new member

Report post · April 15, 2001

Hello and welcome. www.missrobens.com sells alot of gf/cf sugar free mixes

you might look there. have a great day, F

new member

> hi everyone

>

> I would like to introduce myself, I am a new member to the group. I have a

3 yr old little boy with a.s.d and I have just started the gf/cf diet. He

has been on yeast free/sugar free for about 8 months and that seems to be

helping him allot, and I have definitely seen results. He also takes 8ml

nystatin a day. I am slowly taking him off of gluten and caesin and the

diet is starting to get really hard. Does anyone know of gf/cf/sugar and

yeast free biscuits?

>

> Also my husband is living out in America (Houston,Texas) and I opted to

stay here, but I have just returned from visiting him, and I am really

tempted to go,does anyone know what is like out there for families with

autistic kids, do they do great therapies and do they have good schools. We

have everything set up great here, and I am reluctant to leave it all behind

and start again.

>

> I hope you can help

>

> Emma

>

Report post · April 16, 2001

> hi everyone

Does anyone know of gf/cf/sugar and yeast free biscuits?

We have everything set up great here, and I am reluctant to leave it

all behind and start again.

>

Hi, Emma!

Welcome to the group! You should find a lot of great information

here, as well as success stories and support. My ASD son Brett is

also three!

The best gfcf, yeast free, sugar free biscuits I have found are

Kwandy's bread (aka Noah's bread). If you have a Miss Roben's

catalog, the recipe is on page 21. (If not, do a search on the

archives here- I know I've seen it posted.) I've never made this

recipe as a loaf of bread. I always put it in muffin tins and bake

it. These are my kids' favorite biscuits- my 4 older NT kids love

them!

You don't say where you live. We're in Georgia, so I can't help with

any info about Houston. I know the prospect of starting over with

therapies, etc. would be very hard with moving, but I can't imagine

trying to go through all this without a husband!

Good luck, and welcome again!

Sue

Report post · February 5, 2003

In a message dated 2/5/2003 2:01:29 AM Central Standard Time,

spoofandu@... writes:

> Hi - Just joining cfparents. My son (11) was diagnosed two years ago

> w/ CF. Physically he does pretty well. But as of late has been

> depressed. We just pulled him out of public school and are starting

> to home school. He was having an awful time at school. Bullies,

> kids taking his lunch and teachers that basically didn't care! Not

> sure he was even learning anything there. (We just moved here six

> months ago)

> Looking forward to hearing from all of you. Hope all is well on your

> end.

> skc

>

That's to bad about your son's school. Kids can be so cruel! Where do you

live? We are in Iowa and I have 3 daughter two with CF they are 10 w/CF, 8

wo/CF, 5 w/CF. You will love this group if you have any question there is

always someone here to help you. Deb A

Report post · February 5, 2003

Welcome to the list. How old is your son? We home school our oldest three.

Patti, 2 wcf, isn't quite ready for school yet. We homeschool due to some of

the learning difficulties that my older kids have. Needless to say the one on

three attention has done wonders compared to what they were getting.

You will love the list. I have been here for almost two years and it has been a

great source of help and hope for me.

Dawn mom of 4, 7 and under, the youngest wcf

new member

Hi - Just joining cfparents. My son (11) was diagnosed two years ago

w/ CF. Physically he does pretty well. But as of late has been

depressed. We just pulled him out of public school and are starting

to home school. He was having an awful time at school. Bullies,

kids taking his lunch and teachers that basically didn't care! Not

sure he was even learning anything there. (We just moved here six

months ago)

Looking forward to hearing from all of you. Hope all is well on your

end.

skc

Report post · February 5, 2003

Where do you live? I know what you are talking about with the bullies at

school. We are going through that. We are now dealing with a rumor at

school that (my oldest, 12 yrs.) is dying. He got a call Friday

night from his best friend, crying, to see if it was true. It was so sweet.

His friend said that he knew he had something but didn't know it was that

serious. The friend was fairly upset. just sat there and said

Trevor, are you crying? He said listen, I have cf. I do nebs, etc.... to

keep me healthy. I am not dying from it. The little boy must have said

something else cause said if I don't do it all, yes cf can kill me.

Anyhow, he took it alot better than I did. He just reassured the boy and

went on talking about girls, etc..

The mean time I am sitting on the couch with fumes coming out my ears.

We also have problems with kids picking on him because he is so small.

But, it helps a little to make many appearances at school - raising cane.

The kids at school now think I am some kind of ogre, but they leave my kids

alone. just says hey, do you want me to tell my mom about you? They

also know that I am not beyond calling parents personally. What can I say,

Im a protective mom. I know, I know, probably not the best way to handle

it, but for the time it works.

(my youngest, 11yrs) handles it a little differently. He gets upset,

then gets mad. He has threatened to knock a few of them on their butts.

They leave him alone for the most part. He is a little taller so I assume

he is a little more intimidating.

I have wondered about home schooling. Does anyone have any info on it? I

just never knew where to go to even start. A website or something?

Well, I will close for now. Too much stuff to get done. I need to get

working on a quilt.

Hope everyone is doing well.

Vondie

mom of & , both w/cf

Report post · February 5, 2003

Welcome Becky,

I'm sure you'll find lots of support and information as I have

Christy Mom of Wyatt 7wcf adn Hunter 2.5 wocf

> Hi,

>

> I just wanted to introduce myself and my daughter. My daughter

Seren

> (her name means 'star' in Welsh) will be 7 months old on 11th

> February, and she was diagnosed with cf at 8 days old when they

> tested her DNA. We knew cf was a possibility from 22 weeks

pregnant,

> when they found echogenic bowel on our anomaly scan.

>

> We're coping well so far, Seren had some trouble gaining weight at

> the beginning, but then they put her on SMA High Energy milk, and

> she's doing fine now. She takes daily Creon, Flucloxacillin,

Abidec

> and Alphatocopheryl Acetate, and has physiotherapy three times a

day.

>

> Hope to make some new friends!

>

> Hugs,

>

> Becky, mum to Seren wcf

Report post · February 5, 2003

welcome, you will enjoy & feel at home very quickly here

LOVE & HUGS, grandmomBEv

New Member

Hi,

I just wanted to introduce myself and my daughter. My daughter Seren

(her name means 'star' in Welsh) will be 7 months old on 11th

February, and she was diagnosed with cf at 8 days old when they

tested her DNA. We knew cf was a possibility from 22 weeks pregnant,

when they found echogenic bowel on our anomaly scan.

We're coping well so far, Seren had some trouble gaining weight at

the beginning, but then they put her on SMA High Energy milk, and

she's doing fine now. She takes daily Creon, Flucloxacillin, Abidec

and Alphatocopheryl Acetate, and has physiotherapy three times a day.

Hope to make some new friends!

Hugs,

Becky, mum to Seren wcf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

Report post · February 5, 2003

Thank you GrandMom Bev! )

Hugs!

Becky and Seren

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: RE: New Member

>Date: Wed, 5 Feb 2003 16:14:38 -0500

>

>welcome, you will enjoy & feel at home very quickly here

>

>LOVE & HUGS, grandmomBEv

>

> New Member

>

>Hi,

>

>I just wanted to introduce myself and my daughter. My daughter Seren

>(her name means 'star' in Welsh) will be 7 months old on 11th

>February, and she was diagnosed with cf at 8 days old when they

>tested her DNA. We knew cf was a possibility from 22 weeks pregnant,

>when they found echogenic bowel on our anomaly scan.

>

>We're coping well so far, Seren had some trouble gaining weight at

>the beginning, but then they put her on SMA High Energy milk, and

>she's doing fine now. She takes daily Creon, Flucloxacillin, Abidec

>and Alphatocopheryl Acetate, and has physiotherapy three times a day.

>

>Hope to make some new friends!

>

>Hugs,

>

>Becky, mum to Seren wcf

>

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

>The opinions and information exchanged on this list should IN NO WAY

>be construed as medical advice.

>

>PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

>TREATMENTS.

>

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

>

Report post · February 5, 2003

Thank you Christy, good to meet you. )

Hugs!

Becky and Seren

> "

>Reply-To: cfparents

>To: cfparents

>Subject: Re: New Member

>Date: Wed, 05 Feb 2003 21:05:09 -0000

>

>Welcome Becky,

> I'm sure you'll find lots of support and information as I have

>Christy Mom of Wyatt 7wcf adn Hunter 2.5 wocf

>

> > Hi,

> >

> > I just wanted to introduce myself and my daughter. My daughter

>Seren

> > (her name means 'star' in Welsh) will be 7 months old on 11th

> > February, and she was diagnosed with cf at 8 days old when they

> > tested her DNA. We knew cf was a possibility from 22 weeks

>pregnant,

> > when they found echogenic bowel on our anomaly scan.

> >

> > We're coping well so far, Seren had some trouble gaining weight at

> > the beginning, but then they put her on SMA High Energy milk, and

> > she's doing fine now. She takes daily Creon, Flucloxacillin,

>Abidec

> > and Alphatocopheryl Acetate, and has physiotherapy three times a

>day.

> >

> > Hope to make some new friends!

> >

> > Hugs,

> >

> > Becky, mum to Seren wcf

>

_________________________________________________________________

Stay in touch with MSN Messenger http://messenger.msn.co.uk

Report post · February 5, 2003

I love your daughter's name. By strange coincidence it is one of the names I am

using in a story I was working on. Only I spelled it with two n's. :-)

Welcome to the list.

Dawn mom of 4, 6 and under, the youngest wcf

New Member

Hi,

I just wanted to introduce myself and my daughter. My daughter Seren

(her name means 'star' in Welsh) will be 7 months old on 11th

February, and she was diagnosed with cf at 8 days old when they

tested her DNA. We knew cf was a possibility from 22 weeks pregnant,

when they found echogenic bowel on our anomaly scan.

We're coping well so far, Seren had some trouble gaining weight at

the beginning, but then they put her on SMA High Energy milk, and

she's doing fine now. She takes daily Creon, Flucloxacillin, Abidec

and Alphatocopheryl Acetate, and has physiotherapy three times a day.

Hope to make some new friends!

Hugs,

Becky, mum to Seren wcf

Report post · February 6, 2003

In a message dated 2/5/2003 7:55:28 PM Central Standard Time,

spoofandu@... writes:

>

> Hi Deb - Thanks for the welcome. We are originally

> from Maquoketa, Iowa. (between Dubuque and Davenport)

> But now live north of Kansas City Missouri.

> Looking forward to chatting with everyone

I have a sister that lives on the Kansas side of Kansas City!! Deb A

Report post · February 6, 2003

In a message dated 2/5/2003 7:55:28 PM Central Standard Time,

spoofandu@... writes:

>

> Hi Deb - Thanks for the welcome. We are originally

> from Maquoketa, Iowa. (between Dubuque and Davenport)

> But now live north of Kansas City Missouri.

> Looking forward to chatting with everyone

I have a sister that lives on the Kansas side of Kansas City!! Deb A

Report post · February 7, 2003

Welcome Becky, I know you are going to love this support group. I'm sorry Seren

has CF but things are getting better all the time. My name is and I have

2 kids, a 20 yr old " man " (lol)w/o CF. and 19 yr old w/CF. She is doing

really well, and is in college and living a normal life. (well pretty normal)

love,

M

Report post · February 7, 2003

Hi ,

Thank you for your reply. There are definitely much worse things that Seren

could have, and we're coping fine so far with everything.

Hugs!

Becky and Seren

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: Re: New Member

>Date: Fri, 7 Feb 2003 16:52:33 -0800

>

>Welcome Becky, I know you are going to love this support group. I'm sorry

>Seren has CF but things are getting better all the time. My name is

>and I have 2 kids, a 20 yr old " man " (lol)w/o CF. and 19 yr old

>w/CF. She is doing really well, and is in college and living a normal life.

>(well pretty normal)

>

>love,

>M

>

Report post · March 10, 2003

Hi ,

I am 13 months out also. I had my surgery on feb 7th. Terrific weight loss!

kim O

Report post · March 10, 2003

Hi ,

I am 13 months out also. I had my surgery on feb 7th. Terrific weight loss!

kim O

Report post · April 13, 2003

Xntriclady,

IMHO, the chances of you getting a virus or Sars from exposure

to your co-workers would be no more likely than getting it in the

grocery store or picking up prescriptions at your local pharmacy.

It would be a shame to give up a job, especially one that you

enjoy, merely due to fear of getting sick. We tend to isolate

ourselves too much already with CP, due to days that we don't

feel well enough to leave the house. If you've got a job that you

enjoy, that provides both social stimulation and financial

rewards, IMHO I think you should enjoy it and stop worrying.

Life is too short to live it within four walls.....unless you have to.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

PAI, Intl.

Note: All comments or advice is personal opinion only, and

should not a substitute for professional medical consultation.

> HELLO FELLOW SUFFERERS!

> I HAVE ROUGHLY SUFFERED FROM CHRONIC

PANCREATITIS FOR 20 YEARS. DON'T REALLY HAVE ANYONE

TO ADVISE ME.....JUST USE MY OWN COMMON SENSE.

HOWEVER, I HAVE RECENTLY GONE BACK TO WORK (I AM A

53 YEAR OLD MARRIED WOMAN). I AM ENJOYING

THE JOB, BUT WONDER IF MY HEALTH WOULD BE BETTER IF

I DIDN'T WORK. MY BIGGEST WORRY IS THAT I MIGHT CATCH

A VIRUS, OR AT WORST, SARS,

OVER THE YEARS I HAVE DELIBERATELY AVOIDED A LOT OF

CONTACT WITH OTHER PEOPLE IN ORDER TO PROTECT MY

HEALTH AND IT HAS STOOD ME IN GOOD STEAD.

I WOULD APPRECIATE ANY INPUT OR ADVICE. IF IT WAS IN MY

BEST INTERESTS TO GIVE UP MY JOB, I WOULD DO IT, BUT I

NEED SOME INPUT AND/OR ADVICE FROM OTHER

SUFFERERS. MANY THANKS FOR LISTENING.

Report post · April 18, 2003

Melinda,

I am truly glad you had the courage to post. It does take a lot

of courage to post about certain issues and this is one of them. And, I

would hope, that no one would flame you for it.

I actually have done my recovery in reverse order from you. The

last drink I had, I don't remember how I got home. I decided that night

that I never wanted to loose that much control again. The road was not

an easy one. However, in hind sight, I realize that it was much easier

to give up the alcohol then to give up the food. I had more of a

relationship with the food.

The things that got me through are a lot of the things that you

have already mentioned. I did find an AA sponser. I had to become

brutally honest about the alcohol. I knew I was out of control, that my

life with alcohol had become unmanagable. Unfortunately I transferred

all of that addiction to food and it took me another 15 years to

acknowledge and accept the fact that my food was also out of control.

Melinda, I know that this is going to sound like an old AA cliche

but in every cliche there is a lot of truth. It literally took me one

day at a time to get over the alcohol and the food. I have to live by

the saying that I can give up that stuff for 24 hours. If I look at

giving it up for life, I don't see any hope. I can, however, see myself

living without it today whether it be alcohol, sugar, carbs, or whatever

else it may be. By all means, keep reaching out, keep posting, keep

talking. The more I told others the more accountable I become.

I would like to share a story with you. I belong to a small

church. Consequently everyone knew that I had the surgery. It is much

like living in a small town I'm sure. We have potlucks once a month and

celebrate birthdays once a month. I always felt people were watching

what I ate pre-surgery. Most of them don't watch anymore. They know

that I will not eat more then a small plate of food. There is now no

fear that I will eat everything in site before they get a chance. It is

really nice to be able to talk with people instead of stuffing my face.

This could be you some day.

Lori Owen - Denton, Texas

congestive heart failure 4/14/01 479 lbs.

Silistic Ring Vertical Gastroplasty 7/16/01 401 lbs.

Current Weight 335 lbs

Dr. Ritter/Dr. Bryce

On Fri, 18 Apr 2003 22:09:40 -0000 " melialex31 "

writes:

> Hi everyone,

>

> My name is Melinda. I had my gastric bypass lap on 3-28-2002. I'm

> a

> slow weight loser....just under 100 lbs. But I know why I'm slow.

> I've one of those that replaced food with alcohol. Wine...my

> alchohol

> of choice. Never had an interest in it before. Please don't flame

> me. I'm in AA and am working on it. I'm just scared. Scared for

> my

> liver. I'm out of control, yet still don't regret having the

> surgery.

> I'm healther in an ironic point of view. I get attention like

> I've

> never had it before even at 276 lbs. My starting weight was 369.

> I

> need some support. I know there are people out there that have

> turned

> to alcohol. I need to hear from those people and hear how they

> have

> coped and overcome. I don't want to drink, but feel right now it

> is

> the only way to cope. I'm in AA, in counseling...seeing a

> psychiatrist..on meds...what more can be done? This is a recent

> awakening for me..but I realize I am maintaining my weight now with

> wine. Lots of calories. I could care less if I eat one bit at

> this

> point, but do try to eat meat and protein whenever I can....I'm

> sure

> it is not enough. Please help!!!

> Melinda

Report post · April 18, 2003