Re: Hello! to Grandma to Autumn

[Guest guest]

HiGrandma to Autumn . My 18 year old and my 5 year old w/cf both had severe

reflux my 3 year old also had it.My 18 year old still is bothered by it at

times. My 5 year old had it so bad she had a terrible time keeping anything

in her tummy,she had a nissen fundoplication and a g-tube placed at 8-9

months and she stopped throwing everything up. On the issue of medical help

where do you live? If you could call DSS and ask for an appointment with a

case manager to find out what your child needs there are programs made for

sick kids such as crippled childrens services,special childrens centers,

genetics thru UT if you are in Tennessee.DSS has a program called a waiver

program it waives income for the child to get meds.The Department of Social

Services is the best place to start.If you go to a CF center they may have

information on where to get help.BeckyB.-Mommy to 8 kids2/w-cf and Nana to 2

[Guest guest]

Hi Becky! We live in Michigan. I will check with social services to

see what kind of programs are available here.Autumns mom() has

applied for a cash grant but with no car she is unable to find work(

a requirement to have a cash grant here) My income pays bills and for

everything else. Luckily she has medicade to pay for Autumns meds.

There just seems to be this problem with the Pulmozyme. We dont know

if medicade will pay for it.Her acid reflux as so far been

successfully controlled by Zantac and Reglan. She inhales Pulmozyme

in the morning and Albuteral in the afternoon and she takes Ultrase

enzymes(3) before each feeding.She has pnumonia right now(second

time) but we caught it early and perhaps the antibiotics will take

care of it with out hospitalization.She was a week in intensive care

last time.Sometimes it seems like Im holding my breath all the

time.... Thanks for the advice! (Autumns grandma)

> HiGrandma to Autumn . My 18 year old and my 5 year old w/cf both

had severe

> reflux my 3 year old also had it.My 18 year old still is bothered

by it at

> times. My 5 year old had it so bad she had a terrible time keeping

anything

> in her tummy,she had a nissen fundoplication and a g-tube placed at

8-9

> months and she stopped throwing everything up. On the issue of

medical help

> where do you live? If you could call DSS and ask for an appointment

with a

> case manager to find out what your child needs there are programs

made for

> sick kids such as crippled childrens services,special childrens

centers,

> genetics thru UT if you are in Tennessee.DSS has a program called a

waiver

> program it waives income for the child to get meds.The Department

of Social

> Services is the best place to start.If you go to a CF center they

may have

> information on where to get help.BeckyB.-Mommy to 8 kids2/w-cf and

Nana to 2

>

>

>