New here

[Guest guest]

<< Her book UNRAVELING THE MYSTERY OF

AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER is very good. Her child had

problems that remind me of your child.

Another good book is SPECIAL DIETS FOR SPECIAL KIDS by , Ph.D. >>

Dear Kim

I agree with Betty. These books will change your life and most important you

son will come back to you!

Oh my gosh, as I read your letter I got such a strong feeling of urgency...I

really believe that once you wean him from milk, you will find amazing

changes. You are fortunate to be discovering this while he's still so young

and there is a good chance that you may be able to reverse much of the damage

done.

It helps to understand that, while he may have some food allergies, the

intolerance to milk and grain proteins is not an allergy, but an inability to

properly digest these substances and the result is partially broken down

proteins that convert to a powerful drug in his bloodstream. This is what

causes him to be so distant, so oversensitive to the environment and so crazy

at times. See if when he's being aggressive giving him milk calms him down.

Maybe the negativity is his way of expressing the need for the drug that is

produced by the milk.

Wow, I sound like a real high-pressure salesman here. Sorry if I got carried

away!

Keep us posted on your decision and your progress!

Cherri

Mom to Ben (2 yrs PDD)

[Guest guest]

<< Her book UNRAVELING THE MYSTERY OF

AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER is very good. Her child had

problems that remind me of your child.

Another good book is SPECIAL DIETS FOR SPECIAL KIDS by , Ph.D. >>

Dear Kim

I agree with Betty. These books will change your life and most important you

son will come back to you!

Oh my gosh, as I read your letter I got such a strong feeling of urgency...I

really believe that once you wean him from milk, you will find amazing

changes. You are fortunate to be discovering this while he's still so young

and there is a good chance that you may be able to reverse much of the damage

done.

It helps to understand that, while he may have some food allergies, the

intolerance to milk and grain proteins is not an allergy, but an inability to

properly digest these substances and the result is partially broken down

proteins that convert to a powerful drug in his bloodstream. This is what

causes him to be so distant, so oversensitive to the environment and so crazy

at times. See if when he's being aggressive giving him milk calms him down.

Maybe the negativity is his way of expressing the need for the drug that is

produced by the milk.

Wow, I sound like a real high-pressure salesman here. Sorry if I got carried

away!

Keep us posted on your decision and your progress!

Cherri

Mom to Ben (2 yrs PDD)

[Guest guest]

<< Her book UNRAVELING THE MYSTERY OF

AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER is very good. Her child had

problems that remind me of your child.

Another good book is SPECIAL DIETS FOR SPECIAL KIDS by , Ph.D. >>

Dear Kim

I agree with Betty. These books will change your life and most important you

son will come back to you!

Oh my gosh, as I read your letter I got such a strong feeling of urgency...I

really believe that once you wean him from milk, you will find amazing

changes. You are fortunate to be discovering this while he's still so young

and there is a good chance that you may be able to reverse much of the damage

done.

It helps to understand that, while he may have some food allergies, the

intolerance to milk and grain proteins is not an allergy, but an inability to

properly digest these substances and the result is partially broken down

proteins that convert to a powerful drug in his bloodstream. This is what

causes him to be so distant, so oversensitive to the environment and so crazy

at times. See if when he's being aggressive giving him milk calms him down.

Maybe the negativity is his way of expressing the need for the drug that is

produced by the milk.

Wow, I sound like a real high-pressure salesman here. Sorry if I got carried

away!

Keep us posted on your decision and your progress!

Cherri

Mom to Ben (2 yrs PDD)

[Guest guest]

Kim, I suppose you know that it is the milk that is probably constipating

your child. If your child will not take a milk substitute now, start adding

one to his regular milk. Sneaking it in a little at a time. Gradually

increase the substitute while degreasing the regular milk. You need to get

him off the milk as soon as possible. While cold turkey would get it out of

his system faster, it might make it harder to get him to accept a different

milk. I would work on getting him to accept more than one type of milk

substitute so that you can alternate them. Blue Diamond Almond drink is

good. Mocha Mix nondairy creamer has a good taste but NO food value. Soy

Dream vanilla is acceptable to Evan and so is DariFree (potato based).

Casein will leave his system more quickly than gluten and I think from what

I have read that you will see a lot from just getting casein out of his

diet. Your son is young and you have the best shot at recovery if you act

NOW. Don't waver like I did when Evan was 5. After you get him off casein

that is all dairy, then you can attack the gluten, one thing at a time so

you can get him into new foods. Ball Park all beef franks are ok. You

might try switching him over to these. There are no substitute for the

spaghetti O's. Chicken nuggets you can do. You need to go through the

recipes at GFCFrecipesegroups (DOT)

Forget what the doctor said. He does not understand yet. Maybe he never

will. Some are close minded about this. You may have to find another

doctor. I did. The new one does not know but she listens and is very open.

You have to work with what you have. You can do the diet without the doctor.

Karyn Seroussi's talk at one of the conferences I have on tape made me

decide that I HAD to try this diet. Her book UNRAVELING THE MYSTERY OF

AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER is very good. Her child had

problems that remind me of your child.

Another good book is SPECIAL DIETS FOR SPECIAL KIDS by , Ph.D.

Betty in Central California

[Guest guest]

Hi Kim:

My son, , was very much like your son, is now. He only ate

foods made from wheat and cheese - all day, every day. I thought he

would starve if I removed the things he liked eating. We finally went

completely GFCF in August of this year and he has not starved; in fact,

he'll tell everyone who offers him that he can only eat " special foods "

(still a little heavy on the starches). He used to be a big milk

drinker, adored muenster cheese, pizza, maccaroni & cheese, grilled

cheese sandwiches, bagels and cream cheese and his behavior was so off

the wall, it was hard to be around him. My husband and I were so

frustrated trying to deal with him until we put him on the diet and he's

a changed child all around. He's still a picky eater and we're still

looking to get him to eat a greater variety of foods, but he's doing so

well and now friends and relatives are telling me that his dx (PDD NOS

mild) must have been wrong because he seems like such a normal child.

My son also got constipated from milk - rarely had diarrhea; and even

now, I see a lot of pediatric doctors who think the diet is wacky, as the

parents must be who want to follow it. However, I am also meeting

doctors who are supportive and as helpful as they can be. also

used to be a wonderful eater until he turned 18 months old (he's 5 now)

and all of a sudden, everything had to pass a texture test and he started

limiting to all wheat and cheese items.

Believe me, the diet is doable and the sooner you start your son on it,

the easier it will be all around. I also have put my 2 year old son on

this same diet because I was seeing behaviors in him that really worried

me. He also is doing very well.

Good luck. This group is the best thing you'll ever find in offering

support and guidance on this road to helping your son recover.

( & Malachi's mom)

[Guest guest]

Hi Kim:

My son, , was very much like your son, is now. He only ate

foods made from wheat and cheese - all day, every day. I thought he

would starve if I removed the things he liked eating. We finally went

completely GFCF in August of this year and he has not starved; in fact,

he'll tell everyone who offers him that he can only eat " special foods "

(still a little heavy on the starches). He used to be a big milk

drinker, adored muenster cheese, pizza, maccaroni & cheese, grilled

cheese sandwiches, bagels and cream cheese and his behavior was so off

the wall, it was hard to be around him. My husband and I were so

frustrated trying to deal with him until we put him on the diet and he's

a changed child all around. He's still a picky eater and we're still

looking to get him to eat a greater variety of foods, but he's doing so

well and now friends and relatives are telling me that his dx (PDD NOS

mild) must have been wrong because he seems like such a normal child.

My son also got constipated from milk - rarely had diarrhea; and even

now, I see a lot of pediatric doctors who think the diet is wacky, as the

parents must be who want to follow it. However, I am also meeting

doctors who are supportive and as helpful as they can be. also

used to be a wonderful eater until he turned 18 months old (he's 5 now)

and all of a sudden, everything had to pass a texture test and he started

limiting to all wheat and cheese items.

Believe me, the diet is doable and the sooner you start your son on it,

the easier it will be all around. I also have put my 2 year old son on

this same diet because I was seeing behaviors in him that really worried

me. He also is doing very well.

Good luck. This group is the best thing you'll ever find in offering

support and guidance on this road to helping your son recover.

( & Malachi's mom)

[Guest guest]

Hi Kim:

My son, , was very much like your son, is now. He only ate

foods made from wheat and cheese - all day, every day. I thought he

would starve if I removed the things he liked eating. We finally went

completely GFCF in August of this year and he has not starved; in fact,

he'll tell everyone who offers him that he can only eat " special foods "

(still a little heavy on the starches). He used to be a big milk

drinker, adored muenster cheese, pizza, maccaroni & cheese, grilled

cheese sandwiches, bagels and cream cheese and his behavior was so off

the wall, it was hard to be around him. My husband and I were so

frustrated trying to deal with him until we put him on the diet and he's

a changed child all around. He's still a picky eater and we're still

looking to get him to eat a greater variety of foods, but he's doing so

well and now friends and relatives are telling me that his dx (PDD NOS

mild) must have been wrong because he seems like such a normal child.

My son also got constipated from milk - rarely had diarrhea; and even

now, I see a lot of pediatric doctors who think the diet is wacky, as the

parents must be who want to follow it. However, I am also meeting

doctors who are supportive and as helpful as they can be. also

used to be a wonderful eater until he turned 18 months old (he's 5 now)

and all of a sudden, everything had to pass a texture test and he started

limiting to all wheat and cheese items.

Believe me, the diet is doable and the sooner you start your son on it,

the easier it will be all around. I also have put my 2 year old son on

this same diet because I was seeing behaviors in him that really worried

me. He also is doing very well.

Good luck. This group is the best thing you'll ever find in offering

support and guidance on this road to helping your son recover.

( & Malachi's mom)

[Guest guest]

> Hi my name is Kim and I am the mother of a 2 1/2 year old little

boy named

> . He was diagnosed with PDD-NOS in September. I am just

starting

> ABA therapy for him. I have seen a few things about food

allergies, but

> like most others I have said he eats so little he will starve if I

don't

> give him the things he eats. Which pretty much consist of casein

or gluten.

> He drinks anywhere from 1/2 gallon to a gallon of milk a day,

eats chicken

> nuggets, spaghetti o's, hot dogs (only Meyer smokies) rice,

and that's

> about it. He is a very large child so I figured he was growing

there was

> nothing wrong with him. I know it is the milk that has made him

grow

> because somedays that's all he has.

> I am going to try this diet on him, but I wanted some opinions

first. I

> thought about it last night and I realized that used to eat

a

> variety of foods when he was under 1 year old. He would eat any

baby food.

> He was only Enfamil Nutramigen then. The week switched to

milk he

> was very sick, I thought it was the flu, now I'm not so sure. He

then went

> ona downward spiral. He didn't talk much when he was under a year

but it

> got worse as he got older. He started losing words and was very

unsocial.

> He started the hand flapping and now he is abusive to our animals,

screams

> to the top of his lungs for no apparent reason. This is always

great when

> we are shopping.

> Anyways, I called his ped. this morning and he said that

probably

> didn't have a milk allergy just because he has PDD. He said he

would have

> diarrhea. Actually, is just the opposite, he gets

constipated a lot

> now. I just figure ped. are always wary of stuff like this. Some

of them

> don't believe that diet could influence a child's actions. PLease

help me

> with this, am I doing the right thing, success stories would be

greatly

> appreciated now.

> Thanks,

> Kim (mom to 2.7 PDD-NOS, Sid)

>

Kim, I agree with everyone. You will be amazed at what you see. My

son only ate a few things. He quit eating healthy things also until

we started the diet in Aug. Now he is back to eating sweet potatos,

bananas and trying new things. He was so addicted to gluten and

casein that all he wanted was junk food. After three days on the diet

(I went cold turkey with no problems)his speech and comprehension

started to greatly improve. It was almost bizzare. Your son sounds

like a perfect candidate for the diet. Also, don't be suprised if it

takes awhile for things like soy or rice milk. It took us a few

months before my son would drink it. Also, cow's milk is so bad for

anyone. I wouldn't give it to an animal. I also wouldn't worry too

much about your doctor. Most of them have no clue about nutrition.

Good luck, I hope you start the diet soon. Vicki

H.____________________________________________________________________

_________________

> Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

You will do an incredible service to your son by putting him on the diet.

You described my son's eating habits to a " T " prior to the diet. He loved

those little smokies! He also drank over 2 quarts of milk per day. If you

are interested in a success story, go to www.gfcfdiet.com and look at many

success stories. My son's is there under . Give the diet at least a 4

month trial.

a - Madison WI

> Hi my name is Kim and I am the mother of a 2 1/2 year old little boy

named

> . He was diagnosed with PDD-NOS in September. I am just starting

> ABA therapy for him. I have seen a few things about food allergies, but

> like most others I have said he eats so little he will starve if I don't

> give him the things he eats. Which pretty much consist of casein or

gluten.

> He drinks anywhere from 1/2 gallon to a gallon of milk a day, eats

chicken

> nuggets, spaghetti o's, hot dogs (only Meyer smokies) rice, and

that's

> about it. He is a very large child so I figured he was growing there was

> nothing wrong with him. I know it is the milk that has made him grow

> because somedays that's all he has.

> I am going to try this diet on him, but I wanted some opinions first. I

> thought about it last night and I realized that used to eat a

> variety of foods when he was under 1 year old. He would eat any baby

food.

> He was only Enfamil Nutramigen then. The week switched to milk he

> was very sick, I thought it was the flu, now I'm not so sure. He then

went

> ona downward spiral. He didn't talk much when he was under a year but it

> got worse as he got older. He started losing words and was very

unsocial.

> He started the hand flapping and now he is abusive to our animals, screams

> to the top of his lungs for no apparent reason. This is always great when

> we are shopping.

> Anyways, I called his ped. this morning and he said that

probably

> didn't have a milk allergy just because he has PDD. He said he would have

> diarrhea. Actually, is just the opposite, he gets constipated a

lot

> now. I just figure ped. are always wary of stuff like this. Some of them

> don't believe that diet could influence a child's actions. PLease help me

> with this, am I doing the right thing, success stories would be greatly

> appreciated now.

> Thanks,

> Kim (mom to 2.7 PDD-NOS, Sid)

[Guest guest]

Carla,

Welcome to our group!

Things will probably improve a great deal with your child's belly

aches once the enzymes are worked out and he's at home. You will

probably spend a lot less time in the hospital than what you're

expecting also.

Try to write down any questions that you have for the cf care team so

that you don't forget to ask them. That's always been very helpful

to me.

Take heart that you're not alone, at least. This isn't the end of

the world, but I know it sure seems like it at first.

Where are you from? We have people from around the world on this

list. We are so fortunate to have such a diverse membership.

I live in Ohio and take my son to Pittsburgh Children's Hosp. cf

clinic for care. He hasn't been hospitalized since he was a newborn

(he was there for a week when diagnosed.) I think that it is very

common to admit a newly diagnosed child to the hospital to resolve

enzyme issues, and also to educate the parents in cf care, including

chest physiotherapy. Don't be too alarmed that your child was put in

the hospital, it doesn't necessasarily mean that the outlook is gloom

and doom. I think it's just standard procedure in most cases.

Good luck and feel free to write anytime!

~

mommy to 3, 1 wcf

[Guest guest]

Carla,

Welcome to our group!

Things will probably improve a great deal with your child's belly

aches once the enzymes are worked out and he's at home. You will

probably spend a lot less time in the hospital than what you're

expecting also.

Try to write down any questions that you have for the cf care team so

that you don't forget to ask them. That's always been very helpful

to me.

Take heart that you're not alone, at least. This isn't the end of

the world, but I know it sure seems like it at first.

Where are you from? We have people from around the world on this

list. We are so fortunate to have such a diverse membership.

I live in Ohio and take my son to Pittsburgh Children's Hosp. cf

clinic for care. He hasn't been hospitalized since he was a newborn

(he was there for a week when diagnosed.) I think that it is very

common to admit a newly diagnosed child to the hospital to resolve

enzyme issues, and also to educate the parents in cf care, including

chest physiotherapy. Don't be too alarmed that your child was put in

the hospital, it doesn't necessasarily mean that the outlook is gloom

and doom. I think it's just standard procedure in most cases.

Good luck and feel free to write anytime!

~

mommy to 3, 1 wcf

[Guest guest]

>>Hi everyone. I just joined. I'm searching for a good support group

for parents of CF children and this looked like the best.<<

Hi Carla,

welcome to the list, I am optimistic that you'll get what you look for here.

Sorry to hear about your son's dx though. Many, including me, have said it took

a year to adjust to the situation. Feel free to ask any question you like.

Looking forward to hear more about you and your family.

Torsten, dad of Fiona 4wcf

[Guest guest]

>>Hi everyone. I just joined. I'm searching for a good support group

for parents of CF children and this looked like the best.<<

Hi Carla,

welcome to the list, I am optimistic that you'll get what you look for here.

Sorry to hear about your son's dx though. Many, including me, have said it took

a year to adjust to the situation. Feel free to ask any question you like.

Looking forward to hear more about you and your family.

Torsten, dad of Fiona 4wcf

[Guest guest]

Carla,

I have to be honest with you.. we found out my son had

CF when he was 3. We spent 3 years in and out of

doctors offices, week after week after week of

different antibiotics, adenoids removed, tubes in the

ears... 3 years of not knowing why he was continually

sick. The family doctor and 2 ENT's could not

pinpoint it or suggest it. So when Jonathon went into

the hospital at 3 with very serious pnuemonia, a

pulmonary doctor told me within 2 minutes of hearing

about his past that he wanted him tested. I thought

... NO WAY. My husband and I are both very healthy

people, no problems whatsoever.. there's no way this

kid was gonna have a disease. But ya know.. when the

doctor told us that he DID have it.. we were actually

more relieved that devistated. It was the kind of

emotion like " Thank God, I KNEW something was wrong

with this kid " . The real heartache for me came when I

found out my 2 month old daughter also had it. That

had more of a downside to it, cuz we had yet to go

thru all that with her.. and she was just a tiny

little baby. The enzymes are tough when they are that

little, but atleast it gets easier. Now the aerosals

and P & D... now that's a little bit tougher. My

daughter is now 1 1/2 and still doesn't cooperate.

Once your routine kicks in, it will begin to feel like

normal life. You will never forget the fact that your

child is sick, and you will go through many trials.

Just remember to make each day special in some way,

even if it is just a kiss goodnight. Good luck!

Mom of Jonathon 4 w/cf

Marissa 1 1/2 w/cf

a 7 months w/o cf

--- Carla wrote:

> Hi everyone. I just joined. I'm searching for a

> good support group

> for parents of CF children and this looked like the

> best.

> My 8 week old son was diagnosed with CF last

> Monday..a total shock to

> us, as we thought he had a whole different problem.

> We spent most of

> the week in the hospital with him getting his

> enzymes worked out.

> He's still not feeling well..has really fussy times

> and tummy aches.

> We're still having problems adjusting to all this.

> I just don't know

> how I'll ever get over the heartache. How have the

> rest of you dealt

> with the initial adjustment?

> He takes enzymes with fruit 4 times a day, another

> med to flush his

> liver twice a day, plus vitamins. He hates taking

> any of it, so it's

> always a real fight.

> We also have a 2 1/2 year old son who isn't dealing

> with the changes

> and our absence very well. We didn't know they

> would be admiting the

> baby, so our older one kind of got shunted around

> all week, and

> really missed us. He's going to have to get used to

> it, because I

> know it won't be the last time we have to leave him.

> OUr Children's

> Hospital and CF team is over 100 miles away, so

> coming home to see

> him isn't possible.

> Anyways, that's my story. I hope to get really

> involed around here,

> because I've found the best support to be from those

> who've

> experienced it. Others mean well, but just don't

> understand.

> Sad but hopefull,

> Carla

>

>

>

__________________________________________________

[Guest guest]

Hi Carla, welcome home. Hang in there. Giving the meds gets easier as they

get used to them. We used to have to hold Patti down and now she can almost

push her own oral meds and she is only 6 months. :-) I think your other

little one will adjust also. Ours did, they are 5, 4, and 2. Just give

him a job to do that relates to the baby's care. My 5 year old can hold

Patti's albuterol treatment, my 4 year old counts out the enzymes and my two

year old turns on the nebulizer and thows away the empty enzyme capsules.

It has helped them feel big and needed while at the same time giving me a

little help. Some one has said on here before that it is the family that

has cf, not just the person diagnosed and I would deffinately agree with

that. After the grief you will learn to adjust and it will become another

one of those grand adventures that life has to offer.

Love and prayers,

Dawn Meeks

New here

> Hi everyone. I just joined. I'm searching for a good support group

> for parents of CF children and this looked like the best.

> My 8 week old son was diagnosed with CF last Monday..a total shock to

> us, as we thought he had a whole different problem. We spent most of

> the week in the hospital with him getting his enzymes worked out.

> He's still not feeling well..has really fussy times and tummy aches.

> We're still having problems adjusting to all this. I just don't know

> how I'll ever get over the heartache. How have the rest of you dealt

> with the initial adjustment?

> He takes enzymes with fruit 4 times a day, another med to flush his

> liver twice a day, plus vitamins. He hates taking any of it, so it's

> always a real fight.

> We also have a 2 1/2 year old son who isn't dealing with the changes

> and our absence very well. We didn't know they would be admiting the

> baby, so our older one kind of got shunted around all week, and

> really missed us. He's going to have to get used to it, because I

> know it won't be the last time we have to leave him. OUr Children's

> Hospital and CF team is over 100 miles away, so coming home to see

> him isn't possible.

> Anyways, that's my story. I hope to get really involed around here,

> because I've found the best support to be from those who've

> experienced it. Others mean well, but just don't understand.

> Sad but hopefull,

> Carla

>

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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.

>

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

>

>

>

[Guest guest]

Dear Carla,

Welcome to the group! I have a five month old wcf, Connor, and a 2 1/2 Jayden

wocf. I know exactly what you are going through. Connor was dx at four and 1/2

weeks and it was a total shock. He hadn't been putting on weight but he seemed

otherwise perfect. It was very hard to come to grips with the fact that he had

cf even though he looked normal. And it still is. Thank goodness he is healthy

and so it's hard having to do his cpt and give him lots of medicines when he's

not sick. It wont take long for your baby to start liking the medicines. Connor

loves his antibiotics now even though they taste awful for me. And it's very

easy to give him panadol or other medicines if he needs them. Jayden gags and

screams so that's one good thing with Connor!

We live five minutes from our clinic which is really handy. But we dont have any

close family around and so I'm dreading what we'll do if Connor ever has to be

admitted. Jayden has been pretty good with not getting as much attention but

then Connor hasn't been in hospital so I haven't had to leave him.

Well hang in there as it does get easier to deal with. Of course I still get sad

when I think what Connor has ahead to face but I'm also grateful that it's cf

he's got and not a more debilitating illness/disability. He's such a wonderful

baby and I'm going to make sure he has the best life he can regardless of his

cf.

Hope your baby is doing well.

Kristy

[Guest guest]

Carla,

I have a 15 yr old son who is doing extremely well (with CF) . He has never

had a lung problem - only gastro.

I feel really confident that your son will not have to contend with cf for

more than a few years. Look forward to his future. The best is yet to

come!

In the meantime, please e-mail me if you have any questions. Danny was 2

days old when diagnosed.

Just make sure they give him enzymes EVERY time he eats. They were giving

Danny enzymes in a bottle when he was first diagnosed, and of course, none

of them got through the nipple, and of course we didn't know any better. He

ended up nursing for 17 mths, by the way!

Take care of yourself! (Yes, Danny has a sister four years older who was

quite neglected for the first few months. (Where do you live? We go to

Children's Hosp. of Phila.

Lynn Barnett (Lynbar @prodigy.net)

New here

>Hi everyone. I just joined. I'm searching for a good support group

>for parents of CF children and this looked like the best.

>My 8 week old son was diagnosed with CF last Monday..a total shock to

>us, as we thought he had a whole different problem. We spent most of

>the week in the hospital with him getting his enzymes worked out.

>He's still not feeling well..has really fussy times and tummy aches.

>We're still having problems adjusting to all this. I just don't know

>how I'll ever get over the heartache. How have the rest of you dealt

>with the initial adjustment?

>He takes enzymes with fruit 4 times a day, another med to flush his

>liver twice a day, plus vitamins. He hates taking any of it, so it's

>always a real fight.

>We also have a 2 1/2 year old son who isn't dealing with the changes

>and our absence very well. We didn't know they would be admiting the

>baby, so our older one kind of got shunted around all week, and

>really missed us. He's going to have to get used to it, because I

>know it won't be the last time we have to leave him. OUr Children's

>Hospital and CF team is over 100 miles away, so coming home to see

>him isn't possible.

>Anyways, that's my story. I hope to get really involed around here,

>because I've found the best support to be from those who've

>experienced it. Others mean well, but just don't understand.

>Sad but hopefull,

>Carla

>

>

>

>

>PLEASE do not post religious emails to the list.

>

>

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

>

>

>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.

>

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

>

>

>

[Guest guest]

Hi, Carla. My daughter was diagnosed at 3 weeks, so I know exactly what you

are going through. . When I found out about Elyse I did three things- I

cried, I gathered all the information I could get my hands on and lastly I

began the fight. Allow yourself time to adjust. I am very optimistic

about Elyse's future. Elyse's doctor told me something that has really

stuck with me " You have a normal child with a condition. " I couldn't see

it at the time, but it is clear to me now. Elyse is just like every other 4

month old. Sometimes we get so focused on what is wrong, we forget to be

thankful for the thousands of things that are right.

Here if you need me,

Colleen, mom to Elyse 4 months w/cf

New here

Hi everyone. I just joined. I'm searching for a good support group

for parents of CF children and this looked like the best.

My 8 week old son was diagnosed with CF last Monday..a total shock to

us, as we thought he had a whole different problem. We spent most of

the week in the hospital with him getting his enzymes worked out.

He's still not feeling well..has really fussy times and tummy aches.

We're still having problems adjusting to all this. I just don't know

how I'll ever get over the heartache. How have the rest of you dealt

with the initial adjustment?

He takes enzymes with fruit 4 times a day, another med to flush his

liver twice a day, plus vitamins. He hates taking any of it, so it's

always a real fight.

We also have a 2 1/2 year old son who isn't dealing with the changes

and our absence very well. We didn't know they would be admiting the

baby, so our older one kind of got shunted around all week, and

really missed us. He's going to have to get used to it, because I

know it won't be the last time we have to leave him. OUr Children's

Hospital and CF team is over 100 miles away, so coming home to see

him isn't possible.

Anyways, that's my story. I hope to get really involed around here,

because I've found the best support to be from those who've

experienced it. Others mean well, but just don't understand.

Sad but hopefull,

Carla

[Guest guest]

Hi Carla

I know what you are going through. My daughter is 11 mo wcf and she was

diagnosed at 8 weeks of age also. It is very hard, but we are all here to

help you through it. Just hang in there and take it day by day. The future

looks bright for CFers. If you ever want to chat you can e-mail me privately

at Esbrown8@....

Take care.

Blessings

Mother of 11 mo wcf

[Guest guest]

Hi Carla

I know what you are going through. My daughter is 11 mo wcf and she was

diagnosed at 8 weeks of age also. It is very hard, but we are all here to

help you through it. Just hang in there and take it day by day. The future

looks bright for CFers. If you ever want to chat you can e-mail me privately

at Esbrown8@....

Take care.

Blessings

Mother of 11 mo wcf

[Guest guest]

Hi Carla

I know what you are going through. My daughter is 11 mo wcf and she was

diagnosed at 8 weeks of age also. It is very hard, but we are all here to

help you through it. Just hang in there and take it day by day. The future

looks bright for CFers. If you ever want to chat you can e-mail me privately

at Esbrown8@....

Take care.

Blessings

Mother of 11 mo wcf

[Guest guest]

Hi Carla. Welcome to the group. Where do you guys live?

>

>Reply-To: cfparents

>To: cfparents

>Subject: New here

>Date: Sun, 13 May 2001 15:05:00 -0000

>

>Hi everyone. I just joined. I'm searching for a good support group

>for parents of CF children and this looked like the best.

>My 8 week old son was diagnosed with CF last Monday..a total shock to

>us, as we thought he had a whole different problem. We spent most of

>the week in the hospital with him getting his enzymes worked out.

>He's still not feeling well..has really fussy times and tummy aches.

>We're still having problems adjusting to all this. I just don't know

>how I'll ever get over the heartache. How have the rest of you dealt

>with the initial adjustment?

>He takes enzymes with fruit 4 times a day, another med to flush his

>liver twice a day, plus vitamins. He hates taking any of it, so it's

>always a real fight.

>We also have a 2 1/2 year old son who isn't dealing with the changes

>and our absence very well. We didn't know they would be admiting the

>baby, so our older one kind of got shunted around all week, and

>really missed us. He's going to have to get used to it, because I

>know it won't be the last time we have to leave him. OUr Children's

>Hospital and CF team is over 100 miles away, so coming home to see

>him isn't possible.

>Anyways, that's my story. I hope to get really involed around here,

>because I've found the best support to be from those who've

>experienced it. Others mean well, but just don't understand.

>Sad but hopefull,

>Carla

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Carla: welcome to the group. We found out at two weeks our son had

cf. he is now a one year old " wildman " . We still haven't gotten over the

initial " shock " . We both still break down and cry sometimes. Some days are

better than others but I don't think anything could be as bad as those first

few days. Mostly we felt lost and our world was going to end.

This group gives out a lot of good advice, stay tuned and good luck.

Doug Stanley dad of w/CF and a one year old dynamo pulling the cats

tail at every turn.

[Guest guest]

Carla: welcome to the group. We found out at two weeks our son had

cf. he is now a one year old " wildman " . We still haven't gotten over the

initial " shock " . We both still break down and cry sometimes. Some days are

better than others but I don't think anything could be as bad as those first

few days. Mostly we felt lost and our world was going to end.

This group gives out a lot of good advice, stay tuned and good luck.

Doug Stanley dad of w/CF and a one year old dynamo pulling the cats

tail at every turn.

[Guest guest]

Carla: welcome to the group. We found out at two weeks our son had

cf. he is now a one year old " wildman " . We still haven't gotten over the

initial " shock " . We both still break down and cry sometimes. Some days are

better than others but I don't think anything could be as bad as those first

few days. Mostly we felt lost and our world was going to end.

This group gives out a lot of good advice, stay tuned and good luck.

Doug Stanley dad of w/CF and a one year old dynamo pulling the cats

tail at every turn.