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