When It Works

Continued…

If a doctor’s treatment plan doesn’t work, it’s appropriate to go back and ask What Else Could It Be?

A few years ago, my daughter suffered from a severe lack of energy.  Given her age, I assumed that she was anemic and bought a bottle of iron pills.  That didn’t help, so eventually I took my daughter to our doctor, concerned that she was exhausted all.the.time.  He asked her, “How much sleep are you getting?  What time do you go to bed at night?  What time do you wake up in the morning?”  Knowing the hours she keeps, I thought our doctor was crazy.  If she wasn’t getting enough sleep, I’d address that at home instead of taking the time and money to drag her into the doctor’s office.  But then I realized he was looking first at the most common causes of fatigue.  It makes sense to look at the obvious things first.

He asked a few more questions then ordered some labs.  Everything came back normal, and we never gave him any indication that the problem was ongoing.  He probably thought that the problem had resolved itself.  My daughter assumed that since the doctor didn’t find anything wrong initially, there was nothing that could be done and she had to live with it.

I know that sounds like When It Didn’t Work.  We should have gone back to see the doctor again.  And kept going back until the problem was figured out.  Until you recover, returning to the doctor to find a solution is an endless loop:

It does work, though.  Sometimes it just takes a while.

My daughter started having weird aches and pains, and spent a lot of time in her bedroom.  I chalked some of it up to adolescence, not realizing that she was hiding so that I wouldn’t realize how much pain she was in.

One day a sibling came and found me to report that daughter was sick.  Sick, as in vomiting from the pain in her hips.  Since my first RA symptoms were fatigue and hip pain, I was more than a little bit concerned about my daughter exhibiting some of the same symptoms.  Back to the doctor we went, but ibuprofen, heat, and a couple hours of rest had worked their magic and the doctor could not determine what the problem had been.  X-rays didn’t turn up anything helpful.

My daughter had now been to the doctor twice, and gotten no ideas of what to do so she could feel better.  As far as she was concerned, there was no point in ever going back again.  Occasionally I’d ask if the pain was bad enough to see a doctor, but she always said, “No.  It wouldn’t do any good.”  And I really wanted to believe that she was okay, and it wasn’t that bad – that I was just being paranoid – so we pretended that everything was okay.

Then a few weeks ago, she was sick again – this time with both hips hurting.  This time I didn’t ask.  I’m the mom, not the friend.  I called our family physician’s office and made an appointment.  The doctor could see his prior notes, that this is now a long-standing problem.  It’s not resolving on its own.

The process worked.   I explained that we’d been in about this before.  I asked, “What else could it be?”   Returning to the same doctor, giving him the opportunity to consider other options, worked.

Our doctor asked more questions, did another exam, read back through his notes from last time, and suggested that he’d like to refer daughter to an orthopedist to figure out what’s going on.  I didn’t need him to be the person to find the answer.  I needed him to listen, to realize that this isn’t a small issue, and to help us find a solution.  That’s what happened.

In the middle of that appointment, the doctor left the exam room to get supplies to give my daughter her first steroid injection.  (Yay for kenalog!  It works so well.)  The paper he gave me when he returned with the shot wasn’t the referral I was expecting.  It was a lab order.  He wanted some labwork done before writing a referral.

This child hates needles.  I read the lab slip and my stomach sank.  My suspicions aren’t baseless.  ANA/RF/CCP - he’s not set on an orthopedist.  I asked our doctor if he’d be willing to write, “copy to patient” on the lab order form (less paperwork on my end, less paperwork for the lab, and I get the report faster).

Everything was negative.  I like having the lab send me a copy of the test results.  When results are ready, the lab faxes a report to the doctor and drops my copy in the snail-mail.  By the time I have my report, the doctor has had a chance to look at the results and decide what to do.  Time for that referral.  I hoped an orthopedist would figure this out.

I waited.  And waited.  Finally, feeling like a mother bear trying to protect her cubs, I phoned our doctor’s office.  With restraint, I left a message with the receptionist.  “Dr. said that he’d have a referral for us after daughter’s lab results are back.  Can I please get that referral so I can make her appointment and get this figured out?”

One of the many things I like about my PCP’s office is that phone calls are always returned.  After a while the nurse called to ask who the referral was supposed to be for.  Given that there was a name on the phone message, I thought that was a very odd question.  I explained that the steroid injection had helped with daughter’s hip pain (on the side of the shot, the other side still hurt).  But the kid had a hot pad on her knee, and her ankle hurt, too.  She was talking about selling her horse because she never has the energy to go riding.  I needed to figure out what’s going on.

The nurse said she’d talk to the doctor and call me back.

No call.  That was only the second time in fifteen years we haven’t gotten an expected call from that doctor’s office.

Meantime, I was thinking.  I am not a doctor.  I have no medical training at all.  This could be anything, and our doctor is certainly in a better position to evaluate symptoms than I am.  But:

  • bilateral joint pain
  • multiple joint involvement
  • overwhelming fatigue
  • feels sick all the time
  • Raynauds

The lab results were negative, but given the symptoms, I wasn’t finding that reassuring.  Especially in pediatrics.  Why would this be a referral to an orthopedist instead of a rheumatologist?  Not that I want this diagnosis.  Far from it.  But my child is sick and if it takes a sucky diagnosis to get treatment so that she has a life again, then we need to get on with it and not drag our feet any more, fearful of what we might learn.  It’s my fault I let things go this long, but I’ve moved away from that Egyptian river.

I like our doctor.  A lot.  If the nurse hadn’t called back, there was sure to be a good reason.  And really, we waited a few years to follow up; a couple more days wouldn’t be the end of the world – despite my anxiety.

Finally the call came late afternoon on the next day.  Not as expected, though.  Private caller…  The doctor himself phoned.  On his day off.

He’d not picked up on the long-term fatigue accompanying my daughter’s joint pain.  Although he’d initially suggested a referral to an orthopod, with the combination of symptoms, despite her lab results being negative, he wants my daughter to see my rheumatologist.

I’m scared.  Scared she has an autoimmune disease, that this is something I’m responsible for.  Scared that instead her immune system is working perfectly and we’ll be on an endless search for answers, going from one doctor to the next.

But right now, it seems that returning to the doctor worked.  He gave it some extra thought and has a plan for getting some answers.  I love it when things work the way they’re supposed to work.

And I love having a doctor who listens and will put two and two together.
Even if I’d rather 2+2=3

About these ads

9 thoughts on “When It Works

  1. Socks: This is definitely worrisom. Your daughter is so lucky to have you as a mom who understands so much about the process and autoimmune disease. Whatever the outcome she’ll have you to help guide her through the days ahead. I know that none of this is what you want, but who more qualified to lead this fight? Please keep us posted and know that we’re all here sending comforting thoughts your way.

  2. Oh Socks, hope you get an answer soon, so you can at least address her symptoms… As Carla says, she’s so lucky to have a mum like you to help her out! L

  3. Socks, I am really sorry to hear it may be auto immune related. I will keep a good thought for you and your daughter and hope that they figure it out soon.

  4. I’m so glad that your persistence in getting to the bottom of your daughter’s pain and symptoms is producing results, even if they aren’t results you want to hear. And it’s good, if this IS RA or another autoimmune disease, that it’s being addressed NOW. You’ve done just the right thing, Mom.

    My daughter Cary has had RA symptoms, off and on, since her mid-teens, but so far has been able to deal with them with Aleve and patience. I asked our doctor, back then, to test for the Rf factor, and he did, and she was negative (as I’ve been, occasionally, too). That was the end of any further work on a diagnosis or treatment.

    I’ve been asking her for years now to get her doctor to redo that test, and for a referral to a rheumatologist (her symptoms fit RA perfectly)regardless of the outcome, but so far, she hasn’t done it, mainly out of money concerns. She has insurance, but a BIG deductible that’s formidable to someone without an equally big salary. I’m hoping that she will get this done soon, but since she’s an adult now, that’s all I CAN do anymore. Sigh.

    Sending comforting thoughts to you and your daughter, Socks.

  5. I hated reading this story about your daughter. I hope and pray that clarity and relief comes quickly for her and that stinking genetic part of autoimmunity doesn’t apply here.

  6. As a nurse, I have encouraged patients to keep on chasing the diagnosis. To keep asking the doctors the tough questions. I think in this age that doctors need to be prepared for patients that are not so quick to take the easy way. As long as patients are not defensive and adversarial, as a nurse I enjoy working with informed and thoughtful patients.

    My prayers for you and your daughter as you work through this time together.

  7. More lab results came today. ESR=36
    As soon as we have the paperwork completed, I’ll see about getting on the waiting list so she can get in to see the doctor sooner.

    Thank you for your kind words and your prayers.

  8. I guess we do need to verbalize the question “what else could it be” much more often to our docs. I’ve c/o shoulder pain for more than five years.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s