Tin God Syndrome Revisited: The My-Way-or-the-Highway Doc
When it rains, it freaking pours....
Yesterday morning, Eden woke up with strange, brownish-purple bruises up and down her leg. They were not there when I put her to bed; there was nothing in her crib that could cause the bruises. Worried, I called her pediatrician who insisted we be seen right away. Our regular doctor wasn't there, but another ped was able to see us.
She examined the baby, and then told us to go to the ER. She suspected a disorder called HSP, that involves high platelets in the blood; this could be dangerous. Scared witless, we went to the ER right away...
...and ran smack dab into yet another doctor suffering from a form of Tin God Syndrome: this time, the My-Way-or-the-Highway Doc.
Highway Docs not only believe themselves to always be right, they simply cannot tolerate being questioned AT ALL. You either do things their way, or walk right out the door. Caring for patients takes a backseat to their enormous ego and stiffling impatience.
Highway examines the baby and immediately announces that he wants to do a spinal tap, in a tone that makes it quite clear that he isn't asking, he's telling. This particular Highway hasn't met me before, and isn't aware of the small but important fact that I, when it comes to my children, am an immovable mountain. I do not fold to Highway Docs. I let Highway know, in no uncertain terms, that I will not permit a spinal tap to be done on my baby unless A) there is a clear indication of meningitis, and B) all other options have been exhausted. I note that Eden shows none of the symptoms of meningitis: she is eating well, alert and full of energy, and does not exhibit a stiff neck or fever. The rash of bruises also simply does not resemble the rash associated with meningitis. I make it pretty clear that I'm not going to let this happen.
Highway is now irritated. As I mentioned before, Highway Docs do not like to be questioned....ESPECIALLY by someone who actually knows what they are talking about. And in this instance, I did know a thing or two about meningitis. You see, several years ago, my neighbor lost her infant to the disease. I made a point of educating myself there and then.
Highway orders a blood and urine test. He tries again to get me to allow the spinal tap, by telling me that it's "better to be safe than sorry" and that it is the "only way" he can "rule out" meningitis. I counter by saying that you can also rule out meningitis by lack of associated symptomology. Highway is not pleased. He also tells me that a lumbar puncture is a "simple test" and is "virtually painless." I inform him that there can be serious complications from spinal taps, and that they are NOT painless. He argues that they are. I ask him if he's ever had one. Surprise, surprise...he has not. I let him know that as a person with MS, I know ALL about spinal taps, and I am NOT letting my baby have one with only some bruises as an indicator. After a few more minutes of banter, we decide to wait until the CBC and urine results are back, and then discuss it again.
The blood is drawn, the urine is taken by catheter, and I am nursing my very unhappy baby when a nurse comes in and approaches my child with some sort of cream. I assume it's for the rash, and that my daughter's problem has been diagnosed. Not so. It's a numbing cream....for the spinal tap.
I am now getting annoyed. I let the nurse know that there will not be any spinal tap, so the cream was unnecessary. She tells me that Highway ordered it...meaning he ignored our agreement to wait until the lab results were in. I am not pleased...and I am not letting the nurse put the cream on my child's back. The nurse warns me that Highway will be unhappy about this; at this point, I could care less about Highway's fragile emotional state. "Does this mean you will be refusing a spinal tap?" she asks. "Unless there is a clear reason for it, yes," I reply. The nurse clucks her tongue like an old mother hen and leaves to inform Highway of my refusal.
The tests come back in, and it is as the pediatrician at the office believed: elevated platelets and elevated white blood cell count. These are a clear indication of HSP. I assume Eden will be getting fluids and then sent home. I also assume that Highway now realizes that there is no meningitis present, so the spinal tap was indeed an unnecessary procedure.
I underestimated Highway:
Highway: I'll be sending in a nurse to prep her for the lumbar puncture.
Me: Why? It seems to me she probably has HSP, as her pediatrician suspected.
Highway: Well, we won't know for sure until we get the spinal tap.
Me: I wasn't aware that you could test for HSP from spinal fluid.
Highway: (visibly annoyed) You can't. I just need to rule out meningitis.
Me: I'm not letting her have a spinal tap. I thought I made myself pretty clear on that count.
Highway: You're tying my hands, and I can't do anything for you when you tie my hands like that.
Me: What are you saying?
Highway: I'm saying I can't treat her, when you tie my hands.
Me: You're refusing to treat her unless I consent to a spinal tap?
Highway: I can't treat her unless I rule out meningitis.
Me: (trying to stay calm) Let's say you had the results of a spinal tap in your hands right now, and there's no presence of meningitis. What would you do to treat my daughter?
Highway: I don't know, because I don't have those results.
Me: You don't know what you'd do if the results were negative?
Highway: You're tying my hands here.
Me: It seems to me as if this is a case of HSP. Can you not treat it as such?
Highway: We've ruled that out.
Me: You've ruled out HSP?
Highway: Yes, and now we need to rule out meningitis.
Me: If she had even the slightest fever, or had been vomitting, I'd be on board with this, Doctor. But she has no indications of meningitis, and I am not willing to put her through a spinal tap for a couple of bruises.
Highway: I don't think you are being reasonable about this. Meningitis is very serious.
Me: Yes, it is. And if she had ANY of the symptoms, I'd be the first in line for a spinal tap. But she doesn't.
Highway: Are you refusing a lumbar puncture?
Me: (exasperated) Yes.
Highway: Then you'll have to go home.
Highway: There's nothing I can do to treat her if I can't rule out meningitis.
Highway storms out. A few minutes later, the nurse comes in with a form for me to sign. I am told that I have two choices: consent to the lumbar puncture, or sign out AMA (Against Medical Advice). I am dumbfounded, but not about to be bullied. I signed out AMA, and called her pediatrician from the hospital room as I was waiting for our discharge papers. I made an appointment for the next morning.
I spent a very nerve-wracking night, worrying about Eden. The next morning, we notice even more bruises on her arms and legs. We rush to her doctor's, and the he diagnosed her within minutes....HSP.
I told him about the Highway doc, and he told me that we'd made the right decision. There was NO call for a spinal tap, and in fact, the guidelines for purpura disorders call for NO unnecessary testing. As we left the office, our pediatrician was on the phone with Eden's chart in front of him. I think Highway might have a little less ass today than he did yesterday....
I am writing a letter of complaint, because Highway docs are, in my opinion, some of the worst Tin God doctors out there. He couldn't bully me into unnecessary and potentially harmful testing because I am knowledgable on the subject; not every parent is. And quite frankly...he pissed me off. He lied to me on several counts: he didn't rule out HSP (he couldn't have, since that's what she has), and there was no need for a spinal tap. And making me sign out AMA? Ridiculous.
Beware the Highway doc, fellow bloggies. An apple a day won't keep them away...but a letter to the American Medical Association might.