Talking to the Doctor

Pain isn’t arbitrary.  It has a cause.  Usually if we hurt, we know why – but not always.  It’s not good if a person has bilateral pain but hasn’t had any injuries.

Today my daughter asked for a rain check on our workout date because her hips were hurting too much to do anything.   Now I know where all the ibuprofen has been going.  My daughter has figured out that ibuprofen will help her feel better, so she’s been taking it a lot more often than I realized.

I have no medical training, but I’m pretty sure that this isn’t something to just blow off any more.  This has gone on for way too long.  It’s not getting better.  The kid has times she has to skip an activity (like today) because her hips hurt so much.  I  have no idea how to convey to our PCP how concerned I am about my daughter.  There is something wrong.

First (a while ago) I was concerned about my daughter always being tired.  She wasn’t sleepy – she just had no energy.  Ever.  I finally made an appointment for her to have a checkup, but her lab work came back normal.  I was not reassured.  A few normal tests doesn’t guarantee that everything is normal.  What’s that joke about WNL meaning we never looked?  All it really indicated to me was that finding a solution would take more investigation.  I wanted to scream, “Have I ever brought my kids in here for something mild?  When they’re sick I keep them in bed so they can recover.  We come in for things like broken bones and pneumonia.  There’s something wrong and you need to keep looking!”  But I said nothing.  If the doctor says there’s nothing wrong, we won’t return about that issue.

Then my daughter started having trouble with her hips.  She tries to hide it from me so that I won’t worry about her (and so that I won’t drag her back to the doctor where she’ll end up getting “poked with a needle” again).  One day it hurt so bad that she was vomiting; that’s kinda hard to hide.  That’s when I discovered how frequently this has been happening.  It turns out that my kids don’t want me to worry, so the older ones had been covering up for their sister so that I wouldn’t find out.  When she was puking from the pain, they decided that I should know.

I talked with my daughter, and back to the doctor we went.  I told him that she was afraid that since she has Raynauds like me, she’ll also get RA like me.  Talking to her, he said, “You’re kinda young for that,” and in those five words torpedoed my trust in him.

I’m pretty sure that wasn’t his intention.  It seemed like his goal was to get my daughter to quit worrying – but I’m guessing about that because I didn’t ask why he would say something so completely false.

Shortly after that appointment I took her back for a “routine” exam, and the doctor, looking back over his notes, said that RA is a possibility – but not likely.  I was glad that he brought it up because at that point I was thinking, “I really like this doctor, but don’t have any way of knowing if he’s competent or not.  If he thinks that kids don’t get RA, that’s a huge vote for the NOT competent camp.”  Technically, it would be accurate to say “kids don’t get RA”  because they don’t; they get JIA.  It is not, however, honest to lead someone to believe that there’s no chance they have a disease when there is, in fact, a possibility and the person has similar onset symptoms as a family member.

Obviously we’ll need to go back, and I want to have answers to everything the doctor is likely to ask.  I’ve been trying to remember what the questions are at a problem-specific appointment.  Where does it hurt?  When did it start?  Did anything cause it?  Does anything make it better?  Does anything make it worse?  I know there are other standard questions, too.  One of my books has a list, I just have to remember which book and then find the question list.  Oh – and then pry accurate answers out of my daughter.

In the meantime, I told my daughter that we’re going to keep a calendar to see if there’s some sort of pattern – and she can’t keep trying to hide things from me.  I’m already worried, so her strategy hasn’t worked!  She has to cooperate with me so we can figure this out and get her back to normal.  Except that I’m so afraid she’ll never see normal again.

I refuse to be one of those people who tell a doctor what tests to order, but something needs to happen.  This has been going on for over two years.  It’s time to find a solution.

I’m open to suggestions on how to discuss this with our doctor in a polite, respectful, not-obnoxious manner.
For those who prefer to email instead of leave comments:
I’d love some input on this.


6 thoughts on “Talking to the Doctor

  1. I can totally understand your frustrations. My younger daughter had a bunch of strange things going on a few years ago. Her sed rate was way high and some other things were not normal (I can’t remember right now). He sent her for a bone scan to rule out cancer but then sort of seemed disinterested after that was normal. He did periodically test her sed rate, which eventually went back to normal. I worry about what to do if she shows the same symptoms again since it is obvious he doesn’t know what to do with her.

    Maybe that is what is going on with your doctor? He isn’t sure how to proceed? But you are right, something needs to be done. Doctor things are very frustrating sometimes! I am feeling my own frustrations with mine right now. I think because they don’t live what we are telling them maybe they don’t realize how serious it is? Maybe they forget that you and I are not the kind of moms who go crazy over nothing so they treat us like over worried moms?

    Either way I completely understand your worry. And I am sorry.

  2. I do know how your daughter feels – I did, and still do, hate making my parents worry. As a child, that meant they watched me like a hawk and usually had to guess how I was feeling. I know now, of course, that that didn’t make things any easier on them.

    Like you, I find your doctor’s original dismissal of JRA concerning – and of course, lab tests don’t always tell the whole story. I hope the next appointment is more productive. As for how to talk to him, I do think it’s important to be assertive, but it’s hard to know how to proceed when he has been reluctant to entertain the idea of RA before. Can you ask him for a referral to a pediatric rheumatologist?

    In the meantime, I’m thinking of your daughter and hoping she can start on a path to feeling better soon.

  3. My daughter (she’s 28 now) also has occasional RA flares, and has since she was a teen. She’s been tested and tests were “normal.” Fortunately, her flares are rare, but I’m also concerned about her future. She has health insurance, but the company pays for so little she hates to go to the doctor unless, in her own words, “I’m close to death.”

    I hope your rheumy will be more aggressive about diagnosing your daughter, WS. It’s terrible to have a child in pain — and not be able to do anything about it. My heart is breaking for you both.

  4. I would go to a different doctor for a second opinion. He is so quick to rule our JRA, and lab tests don’t always tell the whole story. If the pain is so bad that she is vomiting, there is clearly something wrong and the doctor should be doing more to help you daughter.

  5. My sister gets pain in quite a few joints as well, but she isn’t keen on ‘being like me’, subjected to medications and blood tests. I insisted to bring her to the family physician to just take some blood for ESR, CRP and maybe RF and anti-CCP, on a day where she has a lot of pain. But like you, i don’t like telling the doctor to order tests.

    My plan with her for now is to ask my rheumy directly for some advice as to what to do with my sister. If not, i’ll probably just drag her to the family physician and just ask for her to be tested.

  6. Thank you.

    What I’ve learned so far is that this could be considered “watchful waiting.” It’s not that our concerns were dismissed, but that since the symptoms were helped with ibuprofen, the most compelling thing deemed appropriate at that time was making my daughter feel safe at the doctor. She didn’t want to see the doctor because she didn’t want to be given a shot or have blood drawn. Now she knows that it’s possible to see the doctor and have him listen, and that a doctor’s appointment doesn’t guarantee a needle stick. It was expected (but not stated) that we’d be back for further investigation if the problem continued. We are now gathering data to clarify the problem before seeing the doctor again to say, “This hasn’t resolved. Here’s what’s going on. What’s the next step?”

    @Tori – wow! I’m glad to hear that things went back to normal, but it is so scary when our kids get sick and we don’t know what’s wrong or how to fix things.

    @Helen – I guess I should be glad my kid isn’t a whiny hypochondriac. We’ve made a pact: my daughter will be honest with me about how she’s doing, and I’ll do the same for her. Turns out that my whole family worries about me because I try to “protect” them from knowing how I feel. It must run in the family 🙂

    @Wren – Ack! That sounds worse than my situation. Maybe palindromic rheumatism? I’m not so sure I’d see a doctor, either, for sporadic, managable symptoms if I thought that a diagnosis would lead to even more appointments and a lifetime of medication and blood draws. I’m sorry to hear your daughter’s experiencing this.

    @Andrea – Thank you. Our doctor has been very conscientious about every other issue we’ve ever seen him for, even to the extent of giving referals when he thought a specialist was appropriate (even though I’d rather just have him treat everything). I tend to minimize things, and so didn’t convey how serious I think this is. The doctor was trying to make sure my daughter would feel safe seeing him when there’s something wrong – I just think maybe we should have stepped out into the hall and had a heart-to-heart without my daughter overhearing. I expect a referral to a rheumy at some point, but if my daughter gets worse and the doc doesn’t take it seriously, then the entire family will find a different PCP.

    @Steph – Sounds like you have a good plan. I don’t know your sister; how would she respond to “People don’t get to pick their diseases. We pick how we want them treated.”? I hope your sister is able to get effective treatment before she has any permanent damage. It’s sure hard seeing people we love suffer.

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