 1, 2001 will

be NO ORE EXCUSES day...

Joya in Honduras who lost and gained 25 pounds too....

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  • 4 weeks later...

Protein is certainly a big player in this diet, but so are low carb veggies.

Being able to not worry so much about fat also lets you make some wonderful

sauces. Without the carby stuff, all your dinner plate is really missing is

a big pile of flavourless mush! ;)

CelebrateLowCarb on egroups is a great recipe resource on egroups. You

don't get daily emails, just 2 themed recipe digests every month. The

archives are wonderful and can be searched.

There are tons of great recipes available on the web. I would suggest that

you always double check the carb count on them though. Sometimes typos,

misconceptions or different brands used can really impact what the true

count of the recipe is. It's worth the 5 minutes it takes to verify what

you are about to put in you mouth :)

Kirstie

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In a message dated 1/5/01 3:41:03 PM Eastern Standard Time,

dawnbluemoon@... writes:

<< Are you not aware that many in the nutrition field consider the Atkins

diet to be dangerous? IF NOT FOLLOWED APPROPRIATELY, it can lead to major

organ damage (namely kidneys). >>

Sorry but the Kidney damage warning is a myth. Too much protein can

be hard on an already ill kidney but protein will not cause a kidney to

become damaged. Hate to burst your bubble.

aka Nurse Jen (Terry's name for me) :-)

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In a message dated 1/5/01 3:41:03 PM Eastern Standard Time,

dawnbluemoon@... writes:

<< Are you not aware that many in the nutrition field consider the Atkins

diet to be dangerous? IF NOT FOLLOWED APPROPRIATELY, it can lead to major

organ damage (namely kidneys). >>

Sorry but the Kidney damage warning is a myth. Too much protein can

be hard on an already ill kidney but protein will not cause a kidney to

become damaged. Hate to burst your bubble.

aka Nurse Jen (Terry's name for me) :-)

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I am sure that you wouldn't like being compared to the savage cannibals who

eat only meat because you don't eat as many veggies as I do.

Here are two definitions I found for cannibal.....

A person who eats the flesh of other human beings.

An animal that feeds on others of its own kind.

Since I am not eating other Atkids, I hardly find this comparison appropriate.

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I am sure that you wouldn't like being compared to the savage cannibals who

eat only meat because you don't eat as many veggies as I do.

Here are two definitions I found for cannibal.....

A person who eats the flesh of other human beings.

An animal that feeds on others of its own kind.

Since I am not eating other Atkids, I hardly find this comparison appropriate.

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Didn't I read that modified low-carb - without ketosis was suggested for

children with autism, or am I confusing this with something else?

I've only read about it being for seizure control.....here's an article....

http://www.vanderbilt.edu/AnS/psychology/health_psychology/ketogenic_diets.htm

Never heard about it being for Autistics let me know if you have an article

about that.....that would an interesting read.

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Didn't I read that modified low-carb - without ketosis was suggested for

children with autism, or am I confusing this with something else?

I've only read about it being for seizure control.....here's an article....

http://www.vanderbilt.edu/AnS/psychology/health_psychology/ketogenic_diets.htm

Never heard about it being for Autistics let me know if you have an article

about that.....that would an interesting read.

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I'd be bored too if I ate meat all the time .. so I don't ... I eat eggs and

cheese and salmon and tuna and every fish imagineable and pork (mmmmmmm the

best white meat!) and chicken and turkey and veal and venison (if someone

will send me some) and more eggs and cheese and ..... and every now and then

I'll give in and have meat.

I think mental attitude is so important here. People have happily dieted

eating far less, like the grapefruit diet.... ummm to me that IS BORING!

This is a great list to get ideas for recipes and such..

tink

<<I am sort of confused because eating meat a lot seems it would get dull.

>>

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Jerome,

LOL and not laughing at the same time. Wish I had thought of that

earlier (a few years ago) when my (now ex) daughter-in-law (who was basically

a vegetarian) took 6 of my grandchildren and joined a religious cult.

Haven't seen those children for years and one is now already 16, the baby

is 5. Haven't seen any of them for almost 5 years.

Makes sense to me also.

Dwen

Jerome Tan wrote:

No, without meat doesn't make you dull, without

meat is more dangerous, it

really makes you dumb. Did you ever noticed why those cults don't

allow

their followers to eat meat? Well, some says that lack of Vitamin

B12 from

the meat really make one dumb, and it's easy to control those cult

followers.

Not yet scientifically proven, but the explanation seems logical.

regards/

Jerome Tan

jtan@...

Mobile: +639175277928

new member

> Greetings all,

>

> I after reading the Atkins book, I though I'd give it a try,

I am

> sort of confused because eating meat a lot seems it would get

dull. I

> do notice the cravings all go away and that sure helps, any advice?

>

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Jerome,

LOL and not laughing at the same time. Wish I had thought of that

earlier (a few years ago) when my (now ex) daughter-in-law (who was basically

a vegetarian) took 6 of my grandchildren and joined a religious cult.

Haven't seen those children for years and one is now already 16, the baby

is 5. Haven't seen any of them for almost 5 years.

Makes sense to me also.

Dwen

Jerome Tan wrote:

No, without meat doesn't make you dull, without

meat is more dangerous, it

really makes you dumb. Did you ever noticed why those cults don't

allow

their followers to eat meat? Well, some says that lack of Vitamin

B12 from

the meat really make one dumb, and it's easy to control those cult

followers.

Not yet scientifically proven, but the explanation seems logical.

regards/

Jerome Tan

jtan@...

Mobile: +639175277928

new member

> Greetings all,

>

> I after reading the Atkins book, I though I'd give it a try,

I am

> sort of confused because eating meat a lot seems it would get

dull. I

> do notice the cravings all go away and that sure helps, any advice?

>

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Share on other sites

Okay, from someone who seemingly is challenged daily, I can understand the

desire for carbs, but my question would be " weren't you eating meat before? "

You aren't necessarily eating more meat, you are eating less carbs. The

best advice is always have something easy to fix/eat available and vary what

you eat for meat so you don't get bored if you think that will be a problem

for you.

Jean

190/142/135

12/7/98

Re: new member

No, without meat doesn't make you dull, without meat is more dangerous, it

really makes you dumb. Did you ever noticed why those cults don't allow

their followers to eat meat? Well, some says that lack of Vitamin B12 from

the meat really make one dumb, and it's easy to control those cult

followers.

Not yet scientifically proven, but the explanation seems logical.

regards/

Jerome Tan

jtan@...

Mobile: +639175277928

new member

> Greetings all,

>

> I after reading the Atkins book, I though I'd give it a try, I am

> sort of confused because eating meat a lot seems it would get dull. I

> do notice the cravings all go away and that sure helps, any advice?

Link to comment
Share on other sites

Okay, from someone who seemingly is challenged daily, I can understand the

desire for carbs, but my question would be " weren't you eating meat before? "

You aren't necessarily eating more meat, you are eating less carbs. The

best advice is always have something easy to fix/eat available and vary what

you eat for meat so you don't get bored if you think that will be a problem

for you.

Jean

190/142/135

12/7/98

Re: new member

No, without meat doesn't make you dull, without meat is more dangerous, it

really makes you dumb. Did you ever noticed why those cults don't allow

their followers to eat meat? Well, some says that lack of Vitamin B12 from

the meat really make one dumb, and it's easy to control those cult

followers.

Not yet scientifically proven, but the explanation seems logical.

regards/

Jerome Tan

jtan@...

Mobile: +639175277928

new member

> Greetings all,

>

> I after reading the Atkins book, I though I'd give it a try, I am

> sort of confused because eating meat a lot seems it would get dull. I

> do notice the cravings all go away and that sure helps, any advice?

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