Wednesday, 12 February 2014

Nate's Ups and Downs

Nate has been so all over the place the last few weeks.  One day he is repeating words and very engaged, and the next you can’t get his attention no matter what you do- his fingers are far too fascinating.  One minute he is falling asleep on me downstairs at 6pm and before I know it he has climbed into our bed at 1am and stood staring out the window over our bed shouting for hours.  The only way to calm him is to squeeze his legs and feet for like, an hour.  This is all complicated by Jack waking up and insisting he needs me- so I run to the next room to sit with him, and Nate starts stimming again and wakes back up because I have stopped squeezing, and our puppy Darby, who is distressed if I leave the room starts yipping like a maniac.  Night time has never been our strong suit over here, and the past few nights have been nothing short of brutal. 

Seriously though, I went to pick him up today from Cisco, and he looks at me and says “go bye bye”, then says open at the door, up at the car door, etc.  It’s like last night never happened.  He is hardly humming or grinding his teeth at all tonight.  We started him back on antifungals and antibiotics last week after the  regression we saw when we stopped them several weeks ago.  He seems to be showing some “die off “ symptoms….
What is die off?
Die-off is short hand for a Herxheimer reaction (Jarisch-Herxheimer reaction).  This term was coined to describe what Karl Herxheimer saw when he administrated drugs to patients.  The reaction is thought to happen when toxins from dying pathogens (viruses, bacteria, parasites, candida, etc.) overwhelm the body’s abilities to clear them out.
This creates a toxic state in the body which produces symptoms like:
  • fever
  • muscle aches
  • chills
  • headaches
  • skin rashes
  • excess mucus production
  • brain fog
  • Increased GI problems (diarrhea, constipation, etc.)
These symptoms are often reported by many to feel very flu-like or cold-like.  Your whole body is generally sluggish and it usually feels as if your body is working harder, almost fighting something.
The changes that might cause die-off are usually:
  • Switching from processed food to a real food diet (death of pathogens by starving)
  • Starting or increasing probiotics dosage (death of pathogens by good soldiers)
  • Starting or increasing dosage of antiparasitic, anti-yeast or antibiotic (death of pathogens by bombing)
In each of these scenarios, the change in treatment will cause substantial changes in gut flora and knock out a big portion of the bad guys.  When that happens, they release toxins that need to be excreted by the body.

The first time we did an antifungal treatment with Nate was HELL.  This is not an exaggeration.  It was November 2011.  His pediatrician put him on nystatin and warned us that his symptoms might worsen “a bit” if he truly had a yeast problem.  Fast forward 24 hours, he was banging his head on the walls repeatedly, crying continuously, would eat nothing and having nasty, grainy diarrhea.  Sorry, but if you’re going to hang on my blog, you are going to hear about poop.  It’s a huge part of my mommy life.  When these symptoms appeared (on Thanksgiving) my gut instinct was to stop giving him the nystatin.  He was so uncomfortable!  This of course is not the answer- this is one of those it gets worse and then better scenarios.  We had to wait through the symptoms (and give activated charcoal to counter them) and then we saw our first sliver of eye contact since his regression.  The issue has always been that we see improvement on the anti-yeast medications, but the minute we stop, he starts right back down the same path…

We went to see his pediatrician last Thursday to talk about this.  She is not as experienced as Dr. Brenner with these issues, however she makes herself very accessible and is learning with us.  I wanted to discuss Dr. Usman’s protocols and some others that we are reading about right now.  I am very torn trying to decide what direction to take and wanted some advice.  While I still have not decided 100% on what we are going to do, I did receive a tremendous amount of support, which I really needed.  I need reassurance that the symptoms that I keep seeing disappear and reappear are real.  Sometimes, I feel like because I want to see progress so badly, I am not able to be objective.  I rely heavily on his teachers, therapists and doctors to confirm for me that there are changes (both bad and good).  Most often, I am seeing things accurately- it just helps to be sure.  The decision we came to was to buy a little bit of time before intervening with a new protocol or new doctor.  I need to be confident in my next move- most importantly because my children are so very precious to me, but also because any move I make at this point will end up being very expensive for our family.   So we placed Nate back on the antibiotics and antifungal he was on in December when he had his huge burst of speech- he started last Friday. 

And stopped sleeping and started stimming even more on Sunday.  His teacher emailed me yesterday to say he didn’t seem to be feeling well- I am sure she wasn’t expecting me to feel vindicated when I heard this, but I did.  Die off.  Pure and simple.  He will be a mess for a week or two- we’ve been there and done that, but hopefully it will help him engage and feel better overall in the long run.  Obviously we have no plans to keep him on antibiotics and antifungals indefinitely, although you would be surprised how many kids with autism thrive in this situation.  As a friend of mine pointed out the other day (I hadn’t thought about it in a while), many kids with autism experience a decrease in symptoms with fever. 

Dec. 3, 2007 -- Children with autism appear to improve when they have a fever, according to intriguing new research that could lead to a better understanding of the disorder.
Fever was associated with less hyperactivity, improved communication, and less irritability in the study involving children with autism and related disorders.
Anecdotal reports of improvements in autism symptoms related to fever have circulated for years, but the research represents the first scientific investigation into the observed association.
While kids with autism might be expected to be calmer and less hyperactive when they have fevers, the improvement in communication and socialization seen in the study suggests that fever directly affects brain function, pediatric neurologist Andrew Zimmerman, MD, of Baltimore's Kennedy Krieger Institute, tells WebMD.
"The improvement in symptoms may mean the underlying wiring of the brain (of an autistic child) develops more normally than we have thought," he says, adding that the problem may lie with the connections within the brain responsible for sending information.
Continue reading below...
"Somehow fever appears to be changing the ability to make these connections," he says.
4 out of 5 Kids With Fever Improved

So in my mind, this is all connected (of course maybe I'm just nuts).  Fever response is there to kill off bacteria, no?  As do antibiotics?  So why are scientist focusing on how fever response affects the brain function?  Why aren’t they looking at the idea that the fever may actually be temporarily improving a chronic infection?  An infection that the body is not recognizing or trying to fight on its own?  We already know that there is a correlation between strep and autism. 

Does it have to be strep specific?  And how does this relate to other autoimmune disorders.  Ok, sorry, won’t take it that far right now. 

So since we can’t keep him on antibiotics and fluconazole forever (and they only improve the situation, not fix it), what are we to do with this information?  Well that’s where Dr. Usman comes in.  So I am going to continue to research this direction, with several different options out there- even the pediatrician is willing to try a few other options.  In the meantime, Nate’s current symptoms are reassuring me that we are on the right track here. 


  1. I don't know about yeast or all that- Sophie doesn't really have those symptoms. She's pretty steady. Sleeps well, poops like a champ (I can talk poo too lol) and stims only in the evening :) she doesn't really ebb and flow- more like coasts. She is on the gf/cf diet and we noticed immediate digestion improvement so she's been on it for almost 2 years. But what I always wondered about was the fever thing. She is always more engaged, more eye contact, more curious when feverish. It's interesting, isn't it. She doesn't get sick very often, least of all the kids.

  2. I know, the fever thing is freaky- Jack had a stomach thing on monday and he was just sitting quietly "chatting" with me- as in, back and forth, mutually beneficial conversation. for me, I just can't see how this is not all immune related in some way. some piece is still missing, but it just seems like between all of these kids who are on abx so much, regress, DO have the gut issues, have bad reactions to vaccinations (and no, not saying they cause autism) and improve when sick.....maybe it's just me. I just hate seeing glimmers of a different child that disappear and become constant teeth grinding (which by the way, I cannot tune out- the humming is different, the grinding, I don't know how he can even do that)

  3. I think a best thing Natie (and the whole your family) needs a lot is normal, I mean enough in duration and calm, SLEEP. Since, during sleep brain is processing information previously gained and overall improving its daytime functioning. Now another question, how to create conditions for enough sleep him to have. I don't know, may them be restricting unpleasant, overwhelming activities in daytime for him, that is more of rest, more of respite, more (why not) lying in bed doing nothing. From my own experience.

  4. I came upon this illustrated piece of advice how make going to sleep easier for an autistic child: