Background

At the end of March 2017 Rebecca started coming home looking completely exhausted with rosy cheeks and not feeling well.  We assumed she was coming down with something, but being the stubborn girl she is she continued to go to school each day.  She began to feel dizzy each day and by noon hour each day felt like she was going to faint.  She was extremely tired and her eyes started to do some weird things where she felt like she had tunnel vision.  She came home one day, looking rather unwell and I asked if I should make a doctor’s appointment for her, to which she replied “Yes”.  For Rebecca to respond something other than a shrug or  “Idunno” or “Doesn’tmatter” (yes, there are no spaces in those words because these are famous words in her vocabulary that sound like one word when she says them) was a very obvious sign that she was not feeling well.

Our family doctors was concerned about these symptoms and ordered some blood work and gave us a referral to see a pediatrician ASAP (within the next week).  When I messaged the family doctor a few days later to let her know that Rebecca was now having severe pounding headaches on the top of her head, she advise if we couldn’t see the pediatrician in the next few days to take her to Emerge.  We did get in to see the pediatrician, who did an assessment and felt there was no reason for neurological concerns or to do a scan, she ordered some more blood work, mostly looking for Mono (EBV) due to the extreme fatigue that Rebecca continued to have.  A couple weeks later we were told that Rebecca’s blood work came back showing she “possibly” had Mono, even though the only symptom she had that fit the Mono description was the extreme fatigue.  Mono usually starts off with a sore throat, fevers, swollen lymph nodes … basically a cold/sickness … Rebecca had had nothing of this assort at any point in the previous months.  Our pediatrician said that sometimes people just don’t start off with the classic symptoms.   (For those more medically savvy, almost all of us get EBV, usually during our childhood and it barely is noticeable, it's when you get it when you're older that it has more long last symptoms.  Therefore Rebecca's blood work was considered "possible" EBV because it will continue to show up in your blood work for the rest of your life if you have already fought it before.  Rebecca's blood test did not so much show an active EBV, but if symptoms match you can therefore diagnose as having EBV)

Over the next couple months Rebecca focused on resting.  She stopped teaching piano and all extra-curricular activities and focused on sleeping and keeping up with school.  She would take days off of school to get extra rest and help her get through the week.  Research of the EBV blood test results further convinced me that this was not Mono we were dealing with and so after a couple months of lots of rest and no improvement we returned to the pediatrician in June to ask for more testing.  Over the following months more blood work was done, a CT scan, holter monitor, diabetes testing, blood pressure monitoring, Canadian lyme testing, a diet change (grain, sugar and milk free – which made her feel worse) … but nothing was showing up.  Rebecca took the summer off and did not work, but even then she did not improve.  We had thought maybe the stress of school was causing her problems, but when nothing eased over the summer that diminished our thoughts on stress/anxiety. 

School started again in September and Rebecca returned to school with the diagnosis of Chronic Fatigue Syndrome (in other words, the doctor had no clue what it was, but acknowledge she wasn't feeling well).  Since physical exercise exhausted her and made her feel worse, she was advised by the pediatrician not to do Phys. Ed. and we worked out a reduced load for her to still be able to get her credit.  We were concerned about how she would manage returning to school, but it seemed with time she actually seemed to be doing better.  She was able to go to school every day, she no longer had the pink cheeks very often and after a few weeks began to take up teaching some of her piano students again.  Rebecca doesn’t say much, so from the outside looking in she appeared to be doing a bit better.  She still needed tons of sleep, but she could handle some extra activities again.  But if you directly asked her how she was feeling then you would realize that she wasn’t feeling much better, she had just gotten used to it and was learning how to manage with how she felt.  The one thing that had changed since the original symptoms was that she no longer was dizzy as much, but instead has constant brain fog that made it hard to concentrate or focus.

We waited until the end of November for the results of the last test we had put our hopes in finding answer from – a Sleep Study to see if she had Periodic Limb Movement Disorder (PLMD), but this came back showing she sleeps pretty good, there were some issues with the amount of air she takes in at times, but overall there was no PLMD or sleep apnea.  We do know that Rebecca twitches/jerks in her sleep and the PLMD often doesn’t show up on Sleep Studies, but we didn’t think her twitching/jerking was that bad to be causing her problems.

We had run out of ideas of what to test for and our doctor wasn’t helping us either.  She left it as Chronic Fatigue Syndrome and told us she would send a referral to a neurologist to see what he thought.  An MRI was also ordered.  We decided to try a naturopath/nutritionist/herbalist next, but Rebecca’s currently taking lots of different herbals and we’re not seeing any change.  In the meantime we did some other testing that might have provided us with an answer.