Posted 7/17/2015 12:07 PM (GMT -7)
Yep, I heard you loud and clear. I was the same way as a kid, had to eat 5000-7000 calories a day to keep weight on and the only way was add quite a bit of junk food. So I ate that way until college and then figured the whole "fat is a problem for me" issue and now I have trouble keeping weight OFF. (I have always tested PI) I know this is NOT typical of DD508, however, I have heard of a few others like me out there.
I definitely agree that folks need to keep lines of communication open with their docs at all times, but I have discovered that the GOOD docs are open to learning from their patients as well. Mine is downright fascinated with a ddf508 who is PI, doesnt take enzymes, and works hard to keep her weight from ballooning.
There are some really scary folks out there though, with regard to how they will experiment with their childrens health and life.........I have two daughters, I just couldnt imagine. Maybe its total desperation? I do know some docs simply just dont listen when the patient tells them the meds are either not working or making them feel horrible. Some dont seem to care in the slightest as long as protocol is followed and their butt is covered. So people do have to think for themselves too. And I have had a very well-known doc ask me if I wanted to try some cannabis pills, see if they would help with the asthma and pain. Wasnt ready to go there yet :)