Re: My daughter, Madeline wcf

[Guest guest]

Hi ,

Welcome to the group. Sorry to hear that your daughter has CF but we are happy

to have you here. Ask any questions and we will do our best to answer. My

daughter is 4 & 1/2 and was diagnosed at 9 & 1/2 months. Feel free to visit our

site at http://groups.msn.com/teamracheljane

My daughter, Madeline wcf

Hi everyone, My name is , I just joined this group today so I

don't know anyone. My daughter, Madeline was diagnosed with cf at 10

days old. We have been doing breathing treatments twice a day and

adjusting enzymes since then. She was hospitalized once in Dec. 2002

at 10 months old for psuedomonas. She has been through 2 doctors at

our clinic in Columbia, Missouri so far, they either move or retire

on us. She meets her 3rd doctor tomorrow. She has a regular apt.

every 3 months. She will get a deep gag swab to see if she has any

infections, and we will get a chance to talk with our nutritionist

and social worker. I have seen so much on herbals and supplements

since I have joined a few sites this week and I was wondering if

anyone could give me advice on what to ask my nutritionist about

tomorrow. Madeline is currently on Creon-5 and takes 2 pills with

every meal or every 3 hours while eating, she eats constantly, thank

goodness. She is only 20 pounds and hasn't gained weight is 2

months. She isn't having too many stools. I just feel like I'm not

very knowlegable about her diet. If anyone has any advice or a

comparable story or just wants to talk I would love to hear from you.

Thanks,

Mother of Madeline 1 wcf

[Guest guest]

Hi ,

My son Zach is 17 months old wcf. We found out four months ago. He

does cpt twice a day and Ultrase enzymes with meals and snacks.

Zach is 21 pounds but hasn't gained an ounce in two months. We go

to Cardinal Glennon in St Louis for our cf clinic visits, but we

live in ville, IL. I understand your frustration with the cf

diet. Zach eats a lot but always has diarrhea. WE are using a lot

of enzymes too. We are experimenting with the fact he may be lactose

intolerant and have had success limiting his dairy, but I would not

try it if your daughter is not having any loose stools.

Welcome to the list!

Sara - mommy to Zach 17 months wcf

> Hi everyone, My name is , I just joined this group today so

I

> don't know anyone. My daughter, Madeline was diagnosed with cf at

10

> days old. We have been doing breathing treatments twice a day and

> adjusting enzymes since then. She was hospitalized once in Dec.

2002

> at 10 months old for psuedomonas. She has been through 2 doctors

at

> our clinic in Columbia, Missouri so far, they either move or

retire

> on us. She meets her 3rd doctor tomorrow. She has a regular apt.

> every 3 months. She will get a deep gag swab to see if she has

any

> infections, and we will get a chance to talk with our nutritionist

> and social worker. I have seen so much on herbals and supplements

> since I have joined a few sites this week and I was wondering if

> anyone could give me advice on what to ask my nutritionist about

> tomorrow. Madeline is currently on Creon-5 and takes 2 pills with

> every meal or every 3 hours while eating, she eats constantly,

thank

> goodness. She is only 20 pounds and hasn't gained weight is 2

> months. She isn't having too many stools. I just feel like I'm

not

> very knowlegable about her diet. If anyone has any advice or a

> comparable story or just wants to talk I would love to hear from

you.

> Thanks,

> Mother of Madeline 1 wcf

[Guest guest]

Welcome ,

20 lbs for a 1 year old sounds pretty good. I think. I've heard she needs

to be 22 inches around her chest to get a vest. Not sure tho. My daughter

with cf is 19, we have had the vest since she was 13. Its great. We did cpt

forever. I don't know anything much about supplements,. my daughter won't

take anything unless her doc tells her to. There is advantage to them being

young, as they don't argue all the time. LOL

Nice to meet ya,

love,

M

mom of age 19wcf and Nick age 21 nocf

[Guest guest]

Hi - It may be worth it to periodically keep trying different

supplements until Madelaine finds something she likes ... also try each

in the different flavours. My son refuses Boost, Ensure, Resource, all

supplement puddings and soups, and all flavours of Scandishakes except

vanilla. However, vanilla Scandishakes have been VERY helpful in

maintaining his weight. He adds his own flavourings to the vanilla for

variety ... various liquid, flavour extracts such as cherry, maple,

mint or even rum (not real alcohol).

M

[Guest guest]

always refused to drink anything mixed in with her milk or any thing

like pediasure, sustacal etc. She turned out just fine, shes 5'3 " and weighs

about 130. So don't lose heart. Some times the kids grow even without

skandishakes etc.!

love,

Re: My daughter, Madeline wcf

> Thanks ,

> Madeline was measured for a vest yesterday at her CF Clinic, she's only 18

1/2 in around the chest and she is back down to 19 lbs. I don't know if

she'll get one or not!!! They also gave us some Nestle " Additions " which is

a powder you can pour into hot foods, it has no taste thank goodness.

Madeline refuses to drink her pediasure I bought her last night, have you

heard of anything better??