, Pulmozyme side effects, , Question for those who have CF

January 13, 2001

I am soooooo happy for you and Meagan, hope it continues for a long time

to come.

Ainslie has been using Pulmozyme for the past 6 months and we love it.

Here in Australia to be able to use pulmozyme you must pass a clinical

trial, well, the first time Ainslie trialled it she failed the test but

for the month she had eaten more was happier and in her own words " felt

stronger " . This was enough for me to push every 6 months to trial it

again, she succeeded on the 4th time. The only bad side effects that we

have seen is a raspy voice, the good side effects are no chest

infections (even when viral stuff has effected her), weight and height

gain, less days off school.

Sydney was wonderful, yes we had to give salt supplements as it had been

35 C+ the week before we arrived and for the first few days we were

there. Xmas day we spent in my cousins pool. Here in Tassie we do get

some warm weather but at present there is still some cool days. On the

whole we only give the salt supplements when it is say above 30 C for a

day or so. Tassie is soley reliant on our own power source te " hydro "

and at present there are plans underway to create the BassLink Project

to link Tassie with the mainland to help ease the power burden.

I saw on the news tonight that you are set to have a 43 C day tomorrow,

glad we are not there. Nigel will be bringing the children over before

Xmas when he returns home in June, we don't tend to come in summer, the

kids are really not used to the heat.

My question is - First thing in the morning do you feel hungry? The

only time that I have a REAL battle getting Ainslie to eat is the

morning. Do you feel odd, or hungry, not interested in food?

Terri mum to Ainslie 8 wcf and Connor 4 nocf

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