questions

[Guest guest]

Ok everyone, I hope you can help. I have one pretty easy question.

When looking on the CFF website I noticed under the care centers was

of course LA Childrens and then it showed an " affiliate " in Ventura.

Dr Landon ( I think the first name was ) What is an

affiliate. Could he treat Wyatt or would we still need to go to

Clinic in LA? Ventura is a hop/skip and a jump away from the base so

that would be great. Anyways, maybe someone will know.

Second and this is a little harder. Wyatt was born and had meconium

illeus. His docs sent his blood to Oakland Children's for a genetic

test just looking at 10 mutations. Delta F508 being one of them. It

states he was negative for all 10 mutations. Then it says " His

Haplotypes using XV2c and KM19 linked markers are CC. Only 1/1040 CF

patients w/out a Delta F508 mutation would have this haplotype. About

5% of cystic fibrosis patients have no Delta F508 deletion. However,

these results do not rule out CF and sweat chloride testing will be

indicated. "

Can anyone explain this to me in layman's terms. Also, the second

part of this is...LA Children's has told me he was retested for

mutations and he came out double Delta F508. I have never seen

paperwork on this it's just what they told me over the phone. When I

came to Hawaii my new doc was looking for all of this paperwork

because our insurance company needs it and could find nothing on his

sweat test or his gene testing. (HIs sweat test was done at 4mo old

and was positive by the way) So I called LA. They told me over the

phone he was double delta and said they would fax the paperwork to my

doc. THey never did and then said I had to do all of these things for

them to release them. (I was under the impression all of his records

would go with us when we moved-guess I was wrong)

so I'm confused about why his initial tests would say negative

Delta F508 and then a second test would say yes he is double Delta

F508. Does this sound right? I'm going to call LA Children's tomorrow

and try to get this faxed to us here. Otherwise I'm thinking he needs

to be tested again to make sure? I don't know.It's been a long

confusing day. I hate not going to one place for everything because

now my son's records are missing all sorts of documents. Thanks if

anyone can help! Christy mom of Wyatt 7wcf and Hunter 2.5wocf