Recent content by Gnome

We are also hoping for the best. Our mutations are W1206X and df508.

Funny in moving from Canada to the Netherlands I found the suggested way to clean nebulizers different. In Canada they suggest the dishwasher. In the Netherlands they gave me several 1 litre bottles of 70% isopropyl alcohol (rubbing alcohol). Nothing wrong with either way just different.

My son didn't transition from mask to mouthpiece until he was 7/8 years old. We were told at the time that the mouthpiece does absorb more medicine and at age 7 the transition was easy. We weren't having any serious health issues with CF where optimum medicine intake was essential.

Cold air may be bad but usually it is dry or moist air that causes more problems depending on the CFer. Usually if it is really cold people stay inside and are lucky to be outside for a minute. Which is how long it takes to get from the car to the house.

Although it is disappointing I can understand why Disney did this. There was just too much abuse. The time we went to Disneyland we just stood in line with everybody else and that was with a high functioning autistic child as well as CF kids. We were fine but it wasn't hot or anything and we...

We use the Pep mask here and it almost never used alone. It is almost always used with manual percussions on the chest. We have no experience with the vest so I can't comment. My son's FEV's are high but he is only 7 years old. I would say if you don't have a Pep mask get one as they are...

thanks for your replies

We are considering moving to Houston for work for a few years. We are wondering what Houston's hospitals and CF Clinics are like. We are currently in Calgary, Alberta Canada. We have two kids with CF (age 7 and 4) and so far their health has been excellent. Calgary has a cool dry climate...

We camp in a newer tent trailer. It has power and we do nebulizer treatments and everything just like at home. We just don't worry about dust and smoke because it is fairly infrequent exposure.

We are Canadian and we have set up a Disabilty Fund for our kids. It is much like the RRSP's (which are 401's for US people) and is a tax sheltered fund which the parent's contribute to until needed.

My kids (age 4 and 7) have both been given a bigger enzyme. My daughter who is 4 years old rejects it completely. Any ideas on how to get my daughter to take the enzyme. It is a very big leap I think. Did anybody else have trouble with this and how did you deal with it?

It isvery quiet with that drug. Have heard nothing formally from the company. However, the company that makes the drug is a private non traded company so they may do things a little different.

It isvery quiet with that drug. Have heard nothing formally from the company. However, the company that makes the drug is a private non traded company so they may do things a little different.

I have always read the posts about your son over the years and this makes me sad. I always gathered your son's health was never good but it still doesn't seem fair. Many thoughts and conforts in this difficult time.

I have always read the posts about your son over the years and this makes me sad. I always gathered your son's health was never good but it still doesn't seem fair. Many thoughts and conforts in this difficult time.