Living The Dream

So I figure it’s about time to start catching you all up on where we are with Coleman’s functional healing.  As many of you know, we began our journey to address some of the underlying symptoms of Coleman’s autism about a year and a half ago under the guidance of Dr. Kenneth Bock in New York.  We learned a lot about Coleman that we didn’t know (i.e. Lyme disease, Yeast, leaky gut, allergies, C677T…) and began a full program to begin healing some of the his underlying issues.  (You can read about our initial appointment and early results under the label "Dr. Kenneth Bock" in the column to the right.)    

When we left off last April, Coleman had just gone Gluten Free, and we had gone through what seemed to be a hellish withdrawal.  It was followed by several good weeks, so we enjoyed the early spring,   Then things got ugly again and we seemed to be right back at where we started.  Two steps forward, one back.    We knew Coleman was battling a major flare up of Epstein Barr virus.  Many kids with Autism have chronic viruses that are constantly reactivated.  During flare ups, they have many of the symptoms of the virus, but for kids like Coleman who are unable to express how they feel, it leads to a rather unpleasant situation.  He was unhappy, aggressive, hard to please.  To make matters worse, Coleman had developed a verbal tic.  He would stutter the sound “TCK, TCK, TKC, TCK” NON STOP.  He would use all his breath saying it over and over, and then take in a deep, long breath and start saying it again.  He did this over and over.  It was driving us all pretty crazy.  But Coleman couldn’t help it.  I would say, completely frustrated, “COLEMAN PLEASE STOP!!!”  And he would look me and, as he exhausted his breath on the last “TCK”, he would gasp a big breath in, say “I’m sorry!” and then start over again.  It was exhausting to hear, and exhausting for him to do.  Combined with a surge in his scripting, and the talking to the wall thing that he had started a couple of months earlier, we were starting to feel like all the good gains we had made were disappearing. 

  

To combat the virus, we tried a 60 day course of Valtrex (an antiviral) without any impact whatsoever.  We started natural treatments too but they didn’t help.  Dr. Bock was dismayed.  “His immune system is so weak.”   Blood tests showed things had actually worsened.  The markers for active EBV had climbed higher.  We started talking about immune therapies.  At the same time, Dr. Bock felt that we needed to try an anti-inflammatory.  His concern was that the extent of the virus and Coleman’s inability to control it, was resulting in extensive chronic inflammation.   Chronic inflammation can be anywhere, including the brain, what is also known as autoimmune encephalitis.  He prescribed Zithromax, but told us Coleman would need to have a baseline EKG before he started, and then another after he had been on the medicine for 5 or 6 days.   Apparently a tiny percentage of people have a negative reaction to Zithromax, resulting in cardiac arrest.  I was suddenly less fond of the idea.  He assured us ‘almost never’ is that the case, but they had to check to be sure, particularly if he responded well and the course of the antibiotic ended up going on much longer than the standard 5 day course.  The EKG checks your QTc level – and remember here I am not a doctor, I just play one on this blog J so excuse the simplistic crude interpretation I’m about to give.   The QTc Interval is a representation of the time it takes your heart to recharge between beats or something significantly more complicated than that.  J  In some people, Zithromax causes a prolonged QTc interval, which can lead to cardiac arrest.  Coleman’s baseline QTc was 438, which was considered on the higher end (above 440 was considered prolonged) but still safe enough to move forward.  And since he had been on Zithro in the past, we began the trial that afternoon.  By the following day, Coleman was a different kid.  He was so much better.  It was crazy.  It was unbelievable.  This is amazing, we thought.  We were living the dream.  The short dream, apparently, since Coleman had his second EKG on day 5 and his QTc had climbed to 460.  We were told to stop the medicine.  It was like being given a golden key and then having to give it back.  For a teensy moment, I thought, well exactly how often does this cardiac arrest thing happen?  I’m joking, but seriously, that’s how easy going and happy Coleman had become on the medicine.  Alas, within a couple of days everything returned and he was miserable again.  But Bock was optimistic – he said it helped to know that the med was working.  He needs an anti-inflammatory.  We’ll try others.  Be patient.  So we did and then, finally, far too many months into this miserable phase, we found one that worked.  And within 24 hours of starting, again, things were amazingly better.  All the anger was gone.  And the aggression.  And the anxiety.  And even better, that morning, as Emma came downstairs, she looked at Coleman happily playing on his computer.  She watched him for a few minutes and tip-toed softly over to me and whispered quietly so Coleman couldn’t hear: “The TCK TCK TCK is gone!”  She was right, it was gone.  And it hasn’t come back since. 

It’s been several months now and things are still amazingly good.   And our last blood test showed that the EBV is down 200 points.  We’ve started to add back some of the natural antivirals to go with the momentum in trying to rid Coleman of this virus for good.  At the same time, we’re taking advantage of this sharp drop in anxiety to break some old habits and introduce some new good ones.  So far, so good.  At this rate, it won’t be long before we really are living the dream.  J