My first thought is a bunch of questions. Does she suffer from any sort of GI related symptoms besides being under weight (like loose stools, upset stomach, constipation)? Is she on any type of anxiety med? Is her weight stable or does it fluctuate? How long has she received counseling? .....
Kenna2 -
Thank you for your reply!
As she is an adult, some of these questions are hard to answer, since she is more private than when she was younger, and she has been very distant lately, especially since I have asked her to be tested. She got very defensive because she wants this to be a "her" thing and not a "her sister" thing. Her sister has been sick for quite a while, and since she had her gall bladder removed, I have been on a hunt for the cause of the illness. So, she thinks that I am a little crazy, and I probably am. But, we finally found the two mutations on the CF gene.
When she was in kindergarten, she was having some major problems with "tummy issues", and I thought she was having diarrhea. The pediatrician however told me that she was constipated. Now that I've researched CF a bit, I believe that she could have had a partial blockage which would possibly present itself that way. We improved her eating habits and it alleviated enough that we haven't revisited it with a doctor, although she has battled with "constipation" throughout the years. She moved out last August, and her symptoms at that time were mainly insomnia and some occasional depression. Her stools also were foul smelling. She does not have the extreme gastro problems her sister has, and her lungs seem fine - even though she has been diagnosed with asthma by our gp.
She was mostly fine when she moved out, but after a few months, she was having anxiety/panic attacks and she had gotten really thin. She's always barely been on the growth chart for weight, but she was getting really boney. So when she mentioned that she felt like she needed the counseling, I agreed. But, this was also before we knew about her sister. So, she started going to an eating disorder recovery place in January. She hasn't really talked with us much since February. And, I did what you suggested, talking to her counselor, pretty much to let her know about the diagnosis, in case the therapy didn't work for her. Of course, the counselor had never heard of CF, kind of crazy being that they are in the undernourishment business. My daughter feels that I am not supportive and that I only wanted to convince the counselor that she does not have an eating disorder. But, she does not have any of the behaviors, and the diagnosis codes only say "eating disorder - other" - since she does not fall into any of the other categories. And her sister was diagnosed with CF...ugh! Like you said, she could prove it's not by being tested, but she is operating on a young, malnourished brain, and reasoning is not her strong point.
As far as her weight being stable or fluctuating, I really have no idea. She is older now, went through college (while living at home) and really hasn't had need to go to the doctor much - other than for the insomnia, which has really plagued her throughout school. We didn't own a scale until recently, and although I'm sure she has paid attention to that at the gym and stuff, I really don't know other than she's been trying to gain weight for several years.
So, that gives you more background. Thank you again for your suggestions!