Re: HI- IM NEW TO THE LIST! (LOOONG)

[Guest guest]

Don't worry too much yet My son is 18mos and was just diagnosed 2

mos ago. He gained really well up until about 14mos. I guess the

pancreas can work for awhile before it gets " clogged " with mucous.

We got our older child tested just to put our minds at ease.

Wendi

Mom to Keira (3 wocf) and (18mos wcf)

> HELLO- MY NAME IS KARI, IM VERY NEW TO THIS AND AM STILL CATCHING

ON

> TO ALL THIS INTERNET STUFF! I HAVE 2 CHILDREN BREAWNA-4 & DAVID-J

> 10MO., DAVID-J IS THE ONE WHO IS BEING SENT TO A CF CENTER BECAUSE

HE

> HAS ALL THE SYM. OF CF. IT IS IN THE FAMILY AND WE KNOW SO FAR HE

IS

> A CARRIER. WE ARE WAITING FOR THE RESULTS ON A TEST TO SEE MORE

THAN

> THE 25 MOST COMMON GENES THAT THEY HAVE ALREAD TESTED HIM FOR. HE

HAS

> HAD A NEG SWEAT TEST, BUT AS IM LEARNING FROM MANY CFERS ITS

POSSIBLE

> TO HAVE IT AND TEST NEG.MY HUSBAND AND I ARE BEING TESTED OURSELFS

ON

> MONDAY, AND AFTER HEARING ALL THESE STORIS HERE AND NOW GOING TO

SEE

> ABOUT GETTING MY DAUGHTER TESTED. MY BIG CONCERN IS HE(DAVIV-J) WAS

A

> BIG 9LBS BABY AT BIRTH AND NOW AT 10MO. JUST FINALLY HIT 15 LBS

THIS

> WEEK. I NEW HE WAS SMALL AND ONLY GAINING 1 OUNCE A WEEK, BUT I

DIDNT

> KNOW THE EFFECTS OF NOT GAINING INTILL I ASKED THE DR. HOW WORRIED

> SHOULD I BE, AND HE SAID- WELL IT IS A CONCERN BUT I THINK HES

> GETTING ENOUGH TO HIS BRAIN STEM. WHAT DID THAT MEAN? I LOOKED IT

UP

> AND IT SAID IT COULD EFFECT HIM MENTALLY AND PHYSICALY LATER IN

LIFE,

> IS THAT TRUE? AND SHOULD I BE REAL WORRIED? HE IS SUCH A GOOD

EATER,

> WHERE DOES IT ALL GO? WELL THANK YOU TORSTEN FOR INVITING ME TO

THIS

> GROUP, IT WOULD OF TOOK ME FOREVER TO FIND IT MYSELF, AND YOUR

RIGHT

> THIS IS MORE FOR ME! - KARI MOM OF BRE- NO-CF, DAVID-J CF?-CF

CARRIER

[Guest guest]

Kari,

Welcome to the list!! Your son sounds a lot like mine, weighed 12 lbs

at 9 months, (and was totally of the growth chart) which was when he was dx.

His cf doctor also warned us about the malnutrition and its affects, but

is now 6 1/2 years old and doing GREAT. When he was dx they put him on

Nutramigen (infant formula) and Polycose (extra calories) and within 3 months he

looked like a " normal, healthy " 1 year old, he even had pudgy cheeks. I

wouldn't worry too much as long as they have him on a special formula and

something along the lines of Polycose.

Take Care,

Deana

Mom to 12 nocf and 6 1/2 wcf

HI- IM NEW TO THE LIST! (LOOONG)

HELLO- MY NAME IS KARI, IM VERY NEW TO THIS AND AM STILL CATCHING ON

TO ALL THIS INTERNET STUFF! I HAVE 2 CHILDREN BREAWNA-4 & DAVID-J

10MO., DAVID-J IS THE ONE WHO IS BEING SENT TO A CF CENTER BECAUSE HE

HAS ALL THE SYM. OF CF. IT IS IN THE FAMILY AND WE KNOW SO FAR HE IS

A CARRIER. WE ARE WAITING FOR THE RESULTS ON A TEST TO SEE MORE THAN

THE 25 MOST COMMON GENES THAT THEY HAVE ALREAD TESTED HIM FOR. HE HAS

HAD A NEG SWEAT TEST, BUT AS IM LEARNING FROM MANY CFERS ITS POSSIBLE

TO HAVE IT AND TEST NEG.MY HUSBAND AND I ARE BEING TESTED OURSELFS ON

MONDAY, AND AFTER HEARING ALL THESE STORIS HERE AND NOW GOING TO SEE

ABOUT GETTING MY DAUGHTER TESTED. MY BIG CONCERN IS HE(DAVIV-J) WAS A

BIG 9LBS BABY AT BIRTH AND NOW AT 10MO. JUST FINALLY HIT 15 LBS THIS

WEEK. I NEW HE WAS SMALL AND ONLY GAINING 1 OUNCE A WEEK, BUT I DIDNT

KNOW THE EFFECTS OF NOT GAINING INTILL I ASKED THE DR. HOW WORRIED

SHOULD I BE, AND HE SAID- WELL IT IS A CONCERN BUT I THINK HES

GETTING ENOUGH TO HIS BRAIN STEM. WHAT DID THAT MEAN? I LOOKED IT UP

AND IT SAID IT COULD EFFECT HIM MENTALLY AND PHYSICALY LATER IN LIFE,

IS THAT TRUE? AND SHOULD I BE REAL WORRIED? HE IS SUCH A GOOD EATER,

WHERE DOES IT ALL GO? WELL THANK YOU TORSTEN FOR INVITING ME TO THIS

GROUP, IT WOULD OF TOOK ME FOREVER TO FIND IT MYSELF, AND YOUR RIGHT

THIS IS MORE FOR ME! - KARI MOM OF BRE- NO-CF, DAVID-J CF?-CF CARRIER

[Guest guest]

Welcome to the list Kari. You will find this to be a wonderful place for

support. :-)

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

In a message dated 3/15/2003 3:19:19 AM Central Standard Time, JKDORA@...

writes:

> KARI

My girls were diagnosed when they were 6 and 1 and I can tell you there mind

is just fine! Deb A