RE: Re: mutations and Welcome

[Guest guest]

Helllo:

Is gene testing something a child with CF should have done? When should

siblings be tested to see if they are carriers?

I also want to thank everyone who welcomed me to the group. Being new to CF,

it has been very informative to read the postings.

I feel like a " bad Mother " that in retrospect I should have put two and two

together, but obviously CF was the farthest thing from my mind. I think my

son is adapting well and feels better with the treatment. The first thing

the Social worker at the CF clinic said was " at least you have a name for

it " . I think the biggest shock is to find out now, not when a doctor should

have told us earlier.

We are fortunate to have a good CF clinic at the Children's Hospital of the

Kings Daughters in Norfolk VA. When do you switch to an adult clinic?

Debbie

16 year old cf 19 year old nocf

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[Guest guest]

When my daughter wcf was diagnosed they identified the genes. She had two

copies of Delta F508. At the same time they did a sweat test on my oldest

daughter and also the gene testing and determined that she had one copy of

the Delta F508 gene. That was 13 years ago. My oldest daughter just

recently got married and her husband was tested to make sure he didn't have

any of the known gene's and he has tested negative. So we are hoping that

when they have children, she will not pass on the gene. You are never a bad

mother, you just didn't have all the information. I have felt that way many

times but reading posts from this group has given me lots of great

information.

Tina W., mother of Steph 18yo wcf

RE: Re: mutations and Welcome

Helllo:

Is gene testing something a child with CF should have done? When should

siblings be tested to see if they are carriers?

I also want to thank everyone who welcomed me to the group. Being new to CF,

it has been very informative to read the postings.

I feel like a " bad Mother " that in retrospect I should have put two and two

together, but obviously CF was the farthest thing from my mind. I think my

son is adapting well and feels better with the treatment. The first thing

the Social worker at the CF clinic said was " at least you have a name for

it " . I think the biggest shock is to find out now, not when a doctor should

have told us earlier.

We are fortunate to have a good CF clinic at the Children's Hospital of the

Kings Daughters in Norfolk VA. When do you switch to an adult clinic?

Debbie

16 year old cf 19 year old nocf

_________________________________________________________________

Set yourself up for fun at home! Get tips on home entertainment equipment,

video game reviews, and more here.

http://special.msn.com/home/homeent.armx

<http://special.msn.com/home/homeent.armx>

[Guest guest]

You wrote,

When do you switch to an adult clinic?

Debbie

16 year old cf 19 year old nocf

Hi, here in Southern Ca I know of two CF clinics, one we used to go to and the

one we go to now. I mean I know of other clinics but I don't know what their

protocol is. The children's hospital we used to go to (CHOC) switches the kids

to adults at 18. After they are 18 they can't stay inpatient at CHOC, they must

go to the adult hospital next door (St. ph's) I have heard a few pwcf who

have switched to the clinic we go to now because they didn't like the care at

St. ph's. We go to Children's in Long Beach. Here they let the

child/young adult decide when they want to switch but I think you pretty much

have to by 21. although I did hear about a young man over 21 who has been a

frequent flier for many years and I heard he refused to go to the adults floor.

He begged, pleaded or whatever it took to get him back on peds. may be

the same way. She isn't admitted so frequently so I don't know. She had the

choice this last admission to go to adults or peds and she picked peds. its more

fun. But the adults all get private rooms and the kids don't. had an

adorable 4 year old roommate this past time and she had a lot of fun playing

with her. Besides everyone kept thinking she was 13 so she didn't feel out of

place. what I guess I am trying to say is clinics differ but probably most

places they transition by 21.

love,

M

mom of Nick age 21 nocf and age 19 wcf