Snowball Appointments

“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.

13 thoughts on “Snowball Appointments

  1. Gentle hugs and good thoughts.
    I hope the news, when all is said and done, isn’t horrible.
    I can completely understand though. Amandya, since she started having seizures in January) has decided that she is completely DONE with doctors. Between PCP, Neruo, blood work, having been in Dell Children’s Hospital, and more recently the psychologist… she won’t even tell me when she gets sick for fear I will take her to the doctor. I’m scared to death she is going to get something like the swine flu she had last year and she will wait entirely too long to tell me about it because she doesn’t want to go to the doctor over it.

  2. Sooo frustrating!! I feel your daughters anguish and frustration seeing doctor after doctor reminds me of myself. Way to be a good mama and not give up!!

    Thanks again for your blog… I’ve been following it regularly even though I don’t always post.

  3. WS, Thanks for sharing matters of your heart with your readers (cyberfriends?).
    The love in your heart, as you know, is one of the primary therapies of choice for your daughter.
    You’ve done well to connect her to a physician (or two) with whom you have a trusting relationship to help coordinate the next steps. Your knowledge of the healthcare system from your readings and writings will enhance your excursion through the system and this situation. Now the physicians can have all the negative thoughts and you don’t have to, allowing your daughter to get more of you. Best wishes for a rapid clarification and resolution for you and your daughter.

  4. My heart broke when I read about your daughter’s suffering. I’m praying that she gets better quickly…both physically and emotionally!

  5. Oh WarmSocks, you are all in my heart and prayers. It’s one thing for us to deal with doctors, needles and x-rays and have all of it lead to nothing conclusive. It’s another thing entirely to know our children are suffering and understandably fed up with the process of trying to figure out why our bodies are misbehaving. I’m so sorry, mama. My oldest son (12) and I have recently begun a process of our own. He has been complaining of fatigue and numbness in his hand and intense lower back pan. And this kid is not a complainer by any means. Not too long ago he told me his ear hurt. I asked him how long it had been bothering him and he said a month! A month?!?! After seeing his pediatrician, we’ve been referred to a pediatric rheumatologist and neurologist. He is frustrated with me for pursuing the matter. But like you, I’m not taking this lightly–especially considering what is going on with my own body.

    Please keep us posted. My heart is heavy for your family.

  6. Sending you warm hugs and a hope that you can continue to be strong for your daughter. You’re right. You HAVE to find out what’s wrong. Those symptoms need attention, but all of us feel her frustration. Thank you for sharing and keeping us posted.

  7. Sorry you they (docs) haven’t been able to figure out just what is going on with your daughter. I was recently referred to a neurologist and it took me a month to break down and make the appointment and I’m an adult. I can certainly understand your daughter’s resistance to yet another appointment.
    Glad you are actively pursuing it and hope you and she get an answer soon. So hard to watch your kids suffer. Hang in there.

  8. How frustrating that your FP and rheumatologist couldn’t come up with a diagnosis. But I’m glad they made the referral, even though I completely understand and empathize with your daughter’s aggravation. I hope the next doc will have an answer, and that something can be done very soon to help ease her pain. It’s just awful to have your child hurting and be unable to do anything about it … My thoughts are with you and your family, Socks. Sending warmth, comfort and patience your way.

  9. How frustrating for her and for you. So often tests are a matter of elimination and are not really a good diagnosis tool. I can empathize and am sending you both warm thoughts and cyberhugs.

  10. I am so sorry you (and she) are going through this. How frustrating. I can’t imagine being a kid and having to go through the tons of doctors thing. It makes me mad enough to have to do it myself, and I am a grown up and am supposed to be more patient. I am thinking good thoughts for you all!

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