Pneumonia and Doctors Who Don't Believe

If you recall from the last post, we started off the school year “swimming in hope.” A lot of people liked that image. I got a lot of comments about it. Well, I’m still feeling hopeful but it’s October and apparently it’s time to get out of the water.

The first month of school went very well for Ellie. She did pretty well with sleep, although that is with one of us sleeping in her room with her. We do this because we have not conquered her nighttime anxiety and if she wakes up and sees one of us sleeping there she will go right back to sleep. If we aren’t there it often causes middle of the night drama so this is the easiest solution right now. At least she is back in her own room. During September she was also eating well and it has seemed like the fancy vitamins have helped increase her overall energy throughout the day (which has been sort of miraculous to witness).

At the end of September Ellie had braces put on. Then a day later she went to bed with a fever, the beginning of a long illness. These two things don’t have anything to do with one another, the braces and the illness I mean, but I thought it was pretty funny when I found out that a few first grade friends thought that she ended up missing a week and a half of school because of her new braces. Don’t worry kids, braces will not cause that much trauma, I promise!

She only has to wear this face mask part at night.

The first three nights of her virus she woke up in the middle of the night with CVS troubles. At least this time I knew it was a virus of some sort triggering her CVS because of the non-stop round the clock fever. During a typical CVS episode she will spike a fever (usually 102) but it doesn't last. So if a fever lasts I know she is fighting something. I knew it was CVS, and not a stomach bug, because of the timing, the way it came on, how long it lasted, what she looked like, what she complained of, the intensity of it starting and the quick end after meds…and of course the desire for waffles the next morning.

On day 3 of a fever I decided to bring her to a weekend walk-in clinic. There had been 2 or 3 notices of strep throat in the first grade the previous week and Ellie said her throat was killing her. The tests came back negative. So, more waiting, more calling it a “bad bug,” more resting and more middle of the night CVS episodes. On day 5 (exhausted mommy, miserable Ellie) we went to our pediatrician’s office but (of course) our regular pediatrician wasn’t working and so we got the doctor who basically doesn’t believe in CVS. He took another strep swab, looked her over and told us, “it’s just a bad bug.” Poor Ellie was so miserable, and by this point she had basically stopped eating all together and would only drink when I sat there and yelled at her to do it (harsh but better than an IV in the hospital). Those are the parenting moments that really suck. I should have been yelling at the pediatrician, not poor Ellie. 

 

The next day Ellie developed a nasty sounding cough and so on day 7 of the high fevers we were back in the office and that same doctor was hurrying out of the room to get a blood-oxygen monitor and telling us that Ellie had pneumonia. Ugh! It’s so frustrating. I don’t think it’s anyone’s fault necessarily, I know doctors have to be careful with antibiotics but come on, this kid has abnormal health issues, couldn’t we have tried an antibiotic on day 5 of the high fevers? Unfortunately this is the doctor who doesn’t seem to have a high opinion of CVS or mito-disease. He isn’t a bad guy, I think he is just old school and probably hasn’t read up on it. He also doesn't seem to enjoy children. At all. I'll just let you fill in your own commentary on that part. In the end it's Ellie who suffers the consequences. She missed a week and a half of school (7 days I think). No hospital visits though. I feel proud of myself for being persistent. My guess is that had we waited a few more days we would have ended up in the hospital, if not for the pneumonia itself then perhaps because Ellie had stopped eating and was hardly drinking. Within 48 hours of the antibiotic she was a new woman, although we tried to take it easy for a while.

Colin caught the same virus and was sick about a week after Ellie first got sick. A perfect example of Ellie's poor immunity--he had a very high fever for about 24 hours, slept a ton, tummy hurt but no vomiting and a day later was back to totally fine. 

My main thoughts about this experience... how strange, confusing and frustrating it is to have a child who has a disorder that is not well known, and for doctors (who I generally highly respect) to talk to you like you are overreacting or something. After the third or fourth night of CVS episodes I told the doctor that I thought her episodes were subsiding. His response, "Good. That part of the virus has worked itself out then." GAH! So frustrating! I am unable to do this because I have two bouncy, loud, silly kids with me every time we are there, but one of these times I just want to say, "Can we just have an open, honest conversation about this? Because I've observed my kid 24/7 for the last 7 years and I think these other doctors are really onto something. They have been able to describe her symptoms before I have even told them about her. They have provided medicine that has provided enormous amounts of relief for her. Please explain why you are so resistant to this diagnosis." 

I am not ready to switch pediatrician offices quite yet. This office is very close to our house and their actual pediatrician has been great. She has called and had long, extensive conversations with me late at night and on weekends. She genuinely cares about Ellie and is totally on board with everything CVS. Any other readers out there ever experienced a doctor who just plain disagrees or is skeptical of CVS or Mito-disease?