Re: enzymes and dining out

[Guest guest]

We don't get too many strange looks. Maybe it's the matter-of-fact way I go

through my routine at the restaurant... open bag... pull out Pediasure &

straw... pull out 's enzymes... pull out 's enzymes... set it all

on the table and wait for the food. Of course, it could be that if

sees anyone watching with any interest at all, she wants to go over to their

table (or grab the waitress, or the bus boy, or ANYONE showing (or not) the

slightest amount of interest) and show them how she can take a whole pill....

:-)

I actually like it when people ask questions, because I want to educate

people about CF and spread awareness. If the looks become too lingering or

accusing, I manage to find 'something' to say in a louder than normal voice

so they get the picture, but didn't have to actually come talk to us.

We did have an older couple come up to us once after we were done eating and

ask if our children had CF - I was shocked... it turned out their 32 year old

daughter has CF and they thought they recognized the pill bottles!

Angi

Mom of 3, 2wcf

[Guest guest]

We don't get too many strange looks. Maybe it's the matter-of-fact way I go

through my routine at the restaurant... open bag... pull out Pediasure &

straw... pull out 's enzymes... pull out 's enzymes... set it all

on the table and wait for the food. Of course, it could be that if

sees anyone watching with any interest at all, she wants to go over to their

table (or grab the waitress, or the bus boy, or ANYONE showing (or not) the

slightest amount of interest) and show them how she can take a whole pill....

:-)

I actually like it when people ask questions, because I want to educate

people about CF and spread awareness. If the looks become too lingering or

accusing, I manage to find 'something' to say in a louder than normal voice

so they get the picture, but didn't have to actually come talk to us.

We did have an older couple come up to us once after we were done eating and

ask if our children had CF - I was shocked... it turned out their 32 year old

daughter has CF and they thought they recognized the pill bottles!

Angi

Mom of 3, 2wcf

[Guest guest]

I have gotten some very strange looks. It would not bother me nearly as bad

if someone just came up and asked why my daughter was taking this strange

looking capsule, but instead I often get looks like I am poisoning her food

or something. I especially get dirty looks when I have to really work to

get to open her mouth to take the enzymes. She clamps her mouth shut

at the first few bites of anything because she knows the enzymes are hidden

in there. That is another story though.

S. - mom to andra (nocf), (wcf) and Charlie (nocf) - the

three energy vampires

[Guest guest]

I think this is a great opportunity to teach people about CF. It would be

no different than if she were taking insulin as a diabetic would. Once

people realize why you will get less looks and your child will have many

people encouraging her/him.

Daelynn

[Guest guest]

How about the strange looks for salting your cf kids food out in public?

People look at me like I'm crazy!!!!!

Ronda

[Guest guest]

We had a great way to dispense 's enzymes in public. Sometimes we get

our premixed albuteral in tiny little bottles with screw on lids. We save a

few and clean them out and let them completely dry out. Then we would empty

3 enzyme capsules into the bottle. It worked perfectly!! When it was time

for Jess to take her enzymes we would just take off the cap and she could

empty them into her mouth. Now she swallows the capsules whole which is even

better!

Ronda

[Guest guest]

Diane,

ALL THE TIME!

Mandy

[Guest guest]

I have never given it a second thought. I think it is one of those attitude

things, if you act confident and natural people won't pay as much

attention - or you won't notice if they do and that's basically the same

thing as far as your/your child's enjoyment of the meal.

Lori

mom to Scout 21 mo wCF

enzymes and dining out

> Hello Everyone,

> Does anyone else ever get stared at while giving enzymes when you are

> eating out? Do any of you notice people watching you open capsules and

beg

> your child to eat it?

>

> Diane

>

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[Guest guest]

I must be blessed! takes all of her meds very well. Even when she

first began all of this (at 10 months) I would tell her, 'now you can't

have your milk, cheese, etc. until you take a bite'...99% of the time there

is no squabble and the 1% she usually saves for us at home.

The only baby foods that I still buy are the fruits. They are convenient

for me to take anywhere and when we go out to eat I don't get worried

whether or not they will have mashed potatoes! Ha!

BTW, for those of you whose yungin's are able to swallow the whole thing -

at what age did this occur? I am afraid to let her try this. The coating

gets sticky when wet and I am paranoid that she will get choked!

's ( 2yow/cf) mom

" Sprinkle " on 07/19/2000 10:47:12 PM

Please respond to cfparentsegroups

To: cfparentsegroups

cc: (bcc: -Holmes/Louisville/Humana)

Subject: Re: enzymes and dining out

I have gotten some very strange looks. It would not bother me nearly as

bad

if someone just came up and asked why my daughter was taking this strange

looking capsule, but instead I often get looks like I am poisoning her food

or something. I especially get dirty looks when I have to really work to

get to open her mouth to take the enzymes. She clamps her mouth

shut

at the first few bites of anything because she knows the enzymes are hidden

in there. That is another story though.

S. - mom to andra (nocf), (wcf) and Charlie (nocf) - the

three energy vampires

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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

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Post message: cfparentsegroups

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[Guest guest]

I had a problem once dining out. I had asked for a glass of water so Moe

could take her meds (7 pancreacarb and 2 asacol) but it was too late the meal

was being served and the waitress did not seem to have the time to get it to

us so I took an empty juice glass of mine and filled it with water at the

station it was at. Everyone looked at me but I di not care I felt worse for

Moe who was sitting there with breakfast in front of her and only a mug of

hot tea (who can take capsules with hot liquid?). Ever since then before we

even order I ask for water! I don't care who sees us or what they think it

is more important to get that food in them! I have been lucky though Moe was

8yrs at diagnosis so she was able to swallow everything herself. I give you

guys with younger ones a lot more credit having to open the capsules etc..

Meg

[Guest guest]

-

was 3 and a half when she swallowed her enzymes. Right after her

dx. Now she takes all 5 at once without water! Unbelievable. the

pill princess. and I used to get looks when we were out but now she

just looks at them and says. Hi, I have cystic Fibrosis. That's why I take

all these pills. No fear!

Glad to be back and human again after a LOVELY root canal YUCK!

Kathy G. from Springville, NY (Mom to 6 w/CF and 3 w/o CF)