enzyme advice before clinic visit

February 14, 2004

Hi All,

I have a question, before we go to clinic and I start pushing the

issue with our doc.

I am certain that I have understood from many of you and from books

I've read that if a person's enzymes are right for them then the gas

and bm's won't smell as bad. I have been under the impression that if

Adam gets the right dosage of enzymes his diapers shouldn't be worse

than a " normal " childs. Not to mention he'll be 2 in two weeks and the

diapers have all been soft now for months (the last hard one I

remember was last summer right after we went to the current dose of

enzymes). I am looking for confirmation of my beliefs/understandings.

I especially ask this because when I bring up the smelly diapers to

the GI doc he just laughs and says that's normal for a cf child. That

bothers me, so I want to hear from you guys if I'm right before I

really start having it out with him at our next visit. I know there

was a discussion earlier (about a month ago or so on this list) about

soft diapers instead of hard ones and someone sent a list of how

enzymes could be causing that (too many, too little, etc). I've

printed that out and will take that with me to the appt. (I also

forwarded it to him with a request to look into other enzymes but have

not recieved any reply -- We get our meds through the military and it

seems that anything specifically for CF they have to special order and

it takes a while. I am currently having to crush an ADEKs tablet daily

because they can't get in the liquid form.)

I'm sorry if I've rambled, and I'm sorry I had to bring up diapers,

etc. But I would like to hear from other parents that my expectations

are on mark before I get pushy with the doc. (Getting pushy is not a

problem for me, I just like to have my facts in line -- I am a

scientist you know.)

Thanks for any replies,

Crystal

mom to Adam almost2yo cf, le 4yo nocf.

February 14, 2004

Here I go again--beware! My own cf child's poops were vastly im

proved, by high consumption of protein with appropriate enzyme

dose, and I find that, though I no longer wear diapers, nor does my

adult " kid, " that the same is true of me. n, just typing out

loud again--love and luck to you, Crystal and to your child wcf.