Subtitled, A Medical Blog for the Informed Patient, Dr. Ed Pullen is a family practice physician-blogger.
Check out his archives, as well as his resources page. There’s lots of good material there, and it appears we can expect more to come.
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: firstname.lastname@example.org
I’d love some input on this.