photo courtesy of Stuart Miles at http://freedigitalphoto.net
I took Mr. Charm to the GI on Monday, Oct. 15th. The doctor wouldn’t give us the hydrogen breath test, but did other tests to ‘rule things out’.
We were told we would be called with the results. They didn’t call.
I finally called the doctor on Friday, the 26th to ask if the tests had returned. After leaving a message, his nurse called back.
The phone call felt like an Abbott and Costello skit…except, this really wasn’t funny.
(begin scene)
(my thoughts are in parenthesis)
Nurse: “Oh, yes. The tests have come back. You were calling for the results?” (Duh.)
Me: (taking a deep breath and trying not to telepathically slap her) “Yes, please.”
Nurse: “OK, his CBC’s were normal. (Good.) The Celiac test was negative. (Could have told you that.) The stool samples were negative for parasites. (Duh.) The chlorine sweat test came back negative, but “on the high side of negative”.” (Already told you he couldn’t have cystic fibrosis, and what the h*ll does that mean, the ‘high side of negative’?)
Me: “What does THAT mean? The “high side of negative”?”
Nurse: “Oh, like if negative is 0-10, his levels were 0-8.” (As if that explained anything.)
Me: “But what does that mean?”
Nurse: “It just means that we need to watch out for it.”
Me: “Watch out for what, exactly?!”
Nurse: “It’s just in his notes, you know, to watch out for it.”
Me: “…” (I decided to let it go. Mr. Charm doesn’t have cystic fibrosis; cystic fibrosis, to my knowledge, is something you either have or don’t have, and I have enough things to worry about.)
Nurse: “OK, so, those are the results.” (I could tell she was wrapping up the conversation, trying to get off the phone.)
So I interrupted her.
Me: “So what next? We came in to have a hydrogen breath test, which the doctor would not give us, even though he insisted on all these other tests that I knew would be negative, so the question of whether my son has fructose malabsorption is still not answered! What does the doctor want to do now?”
Nurse: “Oh, um, well, I can call the lab and see if they can fit him in for a test and give you a call back.”
Me: (seriously trying to not hurt my head with eye-rolling) “Yes, please, that would be nice.”
(end scene)
AAAAARRRRRGGGGGHHHHH!!!!!!
She did call back; they can test him at 7:00 a.m. in a couple weeks. Then she ran through the ‘what to do’s’ before the test, which I already knew (plain foods – chicken, rice, potato, water, no food after midnight, etc.). Then she sort of…threw out a comment about making sure to bring things to entertain my son because the test takes three hours to take.
Maybe I’m a little sensitive, but I detected a tone in the last comment that sort of irritated me. I’ve outlined how the last two visits to this GI went; how Mr. Charm was going stir-crazy in those little exam rooms after TWO HOURS of being stuck in one. It sounded to me like she was pointing out to the ‘bad mother’ to make sure to bring entertainment this time!
Well, excuse me, Little Miss “I Can Hardly Understand You When You Do Bother To Call Me Back”, but if I were TOLD that a normal appointment with this doctor would TAKE two or three hours, I WOULD have brought more to entertain my son. I didn’t think I was MOVING IN, I thought I was coming for a short visit!
Hmpf. OK. Snark is over. (Maybe.)
Then I told her that I’d already implemented a fructose-free diet for Mr. Charm, and would that in any way affect the hydrogen breath test? She didn’t know. She’ll call me back.
Sure. I’ll hold my breath. (OK, still had a little snark left.)
So now to decide whether I want to drive the kids down the night before, get a hotel room, be up and at ’em at an ungodly early hour of the morning…or load the kids up in the car at 2:30 a.m. and drive straight through.
Which one only sucks badly, and which one sucks REALLY badly?
Of course, there is a third option: don’t get the test!
Sigh! Gasp! Seriously? After all you’ve gone through to get it, you’re thinking of not getting it? (I can hear you all thinking that!)
Yes, seriously.
The hydrogen breath test can have false negatives; some people don’t create hydrogen in their lungs when exposed to fructose/lactose/etc., instead, they produce methane. In fact, many hospitals are now doing a hydrogen/methane breath test to reduce the false negative results they get. I have no idea if this hospital does the combo test or not, but if it does not, Mr. Charm could TEST negative and still BE positive.
The only way to know for sure is to go through a fructose elimination diet and then reintroduce foods to see the results.
Which I am already doing.
And other than giving us the diagnosis of FPIES, what exactly has ANY doctor on our medical “team” done to help us since being released from the hospital? (Because they were all awesome during our hospitalization!)
Let’s see…I’ve been told the WRONG FOODS to eliminate from my diet. We’ve been instructed to go visit a nutritionist, who basically didn’t tell us anything I hadn’t already taught myself. I’ve been told to ‘not be so paranoid’ by the man who then gave my son poison crayons. I’ve been told that my son is probably allergic to my milk, and not something in my milk. I’ve been told to give up nursing and try a different elemental formula, which my son then reacted to.
So HOW, exactly, are doctors worth another shiny red cent of our money, and HOW, exactly, are doctors worth another millisecond of my time?
I seem to be the only freaking person in the whole d**n world that can diagnose, treat, and care for my sons properly…and I’m a Flight Attendant that dropped out of college! If *I* can go online, read, research, and figure this out…shouldn’t a “I Spent An Extra Ten Years In School” M.-freakin’-D. be able to do BETTER????
(OK, I lied. Snark still lives here.)
I can’t think of a single good reason to spend another $100 in gas costs, plus the cost of a hotel, plus the wear and tear on my vehicle (not to mention the wear and tear on MAMA), and put my kids through such an upheaval in their routine to drive down for a test I requested and was ready to do two weeks ago! Especially not with the fact that we’re already on a fructose elimination diet and I’m seeing MAJOR improvement in Mr. Charm!
So, I give in. I don’t know what to do next, but I do know this: I hate (our) doctors.
That is all. (scratch)
(And if you get that last reference, we can totally be friends!)
Anyone else hate doctors? Please, share your horror stories! You know, so I can have MORE reason to hate doctors!!
*For the record, I don’t really hate ALL doctors. The Geek and I have a wonderful GP that we love, the GP my parents and I used for years literally saved my Daddy’s life and we were heartbroken when he left his practice, and the OB/GYN who delivered Mr. Happy is an absolute sweetheart and awesome at what she does. It’s just the ‘team’ we have for our sons that is making me want to spit nails!
__________
UPDATE!!
After I posted this, I got a phone call from the actual GI hisself.
He was irritated. “I don’t find that (the hydrogen breath test) to be a useful test. I’ll give you names of some of my colleagues who administer the test, but I’ve never given one in the ten years I’ve been here.”
Well. That’s NOT what you said at the appointment, Mr. Doctor! You said – and I quote – “It’s hard to give that test to little ones.” NOT that the test is bunk.
Anyway, I told him we were already on a fructose free diet, and he asked how it was going, and when I started to ask him questions about how to proceed from here he answered two of my questions and then said “OK, bye-bye.”
So, I didn’t get to ask the questions I still have, and this further makes me go “Doctor’s suck.”
Or maybe they don’t, and I just irritate Doctor’s and bring out the worst in them.
Whatever. I’m still done with them. For now, at least.
