New Characters

It’s been just over two months since I originally wrote.  This is not because nothing has been happening, but more because so much has been happening in our home that the last thing I have time to think about is blogging … and most of it has been so challenging, confusing and difficult on the brain and on reality that I really did not know what to share and what to just muddle through and hope things would settle all on their own.  Unfortunately things did not settle and so I will try to give a bit of an update on what's been going on.

This blog was supposed to be about Rebecca,  but I think I’m going to have to do some expanding on our main character(s) and topic. 

Five days after I posted last Matthew’s supposed vestibular neuritis took a drastic turn, and not for the good L On January 26 he came home with severe dizziness to the point he didn’t know whether he was sick with a flu or if it was his regular dizziness that had increased.  This did not settle and over the past seven weeks he has been to the family doctor, ER a couple times, an emergency ENT appointment, had an MRI done and various blood work and has been to the pediatrician.  During this time Matthew has been out of school more than he has been in school, to the point where we’ve almost given up on sending him to school and mostly home school him.  He continues to have dizziness/vertigo which can get pretty extreme at times making it so that he has trouble walking.  When the dizziness is bad he feels like he’s going to black out when he stands up or tries to walk and prefers to just spend time in a lazy boy or laying down.  He gets headaches and zapping sensations in his head (as well as his arm and leg a couple times).  While he doesn’t sleep during the day he does sleep at least 11 hours each night and I still have to wake him in the morning.  He gets motions sickness, so he cannot take the bus for school or prefers not to go on car rides more the 10-15 minutes long.  As well he continues to do the neck cracking thing that first led us to doing chiropractor and physiotherapy and the vestibular neuritis diagnosis .  He also has these weird squeaky noises that he always makes in his throat.  At times he gets shotting pains in his stomach. He has low ferritin levels and his first blood test showed his TSH (thyroid) levels to be high, the second one showed them back in the acceptable level.   His vitamin D levels are low as well.  His MRI came back fine.

What have these appointments and test concluded?  At this time, nothing really.  The doctor doesn’t think his ferritin levels are low enough to cause his symptoms – although I beg to differ on that one, being someone who struggled for years with low ferritin and the side effects of it.  We have put him on a high dose of iron.  We will have to check his TSH levels again sometime in the future to see what level is more accurate or if they are doing some odd fluctation thing.  Again the doctors tell us that his symptoms do not match, which from what I read makes sense, but looking on support groups I read enough people who talk about having dizziness/vertigo.  The pediatrician is trying to get us in to see a neurologist … normal waiting list is about a year, but she’s hoping to try fast track us.

Now I have to change to another character – Marietta.  I mentioned in my introductory  post that Marietta is suffering from Post Concussion Syndrome.  So I’ll try keep her story brief ;)  On January 31, 2017 Marietta sustained a concussion while skiing. We are now over 14 months post concussion and her recovery has been at a standstill in the last 9 months.  Her main symptoms are sensitivity to noise and light, brain fog, headaches, extreme fatigue, at times nausea  and a brain that simply refuses to work a lot of the time.  If she tries to push her brain it shuts down and weird symptoms will begin to appear such as an inability to read (can see words but has no idea what they say) or an inability to walk, or a feeling like underwater and the person who is talking is far away.  Pushing her brain to work results in extreme pain in the back of her head that can last for days after an activity.   All of this has left her having a hard time to complete school.  She lost a semester right after her accident.  She returned to school in September taking only one course and in February she started two course, but is struggling to do justice to these courses.  She doesn’t attend school regularly and has to work at her own pace when her brain decides to work enough to allow her to complete work.   We have been to various doctors and continue to hear - rest, don’t over stimulate (but don’t understimulate as the brain will decondition) and  it will all go away in time.  Yet none of them can guide her on what to do or how to stimulate improvement.  We have given up on mainstream medicine and have tried Vision Therapy,  Osteopath and are currently working on Neurofeedback.  Marietta also gets car sick and cannot take the bus and so she requires a ride to school each day as well.  We live 45 minutes away from the high school, so this means a lot of driving is happening in our house with two kids unable to take the bus (thankfully the elementary school is only 8 minutes away).

All of this has had us thinking … WHY?  Why are all three kids sick?  Why are they all sick with head/neurological symptoms?  Is there a common theme here?  Is there a relationship between these problems?  We have always assumed Marietta has Post Concussion Syndrome, but is something else playing a factor so that she is unable to recover?  Matthew’s initial symptoms began slowly last spring and have increased over time until they came to head in January, is there a correlation with everyone getting sick in early 2017?

And so the questions have turned over in our mind and the answer slowly came to us.  Mold.  We knew about mold, we had read about how many Lyme patients suffer from Mold Toxin Illness (also known as CIRS – Chronic Inflammatory Response Syndrome) and that they need to have this issue under control before they begin Lyme treatment.  We knew that our house definitely had some mold issues.  What we did not know was whether the mold we continue to see in our home is toxic mold or safe mold as not all molds release dangerous toxins.  We also had no idea of the depth of problems toxic mold can cause and so began a lot more reading with an already fried brain from all the Lyme reading.  And the more we read the more we thought “this sounds very possible” and the more we read about how to deal with CIRS the more we thought “this is crazy” or “that’s way over the top” or “it’s not really that bad that we have to be that extreme in treatment”.

We researched the various testing options and whether to test the home or test our bodies.  The ultimate test is to go on a mold sabbatical (either move or an extended holiday, preferably in a dry desert area) and see how you feel, but moving presents its problems as you have no idea what you are moving into and whether it is safe without testing each location.    After reading through the various testing methods and how to approach this problem we decided on doing ERMI testing, a test that evaluates the DNA of the dust in your home to see what molds are in your home and whether they are at a dangerous level.  We also decided that whatever the tests results came back at we would still move -  partly because we had already been considering this before the whole mold thing arose and partly because it was the only way we’d have peace of mind about whether our home was the issue.  The ERMI tests would help us to determine how seriously we had to take the recommendations to leave all of our belongs behind due to cross-contamination, or whether we could take a chance on taking some of our items with us after properly cleaning them.

A week ago we received the results of our ERMI test.  A home is safe to live in if the results is 2 or under (the numbers can go  to -10).  A home has high toxic mold levels and becomes unsafe to live in if the results are 5 or higher.  Our home came back at 24.1.   Not only does our home have a mold toxin issue, it is considered unsafe to live in.  No wonder we have three sick kids!!