daughters weight problem

[Guest guest]

Hi Jen, I hope this finds you well today. I don't know where your from, but

I'm from Alabama. I have a 4 year old daughter with CF she has alot of

digestive problems. We've worked really hard on them also. Plus she gains

weight really slowly. She was taking alot of enzyemes and having stomach

pains. Plus she developed a rectal prolaspe from always feeling that she had

to use the restroom. I don't know what you have tried medication wise or what

is available to you where you live but I will tell you what my daughter takes

and it really has helped. She finally has gotten up to 34 lbs. She stayed at

25 lbs forever it seems. I didn't think she would ever get to 30 lbs. Anyway

she takes zantac (1tsp 2x's aday), Periactin ( 1tsp 2x's aday), zyrtec (1tsp

at bedtime ), The periactin is a antihistime but it also increases the

appettite. I have seem wonders in her appettite since she's been taking this.

Plus she takes pancrease MT10. 3 with meals, 1 with snack. She takes them

right before she eats. Now that she can swallow the whole pills and I don't

have to break them open and since she takes them before she eats ahe doesn't

have stomach pains anymore. The doctor also has her drinking 2 scandi-shakes

aday. That helps cause there is around 600 calories per shake. They want her

to drink 3 aday but that is alot for a 4 year old. Has your daughter ever

tried them. They taste really good and come in 4 flavors I think. I hope some

of this can help you and your daughter. Feel free to email me anytime. Kathy

[Guest guest]

the doc's have been playing with kayla's enzymes since she was

diagnosed...she just seems to be loosing more and more weight...even

though she eats like a horse. we've tried taking them at different

times during her meal but by the time she's half way through, she's

on the toilet. when she was diagnosed she was 5 and weighed 20lbs.

she was a little etheopian, she still has the malnourished belly. the

reason she's on so much ibuprophen(6per day) is there doing a

clinical trial, stating that increased dosages of it will decrease

the onset of lung disease with age. i just don't understand it

because it thins the blood which her's is already thin. but i

appreciate the info on it and i will check it out with the doc. thank

you. kayla also takes 6 ecs20's for a meal and 4ecs8's. for a snack

she takes 4ecs20's and 2ecs8's. so she takes alot. i also make her

come home for lunch now just so i can be sure she's taking them..she

has alot of friends over, and they don't seem to mind her taking

them, and if they question it were always happy to explain. it helped

with her teacher being educated in it also. anyways, i'm off for

now....thanx again

jen mom of 11yr. old w/cf

[Guest guest]

Hi Jen,

Just some thoughts which you probably have already tried and thought of but

I'll go ahead and say them just in case.

I think you said your daughter has lots of tummy problems which the ibuprofen

can also cause. You might want to ask your doctor about that. Have they

tried other enzymes as some work better than others depending on the person.

My daughter who is 13 takes a prescription for Zantac twice a day which helps

her stomach and she drinks 2 carnation instant breakfast drinks per day made

with half and half. I wish she liked the scandi shakes cuz they have much

more calories but she doesn't. There's also a powder product called scandical

that you add to drinks and food which is tasteless. She also drank a tbsp of

olive oil in her juice for a while.

She gained a ton of weight when they put her on prednizone for a month and

thankfully didn't lose it when she went off. There is a medicine that they

can give to increase your appetite but her doctors don't want to give it to

her as it can cause late menses.

Her weight gain is slow but steady now.

It seems so unfair at times as I'm trying to lose weight and trying to get

her to gain.

yvonne price

mom to Madison and Ariel (10 no cf)

[Guest guest]

Jen

at 11, I have no idea how to get them to eat.....all of the teenage foster

kids we have had have eaten us out of house and home, lol...

have they tried adding prilosec to increase the efficacy of the enzymes?

have you tried stuff like ben and Jerry's ice cream, special shakes, etc?

Chocolate peanutbutter (jiff)? tons of chips and dip, don't all teens pig

out on that stuff?

I am fortunate that my kids are good eaters.....in fact, like you describe,

they try really hard to eat us out of house and home. Mallory actually does

well in the weight area, but for and ph it is a struggle, in spite

of the fact that they eat way more than the other kids. hopefully, some day

they will have an answer.

have they considered tube feedings?

Take care

Jen

Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA,

port-a-cath; 5 with CF, port-a-cath; 6, Miranda 9, Mollie 8

with Type 1 diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to

4 yo with CF

[Guest guest]

Jen

How much does Kayla weigh? Moe will be 11 Sept. 1st and she is starting 6th

grade. She weighs about 74lbs.

Meg

Mom of 3

Moe 10yowcf, Kate 5yowocf & Jack infant wcf

[Guest guest]

Jen,

One more thing have you tried watching her reaction to dairy? Maureen is

Lactose Intolerant and cannot drink regular milk it must be Lactose Free.

This is hard because she cannot eat ice cream, yogurt, regular pizza, etc.,

but I make homemade pizza with lactose free cheese (ALL KRAFT SHREDDED BAG

CHEESES CONTAIN 0g LACTOSE IT EVEN SAYS SO ON THE BAG. THEY MAKE SWISS,

CHEDDAR, MONTEREY JACK, MOZZARELLA etc..) By eliminating lactose that seemed

to help some with pain. She is also on Prilosec so is Jack at 8 months old.

Meg

Mom of 3

Moe 10yowcf, Kate 5yowocf & Jack infant wcf

[Guest guest]

Hello from a fellow Canadian, Happy Canada Day!

We are 48 hours into a 72 hour stool sample too...oh yeah. Of course, for the

first time EVER in her life she only pooed once today. Go figure. We are also

trying to sort out why my daughter isn't gaining weight, even with a big

appetite, a high (I think, anyway) calorie intake and a mutation that is

supposed to be pancreatic sufficient. We have also been mixing sunflower oil

into her juice and spreading it on pasta, vegies etc. and this seems to go down

very well with her. We were just at the clinic in TO and they are running this

analysis and some others so I'll let you know if they come up with any ideas.

The GI doctor at our clinic really seemed excellent.

Good luck and welcome to the list,

Jane, mom of , Tony, , Meredith - all w/o cf, Eleanora (21 mos)

?cf/RAD/FTT and one on the way.

jen72ca@... wrote:

> the doc's have been playing with kayla's enzymes since she was

> diagnosed...she just seems to be loosing more and more weight...even

> though she eats like a horse. we've tried taking them at different

> times during her meal but by the time she's half way through, she's

> on the toilet. when she was diagnosed she was 5 and weighed 20lbs.

> she was a little etheopian, she still has the malnourished belly. the

> reason she's on so much ibuprophen(6per day) is there doing a

> clinical trial, stating that increased dosages of it will decrease

> the onset of lung disease with age. i just don't understand it

> because it thins the blood which her's is already thin. but i

> appreciate the info on it and i will check it out with the doc. thank

> you. kayla also takes 6 ecs20's for a meal and 4ecs8's. for a snack

> she takes 4ecs20's and 2ecs8's. so she takes alot. i also make her

> come home for lunch now just so i can be sure she's taking them..she

> has alot of friends over, and they don't seem to mind her taking

> them, and if they question it were always happy to explain. it helped

> with her teacher being educated in it also. anyways, i'm off for

> now....thanx again

> jen mom of 11yr. old w/cf

>

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[Guest guest]

Hi Jane,

just a quick comment and sorry for not having the time right now to

go into the details, but could you ask your doc what he thinks about

the use of sunflower oil. There seems to be a problem with certain

fatty acids (NOT fatty asses, LOL)in pwcf and due to that olive oil

or your special canadian canola oil seem to be more helpful than

sunflower oil.

Bye

Torsten

> Hello from a fellow Canadian, Happy Canada Day!

> We are 48 hours into a 72 hour stool sample too...oh yeah. Of

course, for the

> first time EVER in her life she only pooed once today. Go figure.

We are also

> trying to sort out why my daughter isn't gaining weight, even with

a big

> appetite, a high (I think, anyway) calorie intake and a mutation

that is

> supposed to be pancreatic sufficient. We have also been mixing

sunflower oil

> into her juice and spreading it on pasta, vegies etc. and this

seems to go down

> very well with her. We were just at the clinic in TO and they are

running this

> analysis and some others so I'll let you know if they come up with

any ideas.

> The GI doctor at our clinic really seemed excellent.

> Good luck and welcome to the list,

> Jane, mom of , Tony, , Meredith - all w/o cf, Eleanora

(21 mos)

> ?cf/RAD/FTT and one on the way.