and Jen - re. diagnosing CF

[Guest guest]

Thankyou both for replying so quickly!

Amy has been tested for ciliary disorder and immunological

deficiencies - both negative. My other daughter has asthma and I know

she was tested for alpha1 antitripsen deficiency which was negative.I

really can't remember if Amy had that test too - I would imagine so.

Bothmy girls were referred to the Royal Brompton hospital in London

because of there " uncontrolled asthma " .

The Gene test has been sent away to another Lab for testing- Amy is

havin g an extended test which her Docs say will look at all the

known mutations and may take a LONG time to get back. They don't feel

she has CF and its really because I asked about sweat test negative

CF that they said they could do the test.

I don't know what bugs she has grown. Back then I just took the

antibiotics and didn't ask any more! I'm more assertive now - you

have to be don't you.

I am rather concerned about her falling FEV1 - although the Dr said

it is probably Amy starting her puberty growth spurt and her lungs

not growing as fast as the rest of her. He thinks it will even out as

she getds older.

Best wishes,

.