Re: new to board, have 3 sons with CF

October 28, 2002

Hi Tricia,

Welcome to the list. Our son Elliot used Tobi for 30 days and he has only one

kidney that functions. We did not have any problems. But believe I felt the

same way as you did when I read the side effects.

Good luck

Mom to Elliot 20 mths wcf

October 28, 2002

Hi Tricia,

Welcome to the list. Our son Elliot used Tobi for 30 days and he has only one

kidney that functions. We did not have any problems. But believe I felt the

same way as you did when I read the side effects.

Good luck

Mom to Elliot 20 mths wcf

October 28, 2002

Welcome, I have 3 kids with CF - two boys - gosh, I can't imagine 4 boys and

3 with CF - God Bless you!

After reading your post it reminded me why we must take it one day at a time.

Sometimes if we knew what tom. would bring we would hide! We are done Tobi

successfully - all havn't had bad side effects. Except my daughter, who

hated the taste and fought me - so she stayed on Coly.

Don't hestitate to ask questions, no one knows everything and if you aren't

going through or have experienced something questions are the only way to

learn. I have learned so much through everyone here.

Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

October 28, 2002

Welcome, I have 3 kids with CF - two boys - gosh, I can't imagine 4 boys and

3 with CF - God Bless you!

After reading your post it reminded me why we must take it one day at a time.

Sometimes if we knew what tom. would bring we would hide! We are done Tobi

successfully - all havn't had bad side effects. Except my daughter, who

hated the taste and fought me - so she stayed on Coly.

Don't hestitate to ask questions, no one knows everything and if you aren't

going through or have experienced something questions are the only way to

learn. I have learned so much through everyone here.

Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

October 28, 2002

Welcome, I have 3 kids with CF - two boys - gosh, I can't imagine 4 boys and

3 with CF - God Bless you!

After reading your post it reminded me why we must take it one day at a time.

Sometimes if we knew what tom. would bring we would hide! We are done Tobi

successfully - all havn't had bad side effects. Except my daughter, who

hated the taste and fought me - so she stayed on Coly.

Don't hestitate to ask questions, no one knows everything and if you aren't

going through or have experienced something questions are the only way to

learn. I have learned so much through everyone here.

Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

October 29, 2002

In a message dated 10/28/2002 4:12:31 PM Central Standard Time,

mechan5@... writes:

> Tricia

>

I know how you feel. I have three girls and two of them have CF and my

husband was diagnosed with Rheumatoid Arthritis. It's not easy when you feel

like you are the only one that is healthy. It's a lot of responsibility and

worry. But you have to find the time for yourself if that means getting on

here and talking to others late at night or sitting in a tub late at night

just to get away. There are programs out there too to help you with bills and

little get away. I finally got my oldest on a waiver program that pays for

bills that our insurance does not and you also have to use there services

which might mean having someone come in and giving you a break or someone to

clean the room that your child sleeps in. It's really nice and if you keep

bugging the hospital you will finally get the right person that will lead you

to the right program that will help you and your family. Deb A

October 29, 2002

In a message dated 10/29/2002 9:59:11 AM Central Standard Time,

mechan5@... writes:

> Tricia from NJ

We live in Iowa and I would start with you social worker you can also get

help through your county healthy department too. I found out about this

program through taking to one person and they gave me a name of another and

she gave me a name of another. So never give up eventually you will get to

the right person. My girls are 10 w/CF , Lynzie 8 wo/CF and Natalynn

5 w/CF. has been fighting PA for a year now and we are thinking it

is in her nose because she has been culturing it in her nose. We have tried

just about everything to get rid of it. She will be done with this round of

medication on Wed. so I am crossing my fingers that we got rid of it this

time. Natalynn has been pretty healthy until last week they called me and

told me she is positive with two kinds of bacteria one PA. So there is never

a dull moment at our house. My husband is on ibuprofen for is arthritis he

hates to go to the doctors because we have so many doctor bills the way it is

but I keep telling him if he doesn't go he is going to end up in a wheel

chair and I am going to be the one taking care of him so he better get it

butt in there. The bad thing is I am just as bad as he is not wanting to go

get things done for me too but I did get a physical this year YEA!! Anyway

just do what you can for yourself once in a while you deserve it. Deb A

October 29, 2002