Re: hello all. new member trying to figure this out

Posted August 5, 2003 · August 5, 2003

Well, our cfer eventually ended up on pureed beef formula (Gerber's)

and just loved it--uk!

Just a thought, typing out loud,

n Rojas, wcf, Mom of 3 adults, two carriers (one with lactose

intolerance; one with allergy to milk, and of course, the youngest wcf;

all still kicking on our strange and incompatible diets!

Posted August 6, 2003 · August 6, 2003

Hi Ashauna,

I'm glad that you found your way here! As I posted to you on the other site,

I'm in PA so I'm no help with the local support group, but this one is about as

local as you can get-as close as your computer!

I have 2 questions-About the formula, have you switched brands? And has Colgan

been tested for reflux? My daughter hated milk based formulas. The only ones

she would take was Isomil (soy based). CF clinic wanted her on the milk based

ones but she just wouldn't take them. Also her Reflux was horrible! As a

result, she learned quickly that if she didn't eat there was no reflux-so she

chose not to eat. (yes even at about 6 months when her eating problems started I

think she had already figured this out)

You could ask about this at CF clinic.

hello all. new member trying to figure this out

Hello my name is Ashauna. My son is almost 7 months old and was diagnosed

with cf at 2 weeks of age. This was after he had a surgery for merconium

peritinitis ( spelling is probably wrong ). At first he was not having any lung

involvment, but has developed it as time has gone on. We live in Florida ( very

new to the area and are looking to learn anything that we can about this

disease. My husband is in the military and is away right now so I was wondering

if anyone knew of any live support groups in the Fort Walton Beach area.

Perhaps none of you live in this area but may have an idea of where to look.

My son's name is Colgan Garrett Byrum like I said he is about 7months.

He weighs 14 lbs. It seems like I am never going to get weight on this little

one perhaps there are some ideas for a child who really hates his formula.

Posted August 6, 2003 · August 6, 2003

,

No he has not been tested for reflux. He is on zantac and reglan

and also is having formula thickened with 1 tbls. rice cereal per ounce.

My GI doc is kind of reluctant to do the test because does not want to

induce it.

The formula that he is on is pregestimil and it is milk based (

for the same reason docs want him on it)

I see them again on the 11 of this month and I am really hoping

that they give me some sort of answers this time.

Thanks

Ashauna

Posted August 7, 2003 · August 7, 2003

DEAR ASHAUNA,

MY NAME IS KAREN. MY SON CODY IS 16 MONTHS OLD. I LIVE IN CONNECTICUT, SO I

DON'T KNOW OF ANY SUPPORT GROUPS IN YOUR AREA HOWEVER ABOUT THE FORMULA: MY SON

CODY HAD A PROTEIN ALLERGY NOT RELATED TO CF. HE WAS ON A FORMULA CALLED

NEOCATE. THIS FORMULA WAS COMPLETELY BROKEN DOWN, SO HE DID NOT EVEN NEED TO

TAKE ENZYMES WITH THIS FORMULA. THE DOWN SIDE IS THIS FORMULA IS VERY EXPENSIVE.

ABOUT $32 DOLLARS A CAN AND IT ONLY LAST 2-4 DAYS. CHECK WITH YOUR DOCTOR AND

INSURANCE. SOME STATES IT IS MANDITORY FOR INSURANCE TO COVER THIS FOR MEDICAL

REASONS. CODY IS NOW 16 MONTH AND WEIGHS 24 1/2 POUNDS AND DOING GREAT. I DON'T

KNOW FOR SURE IF IT WAS THE FORMULA BUT HE HAS NEVER HAD A WEIGHT ISSUE YET.

LOVE & THOUGHTS OF A SAFE RETURN OF YOUR HUSBAND

KAREN CODY 16MONTHS W/ CF