Autoimmune Encephalitis

I have written previously about our middle child.  He is nearly 10 years old and has been ill since he was about 13 months old.  I may turn this post into multiple parts, as he is a difficult child from a medical standpoint.  The hard thing in writing this, and why I’ve avoided it thus far, is he looks wonderful.  When in public, he often seems to act fine.  So often we keep what we go through with him to ourselves.  It’s just easier not to talk about it.

BUT, we HAVE to talk about it.  He has some major issues going on.  And our hope is, by sharing, we can help someone else.  That is, in fact, the entire purpose of this blog; to educate others in order to help them.

When Trevor was about 13 months old, he started with the terrible 2s, or so we thought.  As he got older, we thought he was autistic.  And, had we pushed, I think he could have gotten that diagnosis.  You can read about his younger days in this post:  Our Story

I want to focus on where he is today.  I could throw labels at him.  ADHD, OCD, ODD, learning disabled, and cognitive impairments.  His neurologist uses some of these terms as a way to describe behaviors.  But behaviors are symptoms and symptoms have causes.  Either emotional or medical causes.

So far, he has one “official” medical diagnosis.  (actually 2 but who’s counting)  However, he does have another.  His official one is autoimmune post infectious encephalitis.  A good way to explain, in laymen terms, is his body attacks his brain and causes inflammation.  This is the easiest way to explain it.  The more detailed version is this:

There was an infection.  Doctor postulates it was HHV6 (also known as roseola) that was the infection as he has HHV6 and it often reactivates, causing symptoms.  However, as we know, he has toxic mold exposure.  He also has had mycoplasma, which is a leading cause of childhood encephalitis as well.  So to pin down the exact infection that caused the encephalitis is difficult.

Encephalitis is an inflammation of the brain.  Depending on where inflammation is, any number of symptoms can occur.  From mood swings to paralysis and any number of manifestations.  It is autoimmune in nature because even after the infection is gone/dormant, the body continues to have inflammation.  And every time an infection attacks the body, or the original infection is reactivated, the brain becomes inflamed.  With the inflammation, the blood brain barrier is compromised and opens itself to any number of things being triggers to inflammation.  So foods, outdoor allergens, chemicals, and other toxins can cause what I call an episode.

Today, an episode looks like this:

*baby mode.  This is where Trevor regresses to a baby like state.  He talks like a baby.  He will sing baby like songs and cuddle with his stuff animals.

*anger to rage.  He becomes irritable.  He may scream and throw things.  He cannot control himself and it seems like he feels the world is against him.

*depression.  He will get very sad and despondent.

*hyperactivity.  He has to be moving.  Including his mouth.  He makes constant noises, bounces off the walls.  There is not a moment of still.

*cognitive issues.  Trouble concentrating, writing, understanding basic instructions.  Everything just seems harder for him.

*obsessions.  He will become hyperfocussed.  If he feels a Lego is his, and not his brother’s, nothing can change his line of thought.  Or if he wants something, he cannot stop talking about it.  This is far beyond what we can handle.  When he was small, people would tell us to distract him.  There is no distracting someone with obsessions.  And we’ve become very creative with (and scared to say) the word “no.”

Overall, when he’s having episodes, he holds us hostage.  That’s the hardest part; being held hostage by a 10 year old.  He has the ability to ruin an entire day.  He has the ability, also, to ruin a marriage.  If we didn’t have God at the center of our marriage, I’m not sure we would survive what we go through with Trevor.

This is hard to talk about because I know how people who have never gone through this with a loved one think–that we “let” him act like this.  That we “allow” him to hold us hostage and that if we simply didn’t “give in,” that he’d be fine.  We don’t give in.  I’ll tell you that.  Never.  Pick our battles, yes.  Give in, no.  It is hard enough to live this, let alone to have outsiders look in and judge.

His MRI shows this prolific inflammation in his brain.  Along with this, as is sometimes the case but not always, he has a severely weakened immune system.  I can come up with another post later, but the second diagnosis we are waiting on “officially” is common variable immunodeficiency.

Right now to treat this, he is taking medicine to combat inflammation and probiotics to support his immune system.  Besides the mold, HHV6, and mycoplasma, he has severe panisinusitis due to MRSA.  Meaning that every single accessory sinus on both sides is inflamed.  Because of this infection, he is on an antibiotic.  However, this is tricky.  The antibiotic gives him stomach pain, but when he’s off of the antibiotic, he gets worse behaviorally.  So it’s a fine balance.

In May we are taking him to a new clinic that specializes in autoimmune post infectious encephalitis in kids.  Our hope is that they give him an important treatment called IVIG.  This will treat both the AE and the immunodeficiency.

For now, we will live like we always do.  And hope treatment is just around the corner.  Just as we’ve hoped for the past nearly 9 years.