My 2 cents as the fellow parent of a 15 yo (well he will be in 6 days) with CD.
1. A doctor who decides that your child is fine based on labs from "a few months ago" is not, in my opinion, making an informed clinical decision based on assessment of the entire clinical picture. At the minimum, my son's GI would order new labs including ferritin or an iron transport study to identify possible (in a girl's case extremely possible) anemia or low iron stores. It is likely he would also recommend that my child be evaluated by his pediatrician (our GI is 100 miles away at a major Pediatric IBD Center).
2. While some fatigue is normal even when he is in remission, unless there are other stressors like family stressors, anemia (including low ferritin despite normal H&H and RBC), other physical illness like asthma, etc, my son is not severely fatigued.
3. She is 15. She is a young woman. Rather than you taking on the entire load of deciding when she's sick, how sick she is, whether she needs to see a doctor, etc. you must take a step back and put some if not all of that on her. It's tough - don't I know it. But it is the developmentally appropriate thing for you to do. It will not benefit either of you (in my opinion) to treat her like a younger child for whom you do have to make such decisions.
This is not meant as criticism of either of you. Parenting a teen with a chronic illness is like walking a tightrope and comes with the same kind of anxiety. which leads to my next thought.
4. Talk therapy can be very helpful when dealing with hypervigilance (i.e. constantly checking to see how she is feeling, reacting to any and all physical symptoms) by you or by her. Therapy is very likely to benefit you and your spouse and your daughter although you should have separate therapists.
5. I encourage you to return to responding to physical symptoms like fatigue or belly aches the way you did before your daughter was diagnosed when it seems appropriate to you. For example, before if she complained of a stomach ache you probably observed whether she was throwing up, etc but if it didn't seem to you like it was something to worry about
then consider using that same standard now.
6. If she is only recently (within the past 2 years) diagnosed, know that it is completely normal to be going through the process of figuring this stuff out. If you feel that her doctors have done an appropriate clinical assessment I would ask them to talk to both of you about
what symptoms to be concerned about
, how long you should wait before bringing them to the doctor, etc. Then use their guidelines if you feel they are reasonable.
7. Mother's intuition is important. Listen to it. But when it's mostly anxiety/worry over maybe's and possible disaster that is not actually happening then you may need to consult a friend/family member like your spouse to get their perspective. It can help to have someone who has a little distance but knowledge about
the situation as a sounding board.
8. When you consistently feel that your child is sicker than they should be, it can be helpful to document it by keeping a daily record. When they're 15 the responsibility for this should be largely on the teen - with lots of support from you like reminders before bed to make a note of how bad the fatigue was, other sx, etc. Then when you call the doctor you have something concrete to report. She's fatigued at 8 on a 10 point scale 5 days out of 7 is very different than she is fatigued at 3 on a 10 point scale 3 days out of 7.
I second a lot of the other advice you have gotten.
Hang in there. It will get better.
PS: Has she been assessed for celiac recently? This can be done by labs and can occur at any time.
Drink the protein beverages very, very cold from a covered cup with a straw. Use the same flavor in small amounts (sips) for several days before giving up on a flavor or product.
son now 14 1/2, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease
Post Edited (rlsnights) : 12/14/2010 11:35:16 AM (GMT-7)