thanks

[Guest guest]

,

I'm glad the responses help. The people on this list have been so extremely

helpful to me in so many situations, I've lost count. I'm glad you're here too!

Mom to Kennedy 17 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Hi all,

Just want to say thans for your understanding and support. It is not easy

for me to talk about the death of Siebe, but when I read all your responses, it

helps me a lot to give the whole situation a good place in my life.

Love,

(monique@...)

Mom of Bart (1-8-96, charge) and Siebe (3-9-98/3-9-98, HLHS)

[Guest guest]

In a message dated 8/3/99 5:44:10 AM Eastern Daylight Time,

fumfum@... writes:

<< and

deformity of the mouth (I don't kwow the word in English.) >>

Naoko,

Cleft is the English word.

My son is 7. And since he had his last open heart surgery in 1994 at

3 yrs old, he has done quite well. His CHARGE issues are relatively minor

but he does seem to have all of them.

An example would be his feeding. From ages 2-4 yrs, his major source of

nutrition was pediasure. He would sit at the dinner table and eat small

amounts of food. He would eat anything except meat. I don't think he liked

the texture. One day he decided he didn't like the pediasure and the dr. and

I decided to see how he would do without it. He has done okay. He weighs 39

pounds and is 43 " tall (although I think he has had a growth spurt because

his legs seem longer).

Even now there are foods he just refuses to eat. But the boy can put away a

Mc's hamburger very easily.

has had speech therapy including feeding therapy for about 3 years

now. The therapist works with him on chewing, moving the food around in his

mouth, and then swallowing. So, to and everyone, I don't think it's

too early to talk to the speech therapist about feeding issues. I firmly

believe that the earlier we get started, the easier it is for our kids to

*get it*. I never realized that speech therapy included feeding issues.

Janet

Wife to Matt

Mom to & (CHaRGEr) 7, nne 2,

Mom to 1, and 23 months.

Weymouth, Massachusetts

[Guest guest]

Naoko,

You seem to do quite well in English. I understand all that you say. If you

ever don't understand anything, all I can tell you is to print the note

someone writes you and get it translated. This list is so great to get

information. Alot of these moms know more than the doctors and can probably

help you figure things out before them because of their experiences with

thewir children.

WELCOME!!

Foley

mom to , (CHARGE guy in heaven) Jillian cHaRGE 16 months

[Guest guest]

Janet,

I keep forgetting to tell you, everyone who looks at the picture I took of

your family at the pool thinks that is my son, . They look just

alike. Same size too. I sent that picture to you. (i think, or it's in a

envelope waiting to be sent sitting on my counter, I ran out of stamps)

Foley

[Guest guest]

Try going to http://www.gy.com they have software that has English and

Japanese on the same screen as in translations and for buttons and controls.

Rick

Husband of Lissa

Dad to Conor 20 months With ChARGE

Step Dad to Mallory 14, 7

> ----------

> From: Naoko Kondou[sMTP:fumfum@...]

> Sent: Tuesday, August 03, 1999 4:44 AM

> To: CHARGEonelist

> Subject: Thanks

>

>

>

> Hello,

>

> Thank you for being welcomed.

>

> My daughter Shoko has some problems. Hard of hearing, visual fault,

> heart disease, deformity of the ear, face nerve paralysis, and

> deformity of the mouth (I don't kwow the word in English.) etc.

>

> Now I can get important information here.

> Thank you, all !!

>

>

> Naoko

> Wife to Shuichi

> Mom to Fumitaka 3,Shoko (CHARGE)10months

>

>

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

[Guest guest]

,

Yes, we recieved the picture, thank you so much. We didn't bring our camera

and planned on buying one of those disposable ones, but never did. So, we

have *NO* pictures from the conference except for the ones you sent us!

I loved the picture of Jillian.

Janet

[Guest guest]

, I know this is a sensitive subject BUT...if you don't mind my asking:

I note that you have had 2 kiddos with CHARGE. I also know they are

searching for a gene, etc. I am interested in this aspect of CHARGE because

of the implications of, could my unaffected daughter be a gene carrier, and

my son who has CHARGE, etc etc...and I know fraternal twins can have just 1

affected, etc. so what is the scoop here, as far as you understand it? Do

you think 1 of you carries a gene, or do you think it is a fluke that happens

in development, or what? Thanks Barbra Mousouris

[Guest guest]

Barbra,

I am very strongly opinionated on that. I could be wrong or one day we may

find I am right. Who knows. But one thing I can tell you for sure is it's NOT

a fluke that happens once. (I am proof of that, as is Jen katapodis, as is a

mom that gave up a CHARGE girlfor adoption at the nursing home was in,

she had 3 CHARGE kids, )

My personal opinion, wrong or not, is recessive, Jeff and I are both carriers

and I completely believe is a carrier because of his missing incisor

teeth and tiny testicles that are seldom in his scrotum!!! (coincidence) I

seriously doubt it!!!! Anyone reading this remember, it's a personal opinion

and NOT backed up medically(I had to throw that in there Meg)

Foley

Mom to 4 in 2 weeks, CHARGE guy in heaven and Jillian 16 months

w cHaRGE, and 16 yr old niece

[Guest guest]

Rick,

Thanks, I've been looking at the Microsoft site to find something with no

luck at all...

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>Try going to http://www.gy.com they have software that has English and

>Japanese on the same screen as in translations and for buttons and

controls.

>

>

>Rick

>Husband of Lissa

>Dad to Conor 20 months With ChARGE

>Step Dad to Mallory 14, 7

>

>

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

>> From: Naoko Kondou[sMTP:fumfum@...]

>> Sent: Tuesday, August 03, 1999 4:44 AM

>> To: CHARGEonelist

>> Subject: Thanks

>>

>>

>>

>> Hello,

>>

>> Thank you for being welcomed.

>>

>> My daughter Shoko has some problems. Hard of hearing, visual fault,

>> heart disease, deformity of the ear, face nerve paralysis, and

>> deformity of the mouth (I don't kwow the word in English.) etc.

>>

>> Now I can get important information here.

>> Thank you, all !!

>>

>>

>> Naoko

>> Wife to Shuichi

>> Mom to Fumitaka 3,Shoko (CHARGE)10months

>>

>>

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

[Guest guest]

I am seeing if this will let me send messages.

I cannot receive any messages.

[Guest guest]

Thanks to all who gave me the information for the

vibrating alarm clock. I will be receiving it Friday

to test is out this weekend. I bought the clock that

flashes with the vibrating. I know Aubree will be

excited about it.

Thanks,

Wells

[Guest guest]

,

I bet that getting up will be a lot more easier and fun with the new fancy

clock! You'll have to let us know how Aubree reacted the first time it went

off!

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>

>

>Thanks to all who gave me the information for the

>vibrating alarm clock. I will be receiving it Friday

>to test is out this weekend. I bought the clock that

>flashes with the vibrating. I know Aubree will be

>excited about it.

>

>

>Thanks,

>

> Wells

>

>

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

[Guest guest]

Barb, Susie, Elva and all:

Thanks for your inspirational, supportive and helpful posts. I feel a little

better now emotionally.

To answer your questions, the dietician put me on a low-carb, low-cholesterol

diet that allows 3 carbs for breakfast, 3 for lunch, 3 for dinner and then one

2-carb snack either mid-morning or mid-afternoon and one 1-carb snack in the

evening if I feel the need. I'm also limited to 5 oz. of meat or meat

substitute (eggs, fish, cheese, etc.) I do very well when I make my own meals,

but eating out is a challenge as restaurant portions are larger than they should

be and it's hard to judge. I think I'm following the diet as closely as I can,

and have increase my exercise.

Walking and dancing are about the only forms of exercise I KNOW I can and will

stick with. Since I don't have a dancing partner right now *:-(* it's been just

walking, but I take a brisk, 20- to 30-minute arm-swinging walk at least every

other day. Eventually I want to be doing it every day. Since I live in the

snow belt, and I don't wish to use winter as an excuse to not walk, I'm planning

to take advantage of the fact that the local malls here open early for walkers.

That plus I'm going to try to get myself into an aqua aerobics class. I tried

that once and it was fun!

As for what kind of monitoring I'm doing, I do finger-stick tests twice a day,

but am wondering if anyone knows which times of day would be most useful for

testing. I've been doing tests first thing in the morning and then either right

before dinner (or as we say around here, " supper " ) or if I'm not home at that

time, right before bed. As for HbA1C tests, my dr. did one the day he diagnosed

me, but how often should they be done?

Thanks in advance for all your help,

Warm regards,

in WI

[Guest guest]

:

I am on a diet similar to the one you are on. I am on 1800 calories per

day and have done very, very well. Since January, I have lost 48 pounds

and am just two pounds from my goal of 165 pounds. I walk every day and

usually twice per day. Sometimes, I walk a third time, walking in the

afternoon with my wife, and then again after dinner. I live in Southern

California and should be able to walk all year. I walk in the morning

every day too. I check BGs when I get up in the morning and then two

hours after dinner. That way, I can find out how my blood sugar is

getting back to normal after eating my biggest meal of the day. I have

one ounce of protein for breakfast, two for lunch and three for dinner

so dinner is the biggest meal of the day for me. BGs are averaging 85

for the last fourteen days and, two months ago when I had my last HbA1c

test it was 5.3. In March, when I was diagnosed it was 9.0. I think

that it is supposed to be taken every three months till it is in the

normal range and then every six months thereafter. Cholesterol has gone

down to 135 from 185 during this time. I am now off of blood pressure

medicine too. I feel wonderful, actually better than I had been feeling

for the last few years and have more energy than ever.

I wish you good luck. I know that others on the list, including me,

were just as confused as you were and it will all get easier and more

understandable as time goes on. Keep in mind, also, that if you are

able to control the blood sugar levels you will also prevent the side

effects of the illness.

Have a wonderful weekend and I hope everyone on the list has a wonderful

holiday too.

Love Erwin

[Guest guest]

>

>

>To answer your questions, the dietician put me on a low-carb,

>low-cholesterol diet that allows 3 carbs for breakfast, 3 for lunch, 3 for

>dinner and then one 2-carb snack either mid-morning or mid-afternoon and

>one 1-carb snack in the evening if I feel the need.

That comes to 180 grams of carbohydrate each day. I don't know about anyone

else, but that sounds only moderate carb to me, not low carb.

>

>

>As for what kind of monitoring I'm doing, I do finger-stick tests twice a

>day, but am wondering if anyone knows which times of day would be most

>useful for testing. I've been doing tests first thing in the morning and

>then either right before dinner (or as we say around here, " supper " ) or if

>I'm not home at that time, right before bed.

I test fasting (first thing AM) and 2 hours after at least one meal each day

(usually supper). You might try switching your second test around during

the week, so that you aren't getting the same time frame each day. You'll

have a better idea of how you do throughout the day that way.

Keep on doing what works!

Robin G.

The untrue never is; the true never isn't.

Krishna

[Guest guest]

No body's dumb around here. Sometimes we don't pay attention is all.

>

>

>

>Boy, am I dumb.

>

[Guest guest]

Boy, am I dumb.

Rasmussen wrote:

>To answer your questions, the dietician put me on a low-carb,

>low-cholesterol diet that allows 3 carbs for breakfast, 3 for lunch, 3 for

>dinner and then one 2-carb snack either mid-morning or mid-afternoon and

>one 1-carb snack in the evening if I feel the need.

And Robin G. responded:

<< That comes to 180 grams of carbohydrate each day. I don't know about

anyone

else, but that sounds only moderate carb to me, not low carb. >>

Gee ... I was thinking grams - not exchanges (thinking it was a Dr.

Bernstein program).

... you're still at 165 grams of carbs a day, even if you skip that

evening snack. There's enough accumulated experience with using diet as our

primary treatment to say that you won't really notice the benefit until you

cut the carb intake down to beneath 100 grams daily. I appreciate your

dietitian's willingness to buck the high-carb dogma of the " other ADA "

(American Dietitic Association), but she is being too conservative.

The bottom line is ... it's our eyes ... it's our kidneys ... it's our feet

.... it's our hearts. The only way I can see 165-180 grams of carbs a day

working is if you have achieved normal weight and you exercise every day.

Susie

Susie

[Guest guest]

, it sounds like you're on the right track. You're lucky you've got a

doctor who appreciates low carbing.If you stick with it it'll get those BG

numbers down pretty fast. And your exercise program sounds just fine. Mall

walking in bad weather is a great idea. I bring my earphones and listen to a

book on tape while I'm doing it -- makes exercise a lot more interesting.

(My local library has lots of books on tape). As far as testing -- well,

being the compulsive type, I test a lot - before every meal and between meals

too. This gives me a very clear picture of where I am. Of course, not

everyone can afford to buy all those strips -- I've got excellent coverage

(90% on supplies) so I can do it.

HbA1C tests should be done every three months. Vicki

In a message dated 99-11-20 18:59:59 EST, you write:

<<

To answer your questions, the dietician put me on a low-carb,

low-cholesterol diet that allows 3 carbs for breakfast, 3 for lunch, 3 for

dinner and then one 2-carb snack either mid-morning or mid-afternoon and one

1-carb snack in the evening if I feel the need. I'm also limited to 5 oz. of

meat or meat substitute (eggs, fish, cheese, etc.) I do very well when I

make my own meals, but eating out is a challenge as restaurant portions are

larger than they should be and it's hard to judge. I think I'm following the

diet as closely as I can, and have increase my exercise.

Walking and dancing are about the only forms of exercise I KNOW I can and

will stick with. Since I don't have a dancing partner right now *:-(* it's

been just walking, but I take a brisk, 20- to 30-minute arm-swinging walk at

least every other day. Eventually I want to be doing it every day. Since I

live in the snow belt, and I don't wish to use winter as an excuse to not

walk, I'm planning to take advantage of the fact that the local malls here

open early for walkers. That plus I'm going to try to get myself into an

aqua aerobics class. I tried that once and it was fun!

As for what kind of monitoring I'm doing, I do finger-stick tests twice a

day, but am wondering if anyone knows which times of day would be most useful

for testing. I've been doing tests first thing in the morning and then

either right before dinner (or as we say around here, " supper " ) or if I'm not

home at that time, right before bed. As for HbA1C tests, my dr. did one the

day he diagnosed me, but how often should they be done?

>>

[Guest guest]

When I do the math it comes out to 12 carbs per day. Am I missing something?

In a message dated 99-11-21 18:16:05 EST, you write:

<<

>

>

>To answer your questions, the dietician put me on a low-carb,

>low-cholesterol diet that allows 3 carbs for breakfast, 3 for lunch, 3 for

>dinner and then one 2-carb snack either mid-morning or mid-afternoon and

>one 1-carb snack in the evening if I feel the need.

That comes to 180 grams of carbohydrate each day. I don't know about anyone

else, but that sounds only moderate carb to me, not low carb.

>>

[Guest guest]

In a message dated 11/21/1999 9:47:02 PM Pacific Standard Time,

WHIMSY2@... writes:

<< When I do the math it comes out to 12 carbs per day. Am I missing

something?

>>

You are thinking of 12 grams when they mean 12 servings which is 15 grams per

serving I believe. You are not the first person who was confused by this.

Meniowl@...

[Guest guest]

Susie and Group:

I am on a diet similar to the one is on with three servings of

carbs at each meal. It definitely isn't low carb, but measured carbs in

my opinion. It does, however, work very well for me. Blood Glucose

readings are averaging 85. I check when I get up in the morning, around

six and two hours after dinner. HbA1c three months ago was 5.3 and I am

going to get it checked again next month. Cholesterol was 135 three

months ago. I checked it again last Monday and will get the results

tomorrow. Some can't control BGs on this diet, but I seem to be doing

well. I am also walking lots and I am sure that helps too.

Erwin

[Guest guest]

Erwin, I read your earlier post, and you indeed seem to be doing fine ...

your HbA1c and b.g.'s and your cholesterol, etc. The amount of carbohydrates

that we are able to handle seems related to how much pancreas function we

stilll have. I'm in my early 50s now, and believe I have been diabetic since

childhood. (Although unaware of the diabetes, I unwittingly held it at bay

for so long by dieting and athletics.) There are other diabetics who must

keep their carb intake beneath 50 grams daily. If we can find an approach

that works, that's what this is all about. Glad to hear you're doing so

well!

Susie

[Guest guest]

Two questions for Erwin, and anyone else on a higher carb program:

1) Do you ever test 1 1/2 to 2 hours after a meal to see if there's a carb

spike? The spike would probably be fairly brief, so the test window is

important, and wouldn't necessarily show up in your Hba1c.

2) Do you ever get hypo? like 4-5 hours after eating? I ask this because I

found that the carb spike will bring on a low.

Thanks,

Barb (where it's snowing like crazy, thank heavens!)

--------------

http://www.rainbowfarm.com new photos!

RAINBOW FARM UNLTD.

Breeding Premium Warmbloods,

Thoroughbreds, and fancy Welsh ponies.

Re: thanks

>

>

>Susie and Group:

>I am on a diet similar to the one is on with three servings of

>carbs at each meal. It definitely isn't low carb, but measured carbs in

>my opinion. It does, however, work very well for me. Blood Glucose

>readings are averaging 85. I check when I get up in the morning, around

>six and two hours after dinner. HbA1c three months ago was 5.3 and I am

>going to get it checked again next month. Cholesterol was 135 three

>months ago. I checked it again last Monday and will get the results

>tomorrow. Some can't control BGs on this diet, but I seem to be doing

>well. I am also walking lots and I am sure that helps too.

> Erwin

>

>

[Guest guest]

Barb:

I have on occasion tested in one and a half hour after dinner instead of

two hours. I normally test two hours after I START dinner and

sometimes, if the dinner is a long one it is just an hour or so after

finishing eating. Sometimes I lose track of when I start eating and

accidentally check early. The highest reading I have had over the last

couple of months was 146 and that was one and a half hours after

starting the meal and, it was one of those days when I went out to

breakfast and had eggs and stuff so I had cereal, milk, fruit and cheese

for dinner. I felt that the high bg reading was because I only had one

ounce of protien with the cereal. BG readings are nearly always below

110 two hours after dinner. The time it was 146 I checked it again

about half hour later and it was below 110.

Erwin