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Wednesday, January 13, 2010

We're still at it...



Why is it that doctors are so hesitant to run tests? It's not hard. They don't even do the work - they send it off to the lab. So why is it like pulling teeth to get a stinkin' test run? We went in today for a(nother) follow up for Connor and it took me an hour to convince him it wasn't just another virus.... It's been almost 8 weeks and Connor is not getting better. In fact, the wheezing is back, and he's up all night with his congestion and he's really grumpy lately which, if you know Connor, is very uncharacteristic. I know, I know, all babies get grumpy. But not Connor -- only when he's really sick. So we went in and told them our case, and told them he may have been exposed to strep over Christmas since Brooke, Diane, and possibly Carter all now have strep. So, he looked at Connor's throat and said "nope".
I said, "well, his cousins get it on various parts of the body, including diaper rash." He looked and nothing.
He said "it's probably just the virus hanging on, and you just have to let it run its course". ARGH! Not again! I'm telling you, something else is wrong!!
Me: "Is there any way it could be asthma?"
Him: "In an infant this young, they don't really call it 'asthma'."
Me: "What do they call it?"
Him: (smiling) "Bronchiolitis." ARGH.
Me: "So the treatment would be the same? Should we continue the treatment?"
Him: "Yes, definitely."
Me: "Well, It is getting worse, so I'm afraid it may have migrated into something else. Is there any tests we can do to confirm it's RSV causing Bronchiolitis?".
Him: "Well, we cooouuuld. But it's not really going to change anything."
Me: "I would really appreciate it if we did anyway."
Him: "OK. Actually, there is a quick test we could run that takes ~15 mins. I'll have the nurse do that one."
Me: "Thankyou." If it only takes 15 minutes, why are we arguing? in the time it takes to argue (blah blah blah).
So the nurse comes in and there was some confusion, which ended up in her taking two samples instead of one. Fine by me - more testing. 15 minutes later the doctor comes back and tells me "the test came back negative, so now what?" and he winks. I think this was his attempt at being sarcastic, which I did not appreciate.
Me: "Well, the nurse said if it came back negative we could send off the second sample to the lab to be more conclusive?"
Him: "We could do that, no problem."
Me: "Also, I'm wondering why his wheezing came back and his congestion just seems to be getting worse? and why he's throwing/spitting up all the time? I'm just concerned that continuing his current treatment isn't going to make him well again."
Him: "My guess is that he has reflux, which makes him spit up and then the spit up goes back into the lungs which makes the wheezing worse."
Me: "It doesn't really seem like reflux since he only pukes when the mucous gets so bad that it makes him gag. Plus, before he was sick he NEVER spit up or puked. Now he does it all the time and it seems like it's because of all the mucous."
Him: "Well I'll give you some medication for the reflux anyway and we'll see if that makes it better."
Me: "Is there any way it could be something like allergies instead?"
Him: "It's really too early to check for allergies. And, if you go to an allergist, they put every one of their kids on reflux medication anyway." Fine.
Me: "Well, I'd still like put a name on this virus. Are there any other tests we could run? I mean last time the blood panel showed it was viral, so I'm assuming it still is? Could we run another panel?"
Him: "Well it doesn't really matter which virus it is because it won't change our course of action. But we could re-do the panel just to check." At this point I could tell that he was humoring me and didn't really think the test was necessary, but I didn't care because I wasn't leaving his office until we got answers! So the nurse came in and pricked a very grumpy finger, and then we waited for another 20 minutes to get the CBC test results. He came back in the office 20 minutes later, blushing a bit.
Him: "Well, I'm glad you leaned on me a little to run these tests because there *does* seem to be an infection going on here." HA! He proceeded to show me how the lymphocytes were back to normal and now the white blood cell count was high. HA! and then he said, "And then I had an 'a-hah!' moment -- this must be whooping cough! I've had only a few rare cases where whooping cough has been hard to diagnose. It ends up being a persistent cough that just goes on for months!"
Me: "Is there any way to be sure that it's whooping cough?"
Him: "We could send off the second sample to be tested for pertussis instead of RSV."
Me: "Yeah, let's do that!"
Him: "Meanwhile, I'll prescribe an antibiotic because he'll need it anyway, and it will wipe out the whooping cough if it's there."
Me: "That would be great! should we still continue the steroid and bronchial dilator?"
Him: "Yes, definietly."
Me: "OK."
Well, hallelujah! I definitely didn't want to endure this for months! And I know Connor doesn't either! What is it that they say about mothers and their babies? Oh, yes, they usually know when something is going on! Why do doctors not respect that? I must say, I don't think I would have had the courage to contradict him so much if I hadn't followed Angie's and Gary's blog... Angie described how, at first, she would just believe whatever the doctor told her, and looking back, she wished she had done more research. Well, I did research (I googled "misdiagnosed bronchiolitis") and found that it could also be asthma, pneumonia, COPD, Cystic Fibrosis, Upper respiratory infection, among a number of other things. So, I was ready to demand action! Good thing...

When I got back to the office, I Google'd "Whooping Cough" to see what it was and found EXACTLY all of his symptoms, to a "T". EXACTLY! Here's what it said:

Symptoms

By Mayo Clinic staff

Once you become infected with whooping cough, it takes three to 12 days for signs and symptoms to appear. They're usually mild at first and resemble those of a common cold:

  • Runny nose
  • Nasal congestion
  • Sneezing
  • Red, watery eyes
  • A mild fever
  • Dry cough

After a week or two, signs and symptoms worsen. Severe and prolonged coughing attacks may:

  • Bring up thick phlegm
  • Provoke vomiting
  • Result in a red or blue face
  • Cause extreme fatigue
  • End with a high-pitched "whoop" sound during the next breath of air

However, many people — particularly infants, adolescents and adults — don't develop the characteristic whoop. Sometimes, a persistent hacking cough is the only sign that an adolescent or adult has whooping cough.

When to see a doctor
Call your doctor if prolonged coughing spells cause you or your child to:

  • Vomit
  • Turn red or blue
  • Inhale with a whooping sound
Hm. Imagine that. It wasn't just a cold hanging on for a long time. I shouldn't just sit back and wait it out. I should fight for an answer!!!!! Don't get me wrong, doctors are very smart and know alot about how our bodies work. But they see SO MANY people and it's easy for them to make mistakes too... Just don't ever lie down and take it if you think something else is going on. Insist on a test to confirm!! how hard is that anyway?

OK, I'll get off my soapbox now. At least we're making progress, and hopefully this round of antibiotics will work. we'll have definitive test results back in two days and we'll re-assess at that point.

--just a quick update -- it was NOT whooping cough, which is good because I'm pretty sure we got the vaccination for pertussis. We still don't know what it is, but hopefully the antibiotics will kill it. So far, he still has the cough, but he's sleeping better and feeling better. Still puking, so we'll see.... :(

7 comments:

Lindabee said...

Well done Brit....reminds me of when you used to take your math teachers on at school!!! [chortle, chortle]

Ashley said...

Way to be persistent!

BC Thompson Family said...

You always have to be straight forward with doctors you pay for their service so they might as well do what they get paid for! You should totally look for a dr who takes your ideas more realistic. I would have been ticked if our actually dr did that to us. I have had on call dr act that way but never my actually dr. Well good luck on his road to recovery hope this is it!

Living Lavallee said...

Wow - so glad you were persistent. Mother does know best!

imbritney said...

Christi - I think you found the only dr out there that doesn't act that way, you definitely lucked out! (Maybe the MD makes a difference?) I've been to several in the area already when I was looking for a pediatrician, and this guy was the best of the bunch... :(. And, actually, the on-call dr I saw in Hailey was even worse. He actually said "I treat the patient, not the numbers, so since Connor is happy we won't hospitalize him...." when Connor had O2 levels at 87%... I think Connor would die in his care. :P

mrs s said...

i'm so glad you were able to get some more answers. medical care can be so frustrating sometimes!

Dawna Greer said...

Wow! What a story--glad you were persistent and hung in there. Nobody knows about a baby like his own mother! Way to go!