Adult Sibling Not Wanting to be Tested

veggiebin

New member
My nineteen year old was diagnosed with Cystic Fibrosis Related Disease in January, has two mutations in trans on the CFTR gene. My 23 year old daughter has been worried about her weight for years, can't reach 110 lbs. She is worried that she has an eating disorder, and has been seeking counseling for that. However, behaviorally she does not fit the profile for such a problem. I'm worried that she may have cf and is not able to absorb her food properly, but she won't be tested.

Has anyone else been in this situation? Have any suggestions of how to handle it?
 

kenna2

Member
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?

As to not wanting to be tested, I think it's important to stress that the only way for her to get some answers about her weight issues is to get tested to rule things out. Tell her if she does get tested, you'll shut up about it. I love when I can make my parents shut up lol. If she's not willing to listen; talk to her doctor or therapist and express your concern. My parents have done this and have accompanied me to a couple of therapy sessions with my therapist to hash things out expressing their concerns. Simply tell her that it would make you feel better if she got tested for CF. The recent diagnosis of your other daughter has made you want to be proactive. It's also recommended that siblings of CF patients get tested for it because if they're carriers of the gene, they're going to want to know when it comes to family planning.
 
Last edited:

veggiebin

New member
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!
 

kenna2

Member
Check and see what kind of medication she is on for her mood and possibly if she's on anything to treat her insomnia, some of them have a weight loss side effect. I suffer from anxiety and depression. For the longest time I couldn't get my weight over 116. My doctor finally figured that out, switched me over to a med called Remeron, and now I'm up to almost 130. It could be something as easy as that.

I would also agree with you that she does need tested regardless. The fact that she's not been sick is a good thing. Her past symptoms don't necessarily reflect just a CF gut. A friend of mine doesn't have CF but does have weight gain issues and chronic bouts of constipation. I can't remember off the top of my head if she has a specific diagnosis or not. I think however with the recent diagnosis of CF that your daughter might be in denial about the fact that she could possibly have it.

I'm also wondering if she is struggling to gain weight, why she isn't actively seeking the answer to it and just settling on a "eating disorder" diagnosis? I understand age and fear has a lot to do with it. I'm wondering if maybe it's time to put your foot down and make the necessary appointments for her. Your excuse could be that eating disorders can do damage to the body and you/ she needs to make sure everything is still in a normal healthy range. I'm wondering if you can get these tests done under the guise of "we're treating you for your eating disorder".
 

veggiebin

New member
Kenna2 -

Thank you for all of that. I did look at the med that she was given for the insomnia and it could have the weight loss effect. She was having weight issues before being on it, but that may have sent her over the edge, as she didn't have any tolerance with her being so twiggy to begin with.

I like the idea of getting her to the doc with the idea that we are treating the eating disorder. You are right that things are probably out of whack metabolically and she should see the family doctor.

If she doesn't have the CF mutations I would be relieved, but until she's tested we will never know.

Thanks again for the response and advice, it's greatly appreciated!
 
Top