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Hi my name is and I have one child with cystic fibrosis. She is 11 years

old now. She had a feeding tube put in when she was a baby. She has a special

medical drink that she drinks 3 times a day. If she can't finish it the rest

goes in her tube. She is also on a machine overnight to give her more

calories. She eats a little but has a hard time unless the food is soft like

yogurt or

pudding. She never seems to have an appetite but then she is getting alot of

liquids throughout the day. But she needs these to gain weight. She started

middle school this year and we haven't been able to get the bus because it comes

so early and her school starts at 8:10. I have to drive her and she gets the

bus home. Her elementary school bus came at 8:30 and she was usually ready and

if not I had until 9:00 to get her there. Hopefully we can start to get

everything done so she can start getting on the bus. She has also been having a

problem with dry skin and it gets itchy on her face. She is on something

overnight called perative and I am wondering if this could be causing it. She

was

always on vivonex before. They found out in May that she doesn't have a milk

allergy anymore so now they are giving her more milk products. Vivonex did not

have

any milk in it. Perative is easier I just have to open 4 cans every night and

put it in the kangaroo feeding bag. The vivonex had to be mixed in a blender

with water measured exactly right and sometime add something called duocal for

calories. I did this for 11 years every night until the perative in July. I

would rather not use perative if this is causing the itching. She was also on

pregestimal for 9 years. It had to be mixed in the blender also with water

measured. It had to go in her tube 3 times a day because the taste was so bad. 2

years ago they gave her someting called E028 a pineapple drink and she likes

it. They now want her to switch over to boost instead because it is a milk

product but she doesn't like the taste. I know they are annoyed at her and I

hope

they continue to renew her script with the insurance company for it. She gets

her feeding supplies from a company called Apria Healthcare. They said if she

likes it she should have it. Does anyone have any experience with feeding tubes

and these products. She is happy and does well in school.

Thank-you for listening.

Love,

- mother of Athena wcf