Re: question

[Guest guest]

Val,

I wish that getting to eat was so easy. This week she is suddenly eating

but from the age of 6 months to 5 years, she ate only very little. She got a

g-tube at 16 months. Take it as a blessing and let him eat until he's finished.

He may need enzyme adjustment for the constipation or just more water or

gatoraide.

mom of 5 with CF and one on the way

question

hi everybody!!

I didn't check my e-mail yesterday....when I went to bed I felt like

something was missing...It is funny how this board bacome part of

our lifes so fast...i love to ready all the posts and everybody in

this list...everybody is so positive, sweet and funny....I laugh a

lot w/ the " bulls...f..k.... " post.....I don't like curse words but

it was funny how the internet is trick...

anyway...I have a question...it is one of the most silly ones for

sure...I have no idea how to feed a baby...I think I am doing ok to

first time mum, without my mom close to help...but I fell like

something is wrong...first I guess I need to put more liquid in his

diet...he is really constipated (sp?)... and if I don't stop feeding

him he will eat until explode, at least I guess...like tonight, he

ate 1 jar of veggies, than 1/3 of veggies dices + 1/2 jar yogurt +

1/2 jar apple dices, 1 cracker + 1 oz gatorade + peices ok my

linguine w/ tomato sauce...I decide to take him out of the high

chair ( or he would be too heavy for me to lift)and he start

crying...I don't know if I am feeding him too much...too

little....anyone w/ a 11 months old that could help me?? ah, he is

breast feed 3 times a day + 2 meal + bf/meal in a total of 6 meals a

day. he is between the 40% of H and W.

love

val

[Guest guest]

Val,

It sounds to me like you are doing a really good job feeding Torin.

He's in the 40th percentile. That is GREAT! I am happy that you are

doing so well. Your CF Care Center should have a nutritionist that

you can talk to. You could get her phone number and call her when

you have a question.

Gale

> hi everybody!!

> I didn't check my e-mail yesterday....when I went to bed I felt

like

> something was missing...It is funny how this board bacome part of

> our lifes so fast...i love to ready all the posts and everybody in

> this list...everybody is so positive, sweet and funny....I laugh a

> lot w/ the " bulls...f..k.... " post.....I don't like curse words but

> it was funny how the internet is trick...

> anyway...I have a question...it is one of the most silly ones for

> sure...I have no idea how to feed a baby...I think I am doing ok to

> first time mum, without my mom close to help...but I fell like

> something is wrong...first I guess I need to put more liquid in his

> diet...he is really constipated (sp?)... and if I don't stop

feeding

> him he will eat until explode, at least I guess...like tonight, he

> ate 1 jar of veggies, than 1/3 of veggies dices + 1/2 jar yogurt +

> 1/2 jar apple dices, 1 cracker + 1 oz gatorade + peices ok my

> linguine w/ tomato sauce...I decide to take him out of the high

> chair ( or he would be too heavy for me to lift)and he start

> crying...I don't know if I am feeding him too much...too

> little....anyone w/ a 11 months old that could help me?? ah, he is

> breast feed 3 times a day + 2 meal + bf/meal in a total of 6 meals

a

> day. he is between the 40% of H and W.

> love

> val

[Guest guest]

In a message dated 12/5/2003 10:07:19 PM Central Standard Time,

woosky_val@... writes:

val

Are you giving him enzymes? Because if you don't they always feel hungry

because they are not getting the nutrition they need from the food and it comes

right out. Maybe if he is he is not getting enough enzymes. I would talk to you

doctor about it. Deb A

[Guest guest]

In a message dated 12/7/2003 12:14:17 PM Central Standard Time,

woosky_val@... writes:

hi

yes he has been on enzimes since the NICU. But the doctor decrease the amount

from 15/day to 9/day....I guess it is ok coz his bowl movement is not soft at

all....

love

val

Well, I would say he just has a big appetite and be happy he does because

their is a lot of people on her who's kid don't. Deb A

[Guest guest]

Gatorade is high in sodium, which compounds constipation in anyone,

even people with CF. Also, if you are giving him salty crackers then

you might replace with a cracker that offers more nutrients and

fiber, such as graham crackers.

He may also need enzyme adjustment, if he takes enzymes.

By the way, constipation is one of the greatest indicators of

magnesium deficiency.

Kim

--- " ANDREA FITTING " <drea@m...> wrote:

He may need enzyme adjustment for the constipation or just more water

or gatoraide.

----- Original Message -----

From: woosky_val

something is wrong...first I guess I need to put more liquid in his

diet...he is really constipated (sp?)... and if I don't stop feeding

him he will eat until explode, at least I guess...like tonight, he

ate 1 jar of veggies, than 1/3 of veggies dices + 1/2 jar yogurt +

1/2 jar apple dices, 1 cracker + 1 oz gatorade + peices ok my

linguine w/ tomato sauce...I decide to take him out of the high

chair ( or he would be too heavy for me to lift)and he start

crying...I don't know if I am feeding him too much...too

little....anyone w/ a 11 months old that could help me?? ah, he is

breast feed 3 times a day + 2 meal + bf/meal in a total of 6 meals a

day. he is between the 40% of H and W.

love

val

[Guest guest]

Kim,

I thought that we were supposed to give our children wcf a lot of

salt. That is why we give Abby all of the Gatorade. I wonder now,

if all this Gatorade is such a smart idea???

Gale

> He may need enzyme adjustment for the constipation or just more

water

> or gatoraide.

>

>

> ----- Original Message -----

> From: woosky_val

>

> something is wrong...first I guess I need to put more liquid in his

> diet...he is really constipated (sp?)... and if I don't stop

feeding

> him he will eat until explode, at least I guess...like tonight, he

> ate 1 jar of veggies, than 1/3 of veggies dices + 1/2 jar yogurt +

> 1/2 jar apple dices, 1 cracker + 1 oz gatorade + peices ok my

> linguine w/ tomato sauce...I decide to take him out of the high

> chair ( or he would be too heavy for me to lift)and he start

> crying...I don't know if I am feeding him too much...too

> little....anyone w/ a 11 months old that could help me?? ah, he is

> breast feed 3 times a day + 2 meal + bf/meal in a total of 6 meals

a

> day. he is between the 40% of H and W.

> love

> val

[Guest guest]

Gale,

I think there is no cookie cutter approach for each child. And personally, I

believe potassium replenishment

is much more important than sodium replenishment, but again, you need to look at

the individual. Too much

sodium can actually exacerbate bone problems, leading to osteoporosis. Sodium

replacement might be

necessary in hot environments, and when the child has a fever, but to give

Gatorade every day? I think I

would hesitate to do that... but again, depends on the child's needs. Your body

has the ability to tell you what

it needs if you listen...

Kim

> > He may need enzyme adjustment for the constipation or just more

> water

> > or gatoraide.

> >

> >

> > ----- Original Message -----

> > From: woosky_val

> >

> > something is wrong...first I guess I need to put more liquid in his

> > diet...he is really constipated (sp?)... and if I don't stop

> feeding

> > him he will eat until explode, at least I guess...like tonight, he

> > ate 1 jar of veggies, than 1/3 of veggies dices + 1/2 jar yogurt +

> > 1/2 jar apple dices, 1 cracker + 1 oz gatorade + peices ok my

> > linguine w/ tomato sauce...I decide to take him out of the high

> > chair ( or he would be too heavy for me to lift)and he start

> > crying...I don't know if I am feeding him too much...too

> > little....anyone w/ a 11 months old that could help me?? ah, he is

> > breast feed 3 times a day + 2 meal + bf/meal in a total of 6 meals

> a

> > day. he is between the 40% of H and W.

> > love

> > val

[Guest guest]

Kim,

Thank you. I will forward your message to my daughter to read. I am

glad that you are on this list and I hope that you always stay on

this list!

Gale

> > > He may need enzyme adjustment for the constipation or just more

> > water

> > > or gatoraide.

> > >

> > >

> > > ----- Original Message -----

> > > From: woosky_val

> > >

> > > something is wrong...first I guess I need to put more liquid in

his

> > > diet...he is really constipated (sp?)... and if I don't stop

> > feeding

> > > him he will eat until explode, at least I guess...like tonight,

he

> > > ate 1 jar of veggies, than 1/3 of veggies dices + 1/2 jar

yogurt +

> > > 1/2 jar apple dices, 1 cracker + 1 oz gatorade + peices ok my

> > > linguine w/ tomato sauce...I decide to take him out of the high

> > > chair ( or he would be too heavy for me to lift)and he start

> > > crying...I don't know if I am feeding him too much...too

> > > little....anyone w/ a 11 months old that could help me?? ah, he

is

> > > breast feed 3 times a day + 2 meal + bf/meal in a total of 6

meals

> > a

> > > day. he is between the 40% of H and W.

> > > love

> > > val

[Guest guest]

You can send your story to me Leanne.....Or you can send it to Karyn .

If you send it to Karyn, she will put it on the PAI site...If you send it to me,

I will put it on the top5plus5 site. You can also send it to both of us and

have it on both sites. lol

I hope this finds you and yours well

Mark E. Armstrong

casca@...

www.top5plus5.com

PAI NW Rep

ICQ #59196115

question

How do we summit the stories for the Site, or who do we send it to.

Leanne

[Guest guest]

Hi Leanne,

To get your store posted on the PAI website

(www.pancassociation.org), send them to Karyn at

KarynWms@... .

Cheers,

--Tull

Assistant Moderator

Pancreatitits Association, Int'l

> How do we summit the stories for the Site, or who do we send it to.

>

> Leanne

[Guest guest]

Tami wrote:

If the pain is brought upon by exercise or exertion of some type does that mean

it is

causing damage to the pancreas at that time or is it just flared up??? (snip)

since I do a lot

of physical activity and lately it has been flaring this pain up and I wonder if

I am doing

more harm than good??

Tami,

That's a good question and one that I've never been able to find an answer to.

Does

physical activity actually damage the pancreas when one has chronic

pancreatitis? All the

doctors I've talked to have suggested that I limit physical activity. I asked

one if I could

alpine ski, as I've been an active skiier since before kindergarden. He flat

out said " No,

under no conditions " and proceeded to ask me why I would want to partake in any

activity

that would only cause pain. Truth of that is, of course, no, I don't want to do

any sports

activity that's going to bring on pain or create another severe pancreatitis

attack.

Over the past three years I've found lots of " activities " that cause pain, most

of them aren't

sports related at all....housework, laundry (bending in and out of the washer

and dryer

repetitively), vacuuming, bending, lifting, raking, gardening, pushing a

wheelbarrow or

pulling a tarp full of debris. The list goes on and on. While I know that all

of these

activities cause pain, I can't answer whether or not they actually " damage " the

pancreas.

But I've learned to be really shy of pancreas pain, whether it's causing damage

or not, it's

not pleasant to have, so I try to avoid overdoing any activity that I know will

bring the pain

on. JMO.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology.htm#Heidi

South Carolina

SC & SE Regional Rep.

PAI

Note: All information or advice is personal opinion only, and should not be

substituted for professional medical consultation.

[Guest guest]

Hi Kris; I get that too. Kind of like pins and needles but mine is

more in my neck; up the side of my head and down my right arm to my

fingertips. I also get very dizzy if I turn my head a certain way.

Yes and that feeling of being crawled on, yes in my neck then up in

my hair. Drives me nuts.

I had a mri of the spine last spring. They saw some herniation in

the cervical collar and I am seeing a neurosurgeon next week. I was

wondering if it could cause pain radiating downward to my scapula

and across my clavical. I know that it is not what is causing my

panc but maybe it aggrivates it some how. The neurosugeon I am

seeing is a friend as well as a co-worker. He is one of the top

100 in the world, really.

I'm not saying we have the same thing. I'm not saying anything, the

radiologist said it all so I am getting my head examined. It

couldn't hurt to have your spine checked out. That pins and needle

going to sleep sensation is typical " pinched " nerve red flag.

Good luck,

> Hi everyone, just wanted to ask another question. I seem to have

> this feeling in my back (besides the pain) as if it is falling

> asleep. The kind of feeling that you have when your hand or foot

> has fallen asleep only it is located in my upper back next to my

> spine on the left hand side. It is the same place where I get

pain

> when I am hurting from CP. Sometimes I feel like it is a bug

under

> my shirt or something. Does anyone else get this?? Any ideas

would

> be appreciated. Thanks...

> Take care

> Kris in TN

[Guest guest]

Hi Kris,

I get that feeling quite often...not sure why or what it means or if it

is associated with increasing pain / nausea....

Laurie

[Guest guest]

You know Suzi...I feel like I'll be viewed as a hypochondriac

sometimes because I don't want to always project to doctors/others

the " I have that too " syndrome and there's been much discussion on

another board that I go to on a wide range of " strange " symptoms

that often accompany CP. Having said that, however, I've gotten

very achy legs and it is in my calves and sometimes it feels like

it's in the bone itself the ache is so deep....I've just been

blowing it off as nothing (I mean compared to all the other awful

symptoms that go hand and hand w/cp - those symptoms seem sort of

trivial I guess.) Just wanted to let you know though that I DO get

that from time to time and it usually happens at night for some

reason. Can't say it's related to cp necessarily but the flu-ish

symptoms I think are definitely related. Do you get any swelling in

your legs? I have been lately along with this awful bloating and

distended stomach. If your legs feel swollen at all it could be

edema of some sort. I'm so swollen and bloated that I've put on 5

lbs since Monday of this week!! For some unknown reason, I've been

retaining water or something....maybe I should ask the doc about

diuretics. Anyway, just wanted to add my 2 cents...hope you're

feeling better soon!!

> OK, maybe this has been discussed before, but I am wondering if

> anyone else suffers from legs that ache really bad at night. Is

this

> a Chronic pancreatitis thing? Or maybe I have been exercising way

> too much? :-) Ha Ha! I am saying that tongue in cheek because I

> haven't felt like exercising in a very long time. Occasionally I

also

> get really bad leg cramps, but the ache in the legs has been every

> night, and it is getting worse as time goes on. Any insight?

Thanks

> in advance. I hope you all are having a pain free day!

> Suzi B.

> Colorado

[Guest guest]

Hi Suzi B,

Just a thought, but it may be likely your ache in the legs is present in the

daytime too, but with other activities going on and your ability to not focus

on the discomfort minimizes the condition. But, at night, when all is done,

and you try to get to sleep, the condition just cannot be ignored any longer.

So, the condition exists but you are just more conscious of it at night.

The cause can be many things and certainly something other than Panc. It

might be good to have this checked by your GP as a separate issue.

Best wishes, Poncho - GA

[Guest guest]

Suzi,

Could your potassium or magnesium be low? That can cause your legs to ache or

cramp? I can throw up once and my potassium bottoms out even though I take 10

mEq of Potassium every day. With CP, even when we are able to eat well, our

bodies don't always absorb all the nutrients. Maybe you should have your doc do

a blood test to check your potassium and magnesium level.

[Guest guest]

> OK, maybe this has been discussed before, but I am wondering if

> anyone else suffers from legs that ache really bad at night.

Suzi,

I don't know if it has anything to do with the CP or not, but I get

pain in my legs every night. I just atribute it to the fact that I

have to sleep in a recliner. I also have heard that it may have

something to do with potassium levels too. Since I have been " laid

up " with my back, I get very worried with any pain in my legs. I

also had a DVT (blood clot in leg) about 2 years ago, so I try to

move my legs around even though I can't walk yet. Come to think of

it, when I was a child I used to get awful leg and foot cramps . I

was then told to drink some orange juice with alitte salt and sure

enough the pain would subside! I also find that a heating pad helps

too. I just lay it across both legs and it helps with the pain. Of

course, you should always mention leg pain to your doctor. Hope

this helps.

Take care

Kris in TN

[Guest guest]

Wow , that is fantastic. I had my surgery on April 23rd and I'm only

down about 50 lbs. I'm jealous....lol. What are you doing to do so well?

Guess I shouldn't compare but I'm on this stupid plateau and can't seem to get

off, it's very frustrating. I've been losing inches but still....grrrrrr!!!!!

Laurette

4/23/04 open rny

309/290/240/150

[Guest guest]

Open RNY is a form of gastric bypass surgery

A pouch is created and a portion of the intenstine is rerouted. I

had Open RNY on April 21, 2004 - 17 weeks out TODAY and I've lost 98

pounds. 71 pounds til I reach goal. (140)

-- In Gastric_Bypass_Family , jenn24_08009@y... wrote:

> What is the difference between Gastric Bypass Surgery and open rny?

[Guest guest]

Wow !!!! I know I shouldn't compare, but that's fantastic!

Lap RNY April 9, 2004

348/274/140 (begin/current/goal)

www.carrieburns.net

> Open RNY is a form of gastric bypass surgery

> A pouch is created and a portion of the intenstine is rerouted.  I

> had Open RNY on April 21, 2004 - 17 weeks out TODAY and I've lost 98

> pounds.  71 pounds til I reach goal. (140)

>

>

> -- In Gastric_Bypass_Family , jenn24_08009@y... wrote:

> > What is the difference between Gastric Bypass Surgery and open rny?

>

>

>

>

>

[Guest guest]

Good question...LOL!!!

> If all of us are sitting here answering eachothers email's why the

> heck aren't we in a chat room? *laughs* I mean wouldnt that be

> easier? Just a thought,

>

[Guest guest]

Well If im not mistaken this site has a chat option why dont we

use it *snickers* look to the left it says " chat " LOL j/k but

seriously why aren't we using it?

> > If all of us are sitting here answering eachothers email's why

the

> > heck aren't we in a chat room? *laughs* I mean wouldnt that be

> > easier? Just a thought,

> >

[Guest guest]

you need to find SUGAR FREE...

tee

decemberfemale66@... wrote:

I found some Carnation Instant Breakfast but I think I got the wrong

one, it has 20g of sugar. That was the only one that the store had,

so if I do it with skim milk can I use it or do I need to take it

back.

[Guest guest]

>

> Anya has a flare for the first time since we started SCD on May 28th. We do

> not know yet whether she ate something illegal or it is just a flare. Doctor

> ordered blood and many stool analyses.

> We went back to intro diet and has been on it from Monday to Friday, but

> although she does not go potty more than twice a day it is still loose. We

> stopped giving her the Scdophilus.do you think we should continue it or

> better wait till loose BM stops?

> We are still giving her every morning her fourth of a tablet of Mp6 and

> Freeda's one fourth of a multivitamin,

>

In response to your first question,- congratulations! You are right on schedule

with the

three month regresssion Elaine mentions on page 70 BTVC, editon 10, first

paragraph,

Progress usually resumes once you get past this.

Sorry I do not know what to say about the New York Cheesecake. Where did you

find the

recipe? Was it in SCD files?

Carol F.

[Guest guest]

The recipe has been with my family for a long time. It came in the

Osterizer blender but it calls for illegal cottage cheese and sugar instead

of honey, so I just adapted it.

Anya 3 yrs. 10 mo.

>

UC diagnosed 5/24/06

SCD started 5/28/06

Meds Mercaptopurine

>

>