Tip

[Guest guest]

Hi my tip is to research all of the med's your doctor prescribes your

children. I have found through research that 2 drugs caused more harm

than good for my stepdaughter. I also advise everyone to keep track

of enzymes and change in weight. We assume the doctor will tell us

when to up the dosage but ours never did. She was on the same dosage

of enzymes through a major weight gain. Not until I asked did they

ever mention upping the dosage. There is so much to keep track of

that I write my questions down between the 4 times a year clinic

visits and then ask them all at once. Since I have met my

stepdaughter I have started a huge binder where I keep track of all

of her meds (when prescribed, when stopped)etc. I also keep track of

all the info from any doctor visit and the inserts that come with the

prescriptions. I track all of her hospitalizations and misc. doctor

appointments and anything else I think might be helpful. I track

everything from a stomach ache to what antibiotics don't seem to

work. Since we share my stepdaughter I track the amount of

prescriptions she should have at any one time (through experience I

know that she has missed up to 30 dosages of Nexium over a two month

period). I now order all the meds through CF Pharmacy so that I know

exactly how much she has at any one time and when they should be

gone. I know that I may be a little over the top but it's all in the

best interest of her health and I think anything I can do to try and

keep on top of things is worth the paranoid pains I take.

Becky (stepmom to 9 year old w/cf)