RE: About to have sweat test in UK

[Guest guest]

Hi Jeannie

I don't know if you have had your appointment through for the sweat test yet

- s (9 3/4)original appointment was for 10 days later but his

consultant rang up the lab and got them to do it the same evening. We got

the results (positive) back first thing the next morning. With Jake (2

4/12) he had his sweat test at 10am and they rang about 1pm with the results

(negative) so they can do it really quickly.

was in hospital when he was 6 weeks (failure to thrive) they failed

to diagnose CF then but he was put on a special formula (PREJUMIN) - He did

very well on this formula (considering) although he too was constantly

hungry and had lots of " poos " - if he was on enzimes as well he would of

done much better. His chest problems started when he was about 4 1/2.

Although not bad until this past summer - he got an infection that wouldn't

go away.

If you haven't yet received the appointment why don't you give the hospital

a ring and get them to chase it up for you - I really don't think it's fair

to expect you to wait.

I hope the sweat test is negative - but if not at least he will be able to

have all the correct treatments to keep him as healthy as possible. Since

s diagnosis in August he has grown nearly 5cms & is healthier than he

has ever been.

Hope work is going okay. I find it helps to keep my mind of things (when

I'm not using works e-mail system - I don't have e-mail at home at the

moment).

Take care

Sheila

& Jake's Mum

About to have sweat test in UK

My 5 month old son is to have a 'sweat test' for cystic fibrosis. My

question is..

Could the fact that he is breastfed and taking a low dose antibiotic

mean that symptoms he'd have had otherwise, are absent? e.g.

respiritory infections, more extreme weight probs. These are his

symptoms:

He has never lost weight, but his weight gain slowed at 8 weeks after

a urine infection for which he is still taking antibiotics (the

infection is gone but he must continue on a low dose until his

kidneys are tested - I don't think this could be CF related - correct

me if I'm wrong). His weight is increasing but is not recovering to

it's original level as expected.

He had 'breastfeeding jaundice' i.e. prolongued to about 6/7 weeks.

I think he feeds a lot (at least 4 times in the night and lots during

the day) and he is taking solids (baby rice and veg) v well. He does

taste a little salty though I may be exaggerating this - is some

level of saltiness normal? .. I only checked after the test was

suggested and reading that it was a symptom.

He also poos quite frequently - though again I'm not really sure

what's normal in that respect.

There's no family history that we're aware of.

My immediate concern is that I am due to return to work (full time)

on monday (tomorrow) and therefore the level of breastfeeding will

decrease. I don't want to do this if it could affect his health.

Since posting this on another list (cystic-l) I have decided to go to

work and express milk.

Also, does anyone know how long I might expect to wait for this test

(UK NHS)?

Any opinions or suggestions very much appreciated.

Jeannie.

's mum in Newcastle upon Tyne, UK.

jeanniebrady@...

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