Re: Enzymes, ph....

September 22, 2000

That's great Jen! I tried that with my kids a while ago, but it didn't

work. :-( Anyone have any tips on getting kids to 'want' to swallow them

whole? Abriana is 4, and has swallowed a couple, but doesn't 'want' to do

it this way. I've thought and thought about how I could get her to think

this is cool, but to no avail.

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September 22, 2000

,

My sister had the same problem with , she just didn't want to do it.

So, she always acted soooo very amazed when and Mallory did it (with

watching, of course) in a very exaggerated way..... anyway,

eventually, it was easy, convinced her it was better so of course, she

did it this way to impress her cousin.

How about having a favorite uncle or aunt, or granny, talk alot, in a very

exaggerated way about how they just can't wait to see her swallow them whole,

blah blah blah, and then let them teach her (takes out the control fight if

favorite other adult does it, lol)

Or, you could always do what we did with .....forget to take the dang

applesauce with you when you go out, and so, oops, gotta swallow this if you

wanna eat that yummy pizza......

(completely unplanned, but it worked!!!!)

I figure that its actually easier to teach them when they are younger, which

is why I tried that tonite with ph.......older, they would prob not like

a capsule in their yogurt, and the older they get, the more stubborn they

are, too. I do think it gets harder as they get older to get them to change

their ways, they like consistency, soooooo much......

but, it might be worth trying with the kids in the 11-15 month old age (the

yogurt thing) and then once they can drink from a real cup, not a sippy cup,

they are ready to just swallow capsules (Mall was about 16 months, I think)

but ph seems more delayed in all his motor skills than Mall was. (plus,

I figured, hey, the macoroni and cheese comes out whole in his diaper.....so

if he is swallowing some of them whole, why not try enzymes, lol!)

Anyway, good luck! Know any other kids with CF who can model enzyme

swallowing?

Jen

September 23, 2000

When my son was small, I found an easy way to get him to swallow pills was

to wrap them in a small bit of fruit roll up. This can bit a bit time

consuming at first, wrapping them, but if it works it's well worth it.

After getting used to swallowing them, he then graduated to taking them

without the fruit roll up.

Now if only I could get him to remember to take his pills with him when he

goes out I will be happy. I guess he will learn one day, he's only 22 now.

lol (it never ends)

Sandy

September 23, 2000

When my son was small, I found an easy way to get him to swallow pills was

to wrap them in a small bit of fruit roll up. This can bit a bit time

consuming at first, wrapping them, but if it works it's well worth it.

After getting used to swallowing them, he then graduated to taking them

without the fruit roll up.

Now if only I could get him to remember to take his pills with him when he

goes out I will be happy. I guess he will learn one day, he's only 22 now.

lol (it never ends)

Sandy

September 23, 2000

Hi -

I don't know if this will work for you but when our was about

4, I was getting pretty tired of dragging applesauce etc, with us everywhere

we went. For some reason I thought of using his natural stubborness to my

advantage and I told him an outright lie. I told him that his doctor, Dr.

Dorkin thought that maybe when he was about 6 0r 7 he might be big enough to

swallow his enzymes on his own, but that right now, he was probably too

little. That was all he needed to hear- that very day he started swallowing

them with a drink and he now takes all 6 at one time. I feel like a free

woman! He can eat out anywhere, any time with no problem. I didn't

particularly like lying to him but at least, for this once, his stubborness

worked to my advantage!

Hope things work out for you,

Debi

>

>Reply-To: cfparentsegroups

>To: cfparentsegroups

>Subject: Re: Enzymes, ph....

>Date: Fri, 22 Sep 2000 23:43:04 PDT

>

>That's great Jen! I tried that with my kids a while ago, but it didn't

>work. :-( Anyone have any tips on getting kids to 'want' to swallow them

>whole? Abriana is 4, and has swallowed a couple, but doesn't 'want' to do

>it this way. I've thought and thought about how I could get her to think

>this is cool, but to no avail.

>

>_________________________________________________________________________

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>

>Share information about yourself, create your own public profile at

>http://profiles.msn.com.

>

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September 24, 2000

Hi

I have a 22 year old son with cf and diabetes. Is there anyone on this list

that has an older cf son? I am in need of some advice asap.

Sandy

September 24, 2000

Hi Sandy

This is Helen, mum of aged 27 wcf. Can I help?

>

> Hi

>

> I have a 22 year old son with cf and diabetes. Is there anyone on

this list

> that has an older cf son? I am in need of some advice asap.

>

> Sandy

>

> ***********************

> This is a secular list.

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>

> 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.

>

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

>

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September 24, 2000

Helen

the list is set up so that all replies go to the list....if you don't want a

post to go to the list, just either 1. use the copy/paste feature to get

their addy off the mail (it will say at the top who sent it) or 2. hit reply

all, and usually, cfparents comes up as one writer and the author comes up as

the other, then you can just delete cfparents

hope this helps

Jen

September 24, 2000

Hi Sandy

I know EXACTLY what you are going through. I remember giving

me vague answers when I asked questions like those. I am lucky in

that doesn't have diabetes (yet) so the effects were not as

immediate if he " forgot " his medication except that he spent a large

part of the next day going to the toilet.

You must have been terrified. How did he seem when he got home?

No doubt he deliberately left his meds at home. Even if he has told

this girl about CF I bet he hasn't told her all that goes with it. It

is a lot to explain to a girl you want to impress. I can remember

trying different things with different girls. Sometimes he

would come right out and tell them about CF and other times he would

turn himself inside out trying to keep it from them.

I remember him telling one lovely young girl all about CF and she went

off to the local library and read everything she could find about it

(all totally outdated of course). She very tearfully broke up with

him because she didn't think she could handle it. No wonder they try

to keep it a secret.

I don't know what it is that makes it almost impossible for a young

man to phone home and say he'll be out all night. I guess it doesn't

sound too cool in the heat of passion to suddenly say " Just a minute,

I better let my mother know I won't be home tonight " . I found it

easier to just not expect him to come home and then it was a nice

surprise when he did. Sometimes he was with a girl and other times he

just stayed at a mates house because he had been drinking a little too

much and couldn't drive.

I can't truly say that at 27 is totally responsible. I have

heard his wife asking him if he has his enzymes with him as they go

out and he sure doesn't exercise as much as he should.

It has taken me a long time to realise that although we parents of CF

kids do everything in our power to keep them strong and healthy,

setting them all the right examples in the hope that they will take

good care of themselves, at some stage we have to hand the whole thing

over to them. We have to watch them make their own mistakes and

hopefully learn from them without causing themselves any real harm.

After all those years of responsibility we are left to just watch

helplessly. I have found this much harder than the years where I was

in control of medication, physiotherapy, nutrition etc.

I haven't always handled this very well. In fact sometimes I have

handled it very badly but I am glad to say that and I are still

on very good terms even if he does cringe every time I show him

something I have just found on the internet or quote an email from one

of the lists that I think " might just interest him " .

Sorry if this sounds muddled but I just wrote it as I thought it. If

I can help at anytime Sandy feel free to email me privately or on the

list.

Helen

Hi Helen

>

> Need some advice, hoping you've been there, done that etc.

>

September 24, 2000

Hi Helen

Need some advice, hoping you've been there, done that etc.

My 22 year old son, has recently met a new girlfriend. Yesterday, before he

went out, I told him to make sure he took his insulin and pills with him as

he was not sure if he would be home until later. This morning when I got up

there was no sign of him.

I was so upset, as when I went into his room I found that he had not

bothered to take his meds with him. Have been pacing all morning long,

worried, as he has never done anything like this before without first

letting me know. I know he is old enough to stay out, but a phone call

would have been nice, what upset me more than anything is the fact of not

taking his meds with him. I did ask him just the other day if he told this

new girlfriend about his cf and diabetes and he assured me he had, which I

had no reason to disbelieve him. But after seeing them still sitting there

this morning, I am beginning to wonder if he has.

I completely understand his hesitation at telling her and I could even turn

a blind eye with his cotazym, but the insulin is what's bothering me more

than anything right now. He was diagnosed with diabetes just this past year

and I really don't think he takes it that seriously.

As it turns out, he came home not to long ago and said that he had tried to

call last night and he had just plain forgotten to take his meds with him.

When do they grow up and take a little more responsibility for their health?

Sorry this is so long, if I had written this before he came home I would

have gone on longer but have now had time to calm down a little.

Strange thing is Helen, I thought that it would be you to answer me.

Thanks for the shoulder

Sandy

September 24, 2000

Sandy, I am glad you are feeling better. Now you can relax until the

next time :-). Were you able to have a talk with Matt about the

consequences of not taking his diabetes meds with him? Maybe it is

better to leave it for a few days so he won't think you are over

reacting to last night.

Sometimes its a bit like walking a tightrope when it comes to handling

our adolescent and adult kids don't you think?

I think the list must be set so that all replies go to the list.

Perhaps could explain this as I'm not too sure how these

things work.

Helen

> I did think, Helen, by answering this " Reply to Author " it would not

have

> gone to the list, but directly to you.

>

> Thankyou once again, I feel a lot better this afternoon than I did

first

> thing this morning.

September 24, 2000

Hi Helen

Thankyou so much for replying so soon, it sure is good to know that your not

alone with these problems. What a great site this is.

Well Matt finally strolled in around 1:00 this afternoon, not thinking that

he had done anything wrong, of course. He did say that he tried calling a

couple of times last night but for some reason couldn't get through. I

can't say he didn't because usually he does let me know if he's going to be

extra late, he knows I am a worry wart. I told him though, a simple

solution would have been just to call the operator and he could have gotten

through that way. " Oh yeah, I guess I could have " was his reply. As to his

answer about not taking his meds with him, famous words " I FORGOT "

I did ask again, if he mentioned to this girl about him having cf and

diabetes,he assures me he has, but I think you are right about not telling

her what all goes with it. Don't get me wrong I'm not telling him that he

should tell her, it's entirely up to him when and how he tells someone.

Personally I think that it's easier to be honest and up front from the

beginning, but I'm not in his shoes and he has to handle it the best way he

feels.

Like you said, it is so hard to sit back and watch them make these mistakes,

but we have no control over it any more. I think the best I can do is keep

my fingers crossed and just hope that any mistakes he may make does him no

harm.

I did think, Helen, by answering this " Reply to Author " it would not have

gone to the list, but directly to you.

Thankyou once again, I feel a lot better this afternoon than I did first

thing this morning.

Sandy

September 24, 2000

Thanks Jen

Helen

> Helen

> the list is set up so that all replies go to the list....if you

don't want a

> post to go to the list, just either 1. use the copy/paste feature to

get

> their addy off the mail (it will say at the top who sent it) or 2.

hit reply

> all, and usually, cfparents comes up as one writer and the author

comes up as

> the other, then you can just delete cfparents

> hope this helps

> Jen

October 8, 2000

>Any family or friends of CFers reading this that do not, cannot or will

>never understand, in plain english ..... " STAY AWAY FROM US IF YOUR SICK,

>KEEP YOUR GERMS IN YOUR OWN HOUSEHOLD "

Sandy,

You are funny, but this is exactly true. I am thinking of printing up a

nice little sign, having it laminated and hanging it on our door. It would

say something like, " We always look forward to sharing our home with friends

and family, but please do not come in if you are sick, or even have a cold

or runny nose. These little viruses can have serious affects on our two

sweet kids, Abriana and Bradyn. " I will probably come up with something

better, but you get the idea. Anyone have any ideas what it should say?

Something simple, but to the point.

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October 8, 2000

Sandy, Thanks for writing about how to say things about germs to friends and

family. It would drive me crazy if someone DARED to come to my house with a

cold. People just don't seem to understand. My friends seem to be pretty

good though because I have tried to educate them. A friend of mine asked me

to watch her kids this week and I said your line, well, as long as they

aren't sick. And she said, no they're fine. She called me the next morning

right before she was suppose to bring them over and said one had a runny

nose so she wasn't bringing them. I thought that was so nice because most

people wouldn't even consider changing their plans for a " simple " runny

nose.

I think that keeping Mycah away from sick people is one of the things that

have really helped her. I know lots of people on this list try and let

their kids lead normal lives and I feel like we do too. No, we don't go to

Wal-Mart in the winter, or to Chuck-E-Cheese, or day care, but I don't think

Mycah really misses those things. (of course, she doesn't know about

Chuckie's!) But I have to admit that we do change the way we live in

cold/flu season.

Lori, Mom to Mycah age 3 wcf, age 6 ncf, and age 20, ncf

Re: Enzymes, ph....

>

> What is it with certain people, even family, who are so damned ignorant of

> cf, even though you've tried your darndest to explain things to them.

They

> still seem to look at our kids as having nothing more than a cold or a few

> sinus infections. Even though my son is a lot older than most of the

> children on this list (22), I'm sure a lot of you have been through this

> problem also.

>

> Example: " We'd love to come for dinner, what time? " Then they turn up at

> the door, sniffing and coughing....... " Oh it's only a cold, I feel fine "

> I don't give a shit (that's saying it mildly " ) how they feel, it just

pisses

> me off no end when they just give absolutely no thought of the germs they

> are spreading around in my home.

>

> After all these years I have finally found the solution, (you'd have

thought

> I would have known by now). In future it's going to be " as long as you

are

> all feeling well and have no colds etc., because of course you know how

sick

> Matt gets when he catches a cold, how would you like to come for dinner on

> Sunday "

>

> Fortunately Matt has done well over the years and doesn't get sick to

often,

> But of course the older he gets the more I worry. I'm sure this is why

the

> ignorance of certain people...... " He looks so well, you wouldn't think

there

> was anything wrong with him, maybe he'll outgrow it " How many times have

we

> all heard this stupid line.

>

> Any family or friends of CFers reading this that do not, cannot or will

> never understand, in plain english ..... " STAY AWAY FROM US IF YOUR SICK,

> KEEP YOUR GERMS IN YOUR OWN HOUSEHOLD "

>

> Well I feel a little better now for venting here on this list, hope I get

> the message across to a few people.

>

> Sandy

>

> ***********************

> This is a secular list.

> ***********************

>

> 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.

>

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

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

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>

October 8, 2000

What is it with certain people, even family, who are so damned ignorant of

cf, even though you've tried your darndest to explain things to them. They

still seem to look at our kids as having nothing more than a cold or a few

sinus infections. Even though my son is a lot older than most of the

children on this list (22), I'm sure a lot of you have been through this

problem also.

Example: " We'd love to come for dinner, what time? " Then they turn up at

the door, sniffing and coughing....... " Oh it's only a cold, I feel fine "

I don't give a shit (that's saying it mildly " ) how they feel, it just pisses

me off no end when they just give absolutely no thought of the germs they

are spreading around in my home.

After all these years I have finally found the solution, (you'd have thought

I would have known by now). In future it's going to be " as long as you are

all feeling well and have no colds etc., because of course you know how sick

Matt gets when he catches a cold, how would you like to come for dinner on

Sunday "

Fortunately Matt has done well over the years and doesn't get sick to often,

But of course the older he gets the more I worry. I'm sure this is why the

ignorance of certain people...... " He looks so well, you wouldn't think there

was anything wrong with him, maybe he'll outgrow it " How many times have we

all heard this stupid line.

Any family or friends of CFers reading this that do not, cannot or will

never understand, in plain english ..... " STAY AWAY FROM US IF YOUR SICK,

KEEP YOUR GERMS IN YOUR OWN HOUSEHOLD "

Well I feel a little better now for venting here on this list, hope I get

the message across to a few people.

Sandy

October 8, 2000

What is it with certain people, even family, who are so damned ignorant of

cf, even though you've tried your darndest to explain things to them. They

still seem to look at our kids as having nothing more than a cold or a few

sinus infections. Even though my son is a lot older than most of the

children on this list (22), I'm sure a lot of you have been through this

problem also.

Example: " We'd love to come for dinner, what time? " Then they turn up at

the door, sniffing and coughing....... " Oh it's only a cold, I feel fine "

I don't give a shit (that's saying it mildly " ) how they feel, it just pisses

me off no end when they just give absolutely no thought of the germs they

are spreading around in my home.

After all these years I have finally found the solution, (you'd have thought

I would have known by now). In future it's going to be " as long as you are

all feeling well and have no colds etc., because of course you know how sick

Matt gets when he catches a cold, how would you like to come for dinner on

Sunday "

Fortunately Matt has done well over the years and doesn't get sick to often,

But of course the older he gets the more I worry. I'm sure this is why the

ignorance of certain people...... " He looks so well, you wouldn't think there

was anything wrong with him, maybe he'll outgrow it " How many times have we

all heard this stupid line.

Any family or friends of CFers reading this that do not, cannot or will

never understand, in plain english ..... " STAY AWAY FROM US IF YOUR SICK,

KEEP YOUR GERMS IN YOUR OWN HOUSEHOLD "

Well I feel a little better now for venting here on this list, hope I get

the message across to a few people.

Sandy

October 9, 2000

sandy , i know what you mean. sometimes i want to rip my hair out. patty

October 9, 2000

Sandy,

I have a 3 year olf wcf. When we invite people over, we actually ring them

the morning of the day they are coming to check if they are well. Our

friends & family are very good with that. We actually didnt see my sister

and brother-in-law for 6 months as their little girl had broncilitis

forever, they understood and stayed away. We did loose a family as friends

because I had the nerve to ring them and ask if their son had gotten over

his flu before he came to a birthday party. She screamed & carried on that

how dare I say her children have germs. Needless to say they have never

spoke to us again in 2 years. To bad I dont care. Sure weeds out your true

freinds.

from Adelaide

Re: Enzymes, ph....

>

> What is it with certain people, even family, who are so damned ignorant of

> cf, even though you've tried your darndest to explain things to them.

They

> still seem to look at our kids as having nothing more than a cold or a few

> sinus infections. Even though my son is a lot older than most of the

> children on this list (22), I'm sure a lot of you have been through this

> problem also.

>

> Example: " We'd love to come for dinner, what time? " Then they turn up at

> the door, sniffing and coughing....... " Oh it's only a cold, I feel fine "

> I don't give a shit (that's saying it mildly " ) how they feel, it just

pisses

> me off no end when they just give absolutely no thought of the germs they

> are spreading around in my home.

>

> After all these years I have finally found the solution, (you'd have

thought

> I would have known by now). In future it's going to be " as long as you

are

> all feeling well and have no colds etc., because of course you know how

sick

> Matt gets when he catches a cold, how would you like to come for dinner on

> Sunday "

>

> Fortunately Matt has done well over the years and doesn't get sick to

often,

> But of course the older he gets the more I worry. I'm sure this is why

the

> ignorance of certain people...... " He looks so well, you wouldn't think

there

> was anything wrong with him, maybe he'll outgrow it " How many times have

we

> all heard this stupid line.

>

> Any family or friends of CFers reading this that do not, cannot or will

> never understand, in plain english ..... " STAY AWAY FROM US IF YOUR SICK,

> KEEP YOUR GERMS IN YOUR OWN HOUSEHOLD "

>

> Well I feel a little better now for venting here on this list, hope I get

> the message across to a few people.

>

> Sandy

>

> ***********************

> This is a secular list.

> ***********************

>

> 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.

>

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

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

October 9, 2000

You were soooooo right about that!!! That wasnt a real friend anyway.

That was an aquaintance........You'll have them the rest of your life.BUT

FRIENDS.........forever.....YOUR families health come FIRST!!

Your a great mum!!!!

LOVE & HUGS, grandmom BEV