“You need to cancel that appointment. There’s no reason to go. I told you the last person wouldn’t be able to find anything, and I was right. This doctor won’t be able to figure out what’s wrong, either. It’s a waste of time!”
Have I mentioned that my normally-polite daughter is less than enthusiastic about my wanting to figure out why she never feels well?
If there were nothing to find, I’d be happy. But there’s something wrong and the sooner it’s figured out, the sooner she’ll feel better. This has gone on for a few years, and it breaks my heart to see her like this. The other kids want to go to the fair, but she doesn’t think she can walk around all day. She’s been talking of selling her horse because she never has the energy to do anything. We’ve got to figure out what’s wrong!
A couple years ago I mentioned to our doctor that this child is always tired. No obvious cause, blood draw with normal results, so we didn’t pursue it. Then her hips started hurting. Last year, x-rays showed nothing specific, so she learned to live with it (and not tell me so that I wouldn’t take her back to the doctor).
When she started vomiting from the pain, she couldn’t hide it anymore, and back to the doctor we went. A cortisone injection helped, and while I was happy to have her feeling better, I’m a little afraid of the implications when steroids are beneficial. Lab work and more lab work, on someone who hates needles, and she was getting discouraged about “all these appointments,” and got mad that she had a referral to a different doctor.
With her referral to see my rheumatologist came massive amounts of paperwork. I’ve had plenty of chance to talk more with my daughter. I don’t think she has RA. There’s no joint swelling. There are, however, other symptoms that I’ve pried out of the kid so we could work together to fill out her paperwork. I told her, “The more accurately you’re able to describe what’s going on, the more chances there are that the doctor can figure out the problem and find a solution.”
It was distressing to learn that she had many more symptoms that she hadn’t been telling us about. In addition to the fatigue, fevers and loss of appetite we’d noticed, she also marked off:
- dizziness
- headaches
- pain in hands/feet
- painful eyes
- feels like something in eyes
- difficulty swallowing
- easy bruising
- chest pain
- shortness of breath
- low back pain
- joint pain (hips, ankles, knees, neck, wrists, shoulders)
How depressing. No wonder she never feels like doing anything!
We finally got to see the rheumatologist, who said it’s not RA (I never thought it was) and not SLE (not sure how that was ruled out). Despite what one hears about doctors never talking to one another, the rheumatologist left the exam room and phoned our family physician to discuss my daughter. Together they decided what to do next.
After stopping at the lab for a blood draw, and radiology for x-rays, we dropped by our FP’s office to pick up the written referral to a pediatric orthopedist.
My daughter is livid. Every doctor’s appointment leads to extra tests and another doctor’s appointment. Just like a snowball rolling downhill, it keeps getting bigger and bigger, with more appointments and more tests.
She’d be happy to never see another doctor again, but I’ll be dragging her to yet another appointment, where (she is convinced) they’ll order even more tests that won’t help her.
I’m concerned that there’s a physical problem, but at this point I’m even more concerned about her hopelessness.
And on that cheery note, I bid you a good weekend.
