the fatigue

Teagan has had a rough few weeks.  In many ways he is doing amazingly well.  But, in addition to catching a cold a few days ago, there are a few lingering things that have been really difficult for him.  Mainly, the fatigue.  The rash began to improve when we started the natural anti-viral and wow, it was a drastic change!  I regret waiting so long to start it!  We should have done that much sooner.  Back to the fatigue, it concerns us the most right now.  Why?  Because it has been around for a long time.  A really long time.  His old pedi tested for low iron, he thought he might be anemic, we were told it would get better once the apnea was gone and his adenoids removed, but it didn’t.  I got laughed at every time I brought it up.  He’d say “you realize most people come in here complaining their children don’t sleep right?!”.  Yeah, frustrating, no one wants to see their child have sleep problems, no matter what end of the road they are on.  I complained about it to our doctors constantly.  Iron and anemia tests all came back normal.  Nothing seemed to help.  It got better here and there while recovering from the demyelination, but the last few weeks it has been at an all time high with him having about one good hour per day.  Our two year old, who should be running me ragged, filled with energy, bouncing all over the place, spends the day laying on the ground, searching for his blankie, falling alseep, exhausted all day long.  I’ve had a 2 year old boy to care for before and let me tell you, it takes work to keep up with them, I know this isn’t right.  My son should not be rolling around on the floor with his blankie in every room of the house instead of begging to go outside or play a game or build with blocks.  So I made another round of doctors appointments to talk through it with his new team of doctors.  One I talked to over the phone, one we had an appointment with yesterday.  I had a long list of things to consider and they threw some new ideas my way too.  We talked about everything from Epstein Barr to Lyme Disease to MS.  What we walked away with, and what makes the most sense to everyone, is that it could be a Mitochondrial issue.  And that makes my heart sink.  It is something we’ve had on our radar for a very long time, longer than demyelination, longer than it being a vaccine reaction even.  It was something we stumbled upon early on and that more than one doctor mentioned.  They also mentioned what has happened with Teagan could be more than one thing.  We had hopes it was “just” demyelination and that the lingering things would disappear.  But the fatigue is worse.  Why?  Are we dealing with more than one thing here?  I still can’t wrap my mind around that, but I guess there is no choice.

So, what is Mitochondria?

Per WebMD:  Mitochondria are the energy-making structures inside the cells of our bodies. They have their own DNA, which we inherit directly from our mothers. Mitochondrial diseases or disorders are caused by defects in mitochondrial DNA, or by defects in regular DNA that affect mitochondrial function.  People with mitochondrial disease may get too little energy to power the immune system, the nervous system, and/or other important bodily functions. Or their dysfunctional mitochondria allow toxins to build up within cells.

There are wide ranges of symptoms and severities.  Mitochondria disorders in many people it is an underlying condition.  And that may be the case with Teagan, his exhaustion has been around for a year.  He is not showing a lot of other symptoms as of yet, so we are hopeful.  Our goal is to do several things.  First, do some genetic testing and second, treat it only naturally.  Thankfully both are possible!  We intend to add a Nano-glutathione spray, a low dose of COQ10 and Ribose into his treatment plan, adding one by one at least a week apart and see if there are any improvements.  The other key thing we can do is during that one good hour or so a day, get him moving, no more free play during that time, I want him walking, running, riding, exercising.  Mitochondria will actively regenerate if we can give it a kick start.  In Teagan’s case, it isn’t enough to just do that, because the severe fatigue always returns, he’ll need treatment as well.  But it can’t hurt, it can only help.

So, another aspect to tackle, another disorder to research but hopefully we can find some some answers that will improve his daily life.

Rachel - Its beautiful the way you love him mama. I cant imagine how hard it is, as what we’ve been through as parents cant compare and yet has stretched my heart almost more than I could bear at times. God has given him YOU for a reason and you are doing a wonderful job. Keep fighting and searching and praying {{hugs}}

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