Birds Nest Catching

Birds Nest Catching

So there it is.   Another year in a nutshell. 

I’m not sure if it’s pathetic or impressive that I could sum up 365 days in 15 short posts, but either way it’s done.  These short peeks are, of course, just that – both the highs and lows are much more lasting than I could easily relate in a couple of paragraphs.  I think the most important fact is that it’s been an incredible year for us, and we look forward to the learning, trials and tribulations that are certain to come.  We’ve only just begun.  

Coleman has indeed made some great improvements this year, but we still have more left to do.  Many of our old habits remain, and we’ll need focused, hard work to overcome them.  For example, mornings remain an overall tough time.  The inherent quick pace of the morning, and accompanying chaos, is simply too stressful for Coleman.  In general, he struggles with multiple activities and conversations occurring around him at one time, but is better able to handle this later in the day, when everyone is finished coming and going.  But in the morning, the buzz of activity is worsened by the impending departure of the girls for school, overwhelming him and setting of daily hysteria.  He starts as soon as he sees the girls on the stairs, and he begins to yell in commander style for them to SIT DOWN!  Literally, he follows them as the come into the kitchen, into the pantry, at the fridge, behind them all the while yelling for them to sit down.  And when they finally sit to eat, he is calm and sits as well.  But the respite is short as morning meals are quick and before he has even calmed down, they are up again, at the sink putting dishes away, grabbing backpacks and heading out the door.  His yelling escalates the entire time.  “Please sit down! Have More! Sit down again!”  He keeps yelling, and soon we are practically yelling at him to stop.  He grabs at the girls, trying to push them into their seats, yelling and nearly crying.  Every morning.  We’ve tried to make the girls sit for a minute before they leave to help him relax. We count out loud so he understands the timing, but in the end, the minute isn’t enough.  Ten minutes isn’t enough.  He doesn’t want them to leave period. So we have not been able to successfully stop this chaos and, as a result, our mornings are what you would call slightly stressful.

We’ve also made no progress on our Supermarket trips which many of you are quite familiar with as you’ve seen him in action.  In all fairness, we haven’t yet even begun to work on this.  Some things you just accept until you have time to address them.  Coleman does not want me to stop and talk to anyone at all at the supermarket.  I have no idea why, but it sends him into a screaming, crying mess.  Someone will see me, give a friendly wave hello, and walk up and ask how things are going.  And Coleman starts his angry yelling “No Goodbye!!!”  He’s such a people person. J   So for those of you that have seen me at the supermarket, to whom I quickly put my index finger to my mouth, signing “Shhh”, until I was up close beside you and whispered to you as quickly and quietly as I could “I can’t talk right now…” and kept moving….  For all of you that have been wondering what the hell that was all about, now you know.    We have more work to do here. 

Much the same holds true when we are out on the bike.  With the warmer weather arriving, we will see more and more folks out and about, much to Coleman’s dismay.  I’ll use this time to say it was good seeing you, and talk to you later.  Because he will be a yelling, crazy, hot mess if you stop us on the street. 

The rain also remains an issue.  When I watch the forecast and it says rain all week, I want to shoot someone.  No, really, I do.  Coleman wakes up and goes straight to the window.  If it’s raining he turns to me and asks “Where is the rain?” knowing full well it’s pouring outside.  I respond “It’s raining a little but it will stop soon.”  I am a liar.  And he doesn’t buy it.  “No!!  Make the rain stop please?!” he pleads.  He continues to ask about 900 times before he leaves for school, only to open the door to see the rain, and sob “No rain please!!!”.  I look up and think Really, Mom, I could use a little help here. But I get nothing.  She must be sleeping J.    So we are still trying to figure out how to better deal with this.  School has gotten involved as well, because there too he is obsessed with the rain.  One Tuesday as I dropped him off, his teacher greeted me, standing under an umbrella.  “Have you seen the forecast?  It’s going to be a long week” she said, defeated.  I nodded I know as I opened Coleman’s door to his voice yelling “Make the rain stop!”   

Coleman’s scripting and his need to repeat words also remains, but I do feel that when things were strong medically after our first round with the antibiotics (the recent ‘glory’ months I like to call them) he did not require nearly as much of this.  Oddly, since the flare up, he repeats everything we say, rather than asking us to repeat it.  Literally every single word.  It’s like living with an echo.  It’s like living with an echo.  It’s funny at first.  It’s funny at first.  But then not so much.  But then not so much.  J   

But at least our goodbye phrase is down to a single set of words.  You may recall from the first year of this blog that Coleman requires us to yell some words or phrase as we leave each other – those words used to change each time.  They made no sense – “Ruby’s Picnic” or “Robot Repairman” or whatever nonsense words he came up with.  As you leave say the words to him, or else whoever is left with him will kill you when you come back.  So one tiny improvement is that we are down to a single phrase at the door.  Ah, not nearly as good as NO single phrase at the door, but I’ll grab onto any small increments of change that I can get.  The single phrase we have to say now is “Bird’s Nest Catching”. Don’t ask because I have no idea what the hell that means. Absolutely no idea.  But that is the phrase. My morning routine now includes falling out the front door and yelling back “Birds Nest Catching!”   I simply don’t drink enough for this.  So when you leave the house, kindly turn back and yell “Bird’s Nest Catching!!”   It’s like Coleman’s version of “Au Revoir!”

There are a great many more things we need to work on, far too many to list here and frankly too depressing.  I’d much prefer to focus on a couple of things at a time.  That way neither of us feels overwhelmed.  And then, in the longer run, we will have made some pretty amazing changes.  Like going to a new school.  Learning to ride a bike.  Eating Gluten Free foods.  Reading words independently.  Playing Ball socially.   Those are some pretty fantastic changes in just one year.  Can you imagine what we can get done in the future? 

Up next is another dietary change – casein free.  This will be tough, but I think it has the potential to be really meaningful for Coleman given the many signs he has of a dairy intolerance.  We’re not really looking forward to it, to be honest, but we know we are going to do it.  And if you know of a good-tasting Alfredo sauce that is casein free, hit me up.   

We also have dental work on the horizon. You can imagine the fun that will be.  We had been going monthly to a dentist in Cohasset (Kristine Grazioso at Children’s Dentistry who is honestly nothing short of absolutely wonderful and whom I highly recommend) to try and get Coleman desensitized to just sitting in the dental chair. We had limited success at best.  Coleman was always super happy walking into the office, talking away happily to himself as we sat in the waiting room. (Although last visit, as we walked in, he stated loudly “Remember this is a dentist office, not a barnyard, so don’t act like an animal.”  Honest to God.  I have no idea where that came from. Other parents looked up at me and gave me the stink eye.)  Then even walking down the hall to Dr. Grazioso’s office, he was all charming to everyone, smiling and working his magic.  But that was where it ended.  As soon as he stepped in her office, gloves dropped and all bets were off.  Dr. Grazioso was amazing with Coleman, despite that he yelled pretty much the entire time, every time.  He always ended his yelling with “No thank you!” and then a sweet "See you soon!"  which always made her laugh.  But it seems my little man is more like a little shark, and despite that all of his baby teeth have not yet fallen out, his second set of teeth have already come in, leaving him with two rows of teeth in a few spots.  Never have I seen such a crazy thing.  So we have to consider a sedated appointment to pull some teeth, get a good cleaning done, and put on sealants.  I can hardly wait. 

And finally, most importantly, we have so much more to do in our biomed treatment.  We are only at the very beginning of the healing process and we have many, many more things to do.  I will let you all know that, three days into the first antibiotic, and Coleman is like a new person.  You simply would have to see him to believe the change.  It’s just that big of a change.  He is even back to reading all his words everywhere, which he had stopped over the past few weeks.  This morning at the library, I went through a "First Words" baby book with him, and he read every page.  Unbelievable.  On the down side, from the flare up we have regressed a bit and now have two new habits to break:  This new talking to the wall thing, for one.  And then the echo. And then the echo.  I’m not sure how we’ll address either one, but we’ll figure it out.  At least he is far more agreeable now.   We also have to finish getting Coleman’s gut in shape, build him up nutritionally, continue to understand and treat the chronic illnesses, and eventually detoxification of heavy metals.  It’s a long road.  It is true that this is a marathon and not a sprint, and we will take it that way.  Slow, steady, meaningful changes.  That's what we are all about now.  I have never felt more sure when I say The Best is Yet To Come. 

Thank you for listening and sharing our journey with us again, and we’ll see you all again next year.    

Until then, Birds Nest Catching. 

Regression

Regression

The next big step for us in terms of helping Coleman was to go Gluten Free.  Gluten Free/Casein Free to be exact, which meant removing all gluten and all milk products.  It is reported that a great number of kids with autism improve significantly by going GF/CF.   And please don’t throw that lame study at me that spread like wildfire across every major newspaper and media outlet last September:  “…gluten free diet doesn’t improve autism symptoms…”  Please.  They had 14 kids in their ‘study’.  14 kids.  How is that scientifically significant?   I could do a larger study just by using kids I know.  And they removed any child from the study that had GI issues.  Wait, what?  That is precisely the issue.  And the test lasted a whopping 4 weeks.  It takes 3 months to 1 year for Gluten to clear from the body so 4 weeks?  Really?   That study single-handedly undermined innumerable kids with autism across the country.  Many parents will now opt to not even try, and that’s super discouraging since most biomed doctors put the percentage of kids that improve after giving up gluten at around 60%.  I’m not saying GF works for all kids.  It doesn’t.  But if you have a child with autism, you sure as hell have to give it a go.  60% is hard to ignore.

That said, I wasn’t looking forward to making the change.  Dietary changes are formidable on neuro-typical kids, let alone kids with autism.  I remember the dread I felt when Emma was going GF.  The ‘This Is Going To Be Hell’ mindset.  Surprisingly, for Emma, it wasn’t.  It took a little trial and error to weed out the lousy products and find acceptable replacements, but after only a couple of weeks, we had the shopping list down.  And Emma herself could feel the difference in just a few days so for her, that was enough to rid herself of gluten forever.  But with Coleman, I knew it was a different ballgame entirely.  With him, that ‘This is Going to Be Hell’ mindset was spot on. 

Given Coleman’s history with the feeding tube and all the work it took to get him to eat orally, I was nervous about making changes and purposely went slowly.  Coleman is self-limiting in terms of foods, and foods even that we used to have, we no longer have.  He refuses to eat them or gags when you try to offer them.  It’s a frustrating reality, and is very common among kids with autism.  Coleman currently has four primary meals:  Waffles, Chicken Parm (with grilled chicken), Chicken Broccoli and Ziti (in alfredo sauce), and Mac n’ Cheese (pasta with milk and a slice of American cheese if you can stomach that).  In other words, Coleman eats Gluten and Casein almost exclusively.  He will nibble (and I mean seriously baby-style bites) of some fruit and carrots, but largely his diet is the four foods above.  The general population is probably aghast at this, but I know how long we worked to even get 4 foods, and I know so many other Autism families have the exact same issues.  Our transition to GF is one step in a much larger plan to widen Coleman’s eating repertoire. 

So, I decided to start with gluten first, and attack casein second.  Gluten would be easier to change, I imagined, since I was having a hellish time trying to find a dairy free alfredo sauce that didn’t taste like cardboard.  And with Gluten, I really had to just change pasta and waffles.  Through our experience with Emma, we had already found a delicious GF pasta that I was sure we could use as a substitute.  So I started by using one tablespoon of GF pasta, and about 5-6 tablespoons of regular pasta.  He never noticed.  We kept that up for a few days and then added 2 tablespoons for a few days.  And then half and half.    At the same time, we were trying GF waffles every day, without success.  I would hand the half-waffle to him (he eats them dry, without syrup) and he would examine it closely and then yell “NO NOT THIS ONE!!” and give it back to me.  No amount of lying to him that it was the same, or trying to fool him would make him eat it.  I tried to wait him out on a few occasions, but he was stubborn, and as a result, he went to school without breakfast for several days.  We tried brand after brand.  I bought three separate waffle irons, all trying to recreate a frozen store bought waffle, but he would have no part of any of them.  Finally, on a last ditch effort, I found a new organic GF version at Whole Foods which we hadn’t yet tried.  I brought it home on a Sunday night, toasted it, and gave it to him.  For the first time, he didn’t hand it right back to me.  As Emma and I spied at him inconspicuously from the counter, he took a small bite.  And then another.  WINNER WINNER CHICKEN DINNER, we found a waffle folks!!  And so Billy went right back up to Whole Foods, bought the remaining 6 boxes they had left in the freezer and ordered a case to be picked up later.  And that Sunday was the last day of Gluten for my boy.  Starting the next morning, we pulled the rest of the Gluten pasta, switched to the new waffles, and we were Gluten Free.  Coleman definitely ate less, but he was eating.  By the end of the week, we were in the throes of Gluten Withdrawal. 

Coleman was a nightmare.  Yelling, screaming, and miserable.  It was a stressful week, but we stayed strong and held ground, expecting to come out of it each day.  But the second week was no better, and school reports began to sound like the early days:  “difficult day, very hard to transition” and “unhappy most of the day”.  By the middle of the third week, I was sure something was wrong. He had regressed back to where we began, even starting to hit again, which he hadn’t done in a very long time.  It seemed, in fact, things were even worse than when we began.  Coleman was scripting more than ever, the OCD was back with a vengeance, and he developed a new habit of getting close up to the wall and scripting as if he was talking to the wall.  He even seemed to have developed a new tic of head nodding.  And to top it off, he was repeating every single word you said.  He said the word “Beach ball” continuously one day for the entire ride to school.  That’s about 2,000 beach balls.  The prior three glorious months seemed to have slipped right through our fingers in just a few short weeks. 

For the first time since we began the biomed, I was worried.  I was ok with not making progress, with not making immediate gains, but I did not sign up for a regression to a place worse than where we started.  I was super nervous, and Coleman’s anxiety was through the roof.  As a result, the entire house was stressed.  I called Bock’s office and left a message.  I didn’t hear back and the next day, out of fear, I stopped all the supplements.  I didn’t think it had anything to do with them, especially since we had been taking them for months by this point, but I just didn’t know what else to do.  I had read a lot about food related regressions, but this seemed worse.  And it had gone on longer than a week.  Bock’s office called back on Thursday, and ordered bloodwork, which we did that Friday.  We already had a previously scheduled appointment with Bock the following week, so we hunkered down and waited for the results and the visit.

On a side note, that visit was actually last Friday so we are practically in real time now!  How’s that for a quick year recap?!  J

We made the trek to upstate New York as part of our April school vacation plans.  You can imagine how happy the girls were about riding 4 hours to a doctor appointment for Coleman.  You can further imagine their mood after we spent $375 to go to Six Flags, and the only ride we went on was the kiddie roller coaster.  Coleman was thrilled, but for the girls it was a total bust.  Don’t even consider going unless you are going to pony up the extra $100 per person for the fast pass thingy, which we didn’t know about until after we has waited in line to get in the park for 50 minutes, only to arrive at the 2.5 hour line for the real roller coaster.  Who waits for that?  Not us.  So all in all, the girls really took one for the team on this trip, but at least we shared some good laughs along the way.  

The appointment with Bock went well.  As we talked about Coleman’s behavior, Bock felt strongly it was a viral flare up, particularly given the OCD and new tics.  In his experience, gluten withdrawal rarely lasted beyond a week.   He ordered a repeat Lyme test to see what kind of progress we had made against the strains (apparently there are several different strains, each treated with a different antibiotic).  In the meantime, he asked us to re-start the original antibiotic we has been on for 30 days at the start.  In addition, because the labs were not yet back from the prior Friday’s bloodwork, he prescribed an antiviral based on his suspicion that he was having some kind of viral issue.

We headed back home, relieved that Coleman’s issues were not a result of the supplements.  It was a long ride back, particularly because it was pouring.  And between the loud, pounding rain on the roof, the thunder, and Coleman’s non-stop yelling for us to make the rain stop, it’s no wonder we didn’t drive off the road.  Intentionally. 

On Monday, I was able to log onto the Children’s Hospital portal and view Coleman’s lab results.  Bock was right.  The Epstein Barr virus was through the roof.  The range for testing is:

17.9  or less:  negative
18.0 – 21.9 :  Indeterminate
22.0 or greater:  Detected.
Coleman’s level:    >750.

So I could spend an entire day writing here what I have learned about EBV over the last 48 hours, and it still wouldn’t cover it.  This is one of those chronic, debilitating viruses that is often misunderstood.  It’s estimated that roughly 95% of all adults have antibodies against this virus, indicating that they were infected at some point in their lives.  For many people, the symptoms are mild and go unnoticed.  For some, there is a sore throat, tender lymph nodes and slight fever, along with fatigue.  This is the most common form of the virus, hitting teenagers as mono.  When severe, you can get hit with about six weeks of fatigue and an enlarged spleen.  Like most infections, the body makes antibodies against the virus to destroy it and prevent its return.  However, in some cases, particularly when the immune system is weak and not working properly (like most kids with autism) the virus takes up residence in your organs and gets continually reactivated, causing a chronic inflammatory response.  In addition, those organs themselves begin to be impacted.  Worse still, some kids, through an autoimmune issue, will make not make antibodies to the virus, but instead make antibodies to the protective myelin sheath covering nerves.  Their own immune system is gnawing away at their insulation of nerves. 

EBV has been associated with the development of serious medical issues including neurological conditions, GI problems, Guillain- Barre, Hodgkin Lymphoma, and autoimmune diseases.  I even saw research that said T-cell cancers have been linked to EBV, which I find fascinating since Coleman had T-cell Leukemia. 

There is a boatload that I don’t know about EBV. I’m working on it.    

What I do know is this:   Coleman is acting recently like he had acted the previous 3 or 4 years: difficult, angry, aggressive.  And all that time, we thought that was just part of being autistic.  And then we saw Dr. Bock who figured out Coleman had several chronic infections, including Lyme and EBV and placed him on 30 days of an antibiotic.  And it was then that we saw Coleman as he really is – a happy, sweet, calm little boy that we so adore. And he stayed that was for a solid 3 months.  Until this flare up. 

What I hate most about this is the realization that for years, Coleman was in pain.  I read that chronic viruses make you feel you were hit by a truck.  The way you feel on the first day of a bad head cold, when your head hurts, your brain is foggy, your body is fatigued, and all you want to do is lie down.  I hate to think that my boy felt that way for years, and that we didn’t know.  I hate to think that we assumed it was all just part of being autistic. 

Yet, this realization is also one the best things that has happened to us.   Because now we know.  And we can help.  Figuring out that piece of the very large puzzle was a massive win for Coleman.

Coleman still has autism – there is no magic bullet here.  But as we treat these underlying conditions, we alleviate pain and inflammation, and give Coleman the chance to be present, to be available for learning.  Only then will he be able to show us what he can do, just like he did a few months ago.  Those days are coming again.  Just you wait.

Our N.Y. Road Trip Pit Stop

Changes

Changes

So nearly everything I’ve read about Biomed healing talks about how long it can take.  The common analogy is that Biomed healing is not a sprint, it’s a marathon.  As such, and to try to harness my expectations, I was very much keeping in the state of mind that we wouldn’t see any serious improvements for several months.  My plan was to re-evaluate after a year, and see where we were.  I really had no plans on abandoning anything, but figured after a year it would be a good time to figure out if we needed to rebalance priorities.  So I was very much surprised when, after only two weeks, I started noticing changes. 

The first was at the library on the morning after I had given Coleman his Methyl B12 shot.  I take Coleman to the library every Saturday morning.  He doesn’t enjoy books at all, despite various attempts at including them in one of the many nighttime rituals.  I started the library trip as a means to get him used to sitting and at least looking at a book.  On our first trip there were a lot of loud “NO THANK YOU”s and “ALL DONE”s but after a few weeks, he adjusted to calmly sitting through a short story.  Still, some days he barely looks at the book, instead looking away and scripting on about some show he had watched earlier.  I have to redirect him, closing the book and getting him to stop and look at me.  “I’m ready” he finally states and we open the book again and go on for another couple of pages, until he inevitably starts scripting again and we repeat the process. 

On this particular Saturday, Coleman seemed more ‘up’ than usual, and instead of his leisurely (super slow) saunter up the path to the library, he moved at a quick pace to the door and up the ramp to the children’s section.  Once there, he was unusually attentive to the book.  He would stop me before I could turn the page and stare up close at the words, examining them like it was the first time he could see.  He pointed to the words, looked at me to read what it said, then stared back again at the word.  He did this for several pages.  I only had to redirect him once or twice throughout the entire thing.  It was an absolutely noticeable change.  I thought about the B12 he had that morning.  Interesting, I thought.  Then we headed down to the coloring table.  We took our seats at the table and I started helping Coleman draw a stick figure.  He can almost do this on his own now, we’ve done it so many times together.  As we were working on it, a little girl came to the table and sat across from Coleman.  He stopped coloring and stared at her.

“Hi. What’s your name?” he asked.

Oh, how I pray you can understand the magnitude of this.  Thank God Abby was with us this day so I had a witness.  She looked up as soon as he said it and stared wide eyed at him and then at me.

“I’m Emily” the little girl answered.   

“Hi Emily” Coleman said back.

“What’s your name?” she asked him.

I looked at him, incredulous, staring, anxious… and my little man who has never had a back and forth conversation like this with anyone, who has never initiated such a conversation, who has never responded appropriately without prompting, simply said “I’m Coleman.”

Sound the goddamn trumpets everyone because shit just got real.  A true honest-to-God back and forth conversation that lasted a precious 10 seconds or so.  Abby and I stared speechless.  Literally.  It was all I could do to not get up and hug that little girl.  And I was praising Coleman so much for the amazing job talking that the little girl probably thought I was a little wacky anyway.  And as we got up to leave, I was so distracted that I left his paper on the table.  Emily came running over to us with it.

“You forgot your picture, Coleman” she said, handing him the sheet of paper.

“Thanks Emily” he responded as he took the picture from her.

 And that, my friends, was the moment that I knew we were on the right path.

 We saw so many things over the next few months that I could hardly believe the changes. There were many far more subtle changes than drastic, but still some were just as surprising as the library visit.  His focus on words and letters came alive, and he was suddenly stopping anytime he saw words to try to read them. In the supermarket, he tugged at my arm. “Fresh?” he asked.  I was confused and asked him to repeat it.  “Fresh…” he said again.  “Fresh what?” I asked confused.  He pointed above my head.  On the wall above the bakery it said “Fresh Bakery”.  And so began his reading of words.  Never once had he so much as noticed a giant banner hanging, and suddenly, I couldn’t go down the aisle in the supermarket without stopping every 10 seconds to read words to him.  It was that sudden of a change.  We now try to find words whenever we are out, pointing to signs and store names, asking him “What does that say, Coleman?”  He stares at the words, really trying to figure it out. And I’ll tell you it was pretty damn shocking to see how many words he could actually read

His expressive language seemed to get a kick start as well, and he would say things that encompassed multiple thoughts, something he had never been able to do in the past.  For example, on the ride back from New Hampshire one Sunday, he called from the back seat, “Bathroom?” which meant he had to go.  “Ok, bud, I’ll stop at the next exit and you can go.”  Satisfied, he returned his attention to his DVD, and a few minutes later asked “Max and Ruby?”   He was watching a different show and he wanted Max and Ruby.  “Ok, give me the DVD” I said as I reached back, intending to swap out the DVD.  He looked up and said instead, “It’s ok.  You can change it when you stop.”  Those Exact Words.  Oh, how hard it is here to express the meaningfulness of such a statement, how hard those thoughts are for him to verbalize.  How he could not only understand we would be stopping soon, and that we could change the DVD at that time, but also that he could also put those thoughts into words, and that he was ok with waiting until then.  Trust me when I say it was striking.  Abby was sitting beside me and after he said it, she said “Wow, that was impressive.”  And it was.    

He also was more engaged, more interested in what was going on around him, and that became apparent in many daily activities.  But over Christmas, it was unmistakable.  Never a fan of presents, he refused to open gifts in the past. We never knew exactly what he didn’t like about it, but at birthdays or Christmas he would run out of the room or just yell “NO THANK YOU” when you tried to get him to open presents.  So this year I only wrapped one or two of his gifts.  And on Christmas morning, I regretted it.  As we opened gifts, we asked him if he wanted to open one and he smiled.  He opened that gift and was talking about it all the while.  “What is this?” he was saying.  And when he got the wrapping paper off, he exclaimed with excitement “It’s a box!”  And when we showed him that he had to open the box, and there was gift inside, he did so and was super interested in all of it.  He didn’t care much for the actual gift itself, but for the first time ever, he actually wanted to participate in the activity.  It was the best Christmas present for all of us. 

Above all, the most drastic and noticeable change in Coleman was the overall reduction in his anxiety.  This was a game changer.  Even in school, where they track the number of aggressions and tantrums Coleman has on a daily basis, there was a noticeable difference.  He went from 10.7 aggressions per day when he started, down to 5.0 before we began the supplements.  In January –March, he averaged just 1 per day.  And zero tantrums.  ZERO.  His School/Home Journal came home every day with comments like “Great day again”, “Excellent work at the desk”, “Great mood”.  And we saw the same thing at home.  It was like someone had ratcheted down his internal meter exponentially.  Every night I found myself saying “I can’t believe how low key he is!” and saying to Billy “Isn’t this great?  He is so happy.”  I think the reduction in stress across our household declined ten-fold.  We all lived a little better during this time.  We were even able to start eliminating some of the unproductive OCD habits.  We approached this slowly but made meaningful progress.  For example, we started with one of the before-bed OCD routines of touching all the corners of Emma’s bed.  We said “Tonight you can touch them, but in 2 more days we won’t touch them anymore ok?” He paused.  “In two days I won’t touch them?” he asked.  “Right.  You can touch them tonight but in two days we’ll stop.  You don’t need to touch them anymore. You’re fine!” I said optimistically.  And the next night we repeated it, and said “One more day and then no touching” and on the next night, he looked at me as he approached Emma’s bed and asked “You don’t need to touch them?”  “Nah! You’re fine!” I exclaimed like this was some great piece of news.  And that was the end of that.  This was simply not possible before. 

We used the same approach to break out of the “Go that way” habit he was so deadlocked into.  You might recall how he would completely melt down if we drove a different way home, sending Coleman into hours of unstoppable hysteria.  With this new Coleman, though, I thought we had an opening. “Today we’ll go that way, but tomorrow, when we go to gymnastics, we are going to go this way, ok?” and I pointed the opposite direction than we normally took.  I reminded him of that plan as we drove to gymnastics the next day too and after gymnastics, as we approached the dreaded intersection, I reminded him again.  “Remember, today we are going to go this way.  It’s really fast!  Later we can go that way again.”  And I held my breath as I turned right onto Main Street.  But my amazing, calm little man just repeated me.  “We can go that way later.”  And again, that was the end of that.  Now I drive down Main Street at least once every week to keep it alive for us.  Two OCD habits down, about one hundred more to go.  J

So the changes are absolutely real.  Perhaps they sound small to you – I don’t really know – but to us, well, these are mountain-moving kinds of changes.  So we are keeping on this path, cautiously but resolutely moving forward.  We have a long way to go, but we can do this.  We will do this.

The Results

The Results

We had our follow up with Bock as scheduled several weeks later.  Turns out there was quite a bit not working properly in our little man.

For starters, he tested positive for Lyme disease.  I have since learned a bit about Lyme, and in particular the testing.  The CDC (you know how I feel about this organization) currently recommends a two tier testing when Lyme is suspected:  first an ELISA to screen for the disease, and then if positive, to confirm with the Western Blot.  The first problem is that the ELISA screening is often done too early:  during the first four to six weeks of Lyme infection, most people have not yet developed the antibody response that the ELISA test measures.  The other problem is that even later in testing, the test is still extremely insensitive, and fails to identify patients with Lyme 54% of the time!  Even the College of American Pathologists found that ELISA tests do not have adequate sensitivity to be used for screening.  So why are we still using it?  Why the lovely CDC recommendation of course.  So now you know.  If you suspect Lyme in your children (if you find a tick on them, particularly if the tic is engorged, or you see the red rash afterwards), demand the Western Blot test. 

He also tested positive for Epstein Barr, the same virus that causes Mono.  And Coxsackie virus.  In addition, he had more the two times the normal level of yeast in his system.  He was significantly low in several vitamins including B, D and A.  He had low sulphation and was quite low in glutathione (body’s chief detox agent).  He had abnormal gut bacteria, inflammation, and was on the upper limit for metabolites in his urine (leaky gut).  He also tested positive for Folate Receptor antibodies, indicating a lack of cerebral folate (CFD).  Finally, to our surprise, we found out he was allergic to peanuts and soy.  Jeeeesh.  Billy and I felt terrible.  How badly must have out little man have been feeling?  We had no way of knowing.

So all that bad news was also the good news because it meant there was a lot that could be done.   We started immediately on an antibiotic to combat the Lyme and the other chronic viruses.  “This may very well help with the OCD as well” Bock told us.  For a lot of kids, Lyme disease coincides with sudden onset OCD.  And the timing would have been right for Coleman – his OCS started in the summer when tick season is high. 

We also started on Nystatin for the yeast.  I knew that he would be positive for this.  Yeast is a fungus and it is believed when there is an overgrowth, children can have fog-like, low energy symptoms.  Coleman is very much like this – if he is doing almost anything (besides watching his shows, during which he is quite lively) he is the slowest human being you have ever seen.  I had been secretly hoping this would be positive – only so that maybe with treatment, some of Coleman’s spacey-ness would lift. 

We also started to address the Cerebral Folate issue.  Folate is critical in the replication of new red blood cells, particularly early in life when cells are growing quickly. Due to the blood/brain barrier, for folate to enter the CNS (Central Nervous System), it must be carried across by Folate Receptors.  Folate binds to the Folate Receptor on one side of the blood vessel, and is released on the other side, into the CNS.  The Folate Receptor then is recycled to go back and pick up more Folate.  However, in some kids (a high percentage of kids with autism), antibodies bind themselves to the Folate Receptors, causing them to become dysfunctional, and this starving the CNS of the critical folate.  Without folate, cells can’t grow or function properly and can lead to cell death.  Many kids who remain untreated begin having seizures.  I’m obviously simplifying this highly complicated molecular scientific process, but given the associated complications, this was an area I was hot to address.  I knew a lot of children with autism that had seizures, and for most of them, it started during puberty.  Coleman is fast approaching that point.   I was also concerned because Folate Receptor antibodies were also found to be associated with juvenile rheumatoid arthritis.  My mother had severe rheumatoid arthritis and I remember well the life-long pain associated with it.    For Coleman, we started a regimen on this involving methyl B12 and L-methylfolate.  The methyl B12 is a shot, given every 3 days.  It is the easiest of all of the treatments to give – nothing to try to get him to swallow, and the needle is tiny, and a subcutaneous injection (just into fat, right below the skin) is not painful.   He takes it easily.  The methylfolate is a capsule, given several times each day. 

In addition to all of that, we started on a slew of other supplements as well, including vitamins D and E, Biocidin, Monolaurin, Magnesium Citrate, as well as a few homeopathic remedies for constipation.  And we still had the omega oil and probiotics as well.  I was brought back to the Chemo days when we had to keep a chart of exactly what medicines Coleman had and at what times.  Today we have a chart for Coleman with dates, times and supplement notes that is more complicated than any of his chemo spreadsheets. 

The hardest part of it all is getting the supplements into Coleman, given his very tiny food repertoire.  I refuse to mess with his food, and will not mix anything in it.  I feel very much like the biggest mistake we made during the chemo days was trying to hide the medicines in his food (even though that was what the doctors told us to do.)  Maybe Coleman was unlike other kids, but the saying  “he will eat when he gets hungry.  He won’t starve”, did not apply to him.  He flat out stopped eating.  And when he lost more than half his body weight, we had to go to a feeding tube.  But by then, it was too late in terms of getting him to eat again.  He strongly associated food with bad taste and vomiting, and he wouldn’t even so much as lick anything.  For over 5 years.  So, now, after years of feeding therapy, he actually eats a few things, but only a few.  And I can’t risk losing them.  So we are treading very, very carefully over here on this stuff.  I’m using juice a lot more than I’d prefer, but it’s a placeholder for now until I can figure out a better way to get them into him.  So far, pretty good.   We’ve had a few mishaps, like figuring out that we can’t give him the supplements before school.  He doesn’t eat much early in the morning, and apparently, if taken without food, omega oils will make him vomit all over himself.  In the car.  On the highway.  In rush hour traffic.  We stopped giving him that one in the morning pretty quickly. 

I’ve joined a few Facebook groups of parents all working toward the same goal of healing their children.  That has been helpful.  And I’ve met several people locally who are actively managing the same process – it’s wonderful to have people to learn from nearby, friends to commiserate and compare notes with.  Like my friend who turned me on to all of this with her suggestion of getting the Bock book.  As for her son?  Three years in, they are, and he’s nearly fully recovered.  It can happen.  It’s happening every single day around us.  There is hope. 

The Appointment

The Appointment

The appointment crept up more quickly than I had expected and before I knew it, Billy and I and Coleman were in the car driving for our overnight trip to “see my friend” (as we told Coleman) in New York.  We had to be at his office at 9 am for lab work and Coleman couldn’t eat for 12 hours prior so we drove up the day before and tried to make it seem like an adventure.  We stopped at a rest stop once we hit New York and took the token NY picture for you all J  He was great in the car and perfect at the hotel, amazing when you consider the girls were not with us.  And in the morning, when he asked for breakfast, we acted all surprised that we didn’t have any waffles, angrily stomping around the room saying “Coleman where ARE they??!!  We better go buy some!” He bought this charade, and laughed as we headed out the door.  I explained that we had to first stop at my friends place so they could “look at his blood – it’ll be a little pinch on your arm.  Very quick”, and then we would get some waffles.  He was ok with this plan until we got there and he panicked over the blood draw.  Although it took three of us had to hold him down, once they got the needle in he was very, very patient waiting as they filled 13 vials.  Being the good, Clampett family that we are, we brought our toaster and waffles with us, so as soon as he finished, we asked to use their kitchen, plugged in the trusty lifesaver, and gave him his waffles.  And all was good.   

The appointment was at 10:30, and we didn’t leave there until after 3.  You would not believe how good Coleman was.  A total champ.  I know my mother was there that day, helping us again.  J    

It was interesting to be in front of Dr. Bock.  He was kind and quiet, and well versed in common autistic symptoms and behaviors.  He was the first doctor I had been to that I felt really understood Coleman, and that gave me a great sense of confidence.  More than that, though, I was beginning to feel hopeful. 

Bock had asked us to prepare a timeline prior to our arrival and he spent a great deal of time going over that, going through Coleman’s history, asking questions, making notes, and asking more questions.  He put several events together that we hadn’t, and after a couple of hours, he put down his pen and told us his thoughts.  He felt fairly confident he could take care of Coleman’s OCD and substantially reduce his anxiety.  He also added that he thought he could help with Coleman’s GI issues, get him off the Miralax, and hopefully help eradicate some of the fog he seemed to dwell in.  And if all of those things fell into place, the structure and teaching he was getting in school and at home would be absorbed more readily and we should see good progress.  He had only one word of caution: age.  “If Coleman was three or four years old, I would say we have a pretty good shot at recovering him.  But he’s nearly 11, and I just don’t have enough history with kids his age to predict a fully successful outcome.  But I know we can make some meaningful progress.”  To be honest, he had me at OCD improvements.  Anything above that, well that was gravy really.  Our biggest issues on a day to day basis involved the OCD and anxiety.  Even in school, the most difficult parts of Coleman’s day still consisted of breaking fast-adopted, non-productive OCD driven routines.  So Bock could have stopped right then and I was in.  And as for age, I wasn’t discouraged.  He didn’t say it wasn’t possible.  He only said he didn’t see enough kids Coleman’s age.  And I could believe that.  Although biomed has been around more than 25 years, in the last 10 years there has been an explosion of growth, due in part to the growing body of research linking gut health and food intolerances to brain health, as well as increased awareness due to the rapid expansion of social media and celebrities like Jenny McCarthy.  But for parents with older autistic children, they already tend to think “it’s too late.”  The idea of trying to change eating habits and add supplements is overwhelming in a child that is a teenager.   But for parents of younger children, the changes are less formidable – it’s certainly easier to start new habits than to try to break long term, old habits in teenage children.

So I hung onto the good news, put the ‘age’ issue on the back burner, and focused on the plan Bock was presenting.    Given Coleman’s complicated medical history, we all agreed that casting a wide net in terms of baseline testing was the way to go, so we did broad, comprehensive blood work and stool samples.  Bock provided a short-term plan until the results came in, largely aimed at starting to heal Coleman’s gut, with some basic supplements, a probiotic, and omega oils.  “Let’s see what we get in the lab work, and then we’ll formulate an action plan.”   We scheduled a follow-up for 6 weeks later, and oddly, I found myself hoping that the blood work would come back with all sorts of problems.  “What if everything comes back completely normal?” I asked.  Bock answered without hesitation.  “It’s not game-over.  There are many paths we can take.  But I don’t think that will be the case.  I think we’re going to find plenty of things to work with in his results.”  And he was right. 

The Book

The Book

Not that long ago, a good friend called me after her young son had been diagnosed with autism.  She was crushed.  “What can I do?” she asked.  I stared into the phone.  Not much I thought.  “Get him in a good ABA program” was all I offered lamely.  It was all I had. 

She called me again several months later.  “Have you read the book on Autism by Kenneth Bock?” she asked.  I laughed to myself.  I was so deep under water that reading a book seemed like a luxury I would never enjoy again.  We had our plate full with Coleman’s behavior problems, OCD challenges, melt downs, and rigidity.  His issues made finding an appropriate baby sitter a challenge, and so our social life was also limited.  We also had Emma’s diabetes and corresponding doctor visits, busy academic and athletic schedules for both girls, and, with both Billy and I working full time, well, we were barely treading water.  “No, I haven’t heard about it” I replied instead.  She told me briefly about the book, and mentioned she thought it could help with her son.  “You should get the book.  It’s pretty interesting” she said. I hung up the phone and went on the computer to Amazon.  I googled  “Autism and Kenneth Bock” and sure enough the book came up.  “Healing the New Epidemic:  Autism, ADHD, Asthma and Allergies.”  I read the summary and thought about it.  I put the book in my cart and closed the computer just as Coleman began to scream because Emma had shut off the bathroom light. 

Another 6 months went by and I hadn’t bought the book.  It was still in my cart but I kept checking the “save for later” button any time I placed an order.  My friend called again and she casually asked if I had read it.  “Just ordered it!” I lied.  I hung up, went online and ordered it.   In two days the book came, and for the next week, I couldn’t put it down.  I was writing notes in the margins, placing post-its on pages, and I dog-eared so many pages that it would have been easier to dog-ear only the pages that I didn’t find important.  That book.  It single-handedly changed me.      

The book is written by Dr. Kenneth Bock, a well-known physician with more than three decades of experience treating patients via “alternative” approaches in medicine.  His expertise surrounds complex, multi-symptom disorders, including Autism.  His approach to autism begins with a belief that autism is a disorder caused by a combination of lowered immune response, external toxins, and problems caused by certain foods.  The treatment protocol commonly includes nutritional supplements, special diets, testing for hidden food allergies, treatment of intestinal bacteria and detoxification of heavy metals.  Sounds wacky, right?  That’s what I thought too. 

Wacky, but fascinating.  He tells story after story of his patients, explaining in detail his thoughts about their symptoms and his multifaceted approach to treatment.  It’s clear that the treatment process is not easy.  He talks a lot about being like an investigator, testing and examining blood results, testing and treating, and repeating it all again, trying to fix one by one each piece of the complex puzzle.  Later, I heard a talk given by another biomed doctor.  He used this analogy:  think of your body like a high tech manufacturing line.  If even one small part breaks, then the machine isn’t going to work.  Figuring out exactly what isn’t working right and how to fix it takes time.  And trying solutions takes time, because the same solutions don’t work on all kids.  But, the important point is that some solutions do work.  And work quite well, it turns out. This approach to treating autism, when combined with behavioral and educational interventions, has actually ‘recovered’ hundreds or thousands of kids from Autism.  In a great many others, it has led to significant improvements.  

I found it particularly noteworthy that Coleman shared a similar history and experienced many of the same symptoms as the kids included in Bock’s book:

·         GI Issues -Coleman has a very long unexplained history of GI issues, including reflux, alternating constipation and diarrhea.  He was tested for Hirschsprungs Disease at about 6 months of age due to his inability to have bowel movements.  He was hospitalized for a week when he was about a year old due to a 7 day fever and enlarged intestine, the cause of which was never determined.  And due to nausea related to the chemo during the Leukemia, he stopped eating entirely and had a feeding tube placed.  G I issues?  Yeah, we got that. 

·         Gluten/Casein intolerance – the theory is essentially that children with autism cannot completely digest some proteins (specifically those in gluten and casein) resulting in undigested proteins, known as peptides, that pass through the intestinal membrane and enter the CNS.  These peptides have an effect like opiates (morphine) in the brain and nervous system, causing disruption to normal neuroregulatory processes.  Long term exposure can have damaging effects on the developing brain.   I didn’t know if Coleman had this issue, but I knew one thing:  Coleman ate a lot of gluten.   

·         History of high antibiotic use - The possible link between antibiotic use on children with low immunity and autism is something I’ve now read about over and over.  Some – not all - kids with low immunity have a difficult time shedding the toxicity and metal from medicines.  Coleman certainly had more than his share of antibiotics.  He faced many bouts of illness, both test-confirmed (bronchitis, strep) and non-test confirmed (asthmatic episodes, aforementioned GI issues), and was treated every time with antibiotics.  And then there was the oh, lets round it out to three years, of Chemo and steroids.  He has even had lifetime doses of some medications.   He can never, ever have some of the medications he had during those three years again in his life because, before he was three years old, he had already had the lifetime allowable dose.  Seriously.  And clearly, since the entire chemo process is to kill of the cancer cells, which at the same time kills off healthy cells, yeah, you could say he received those drugs during a low immune time in his life.  And this is not to mention all the radiation.  To his head.    I was starting to now wonder what effect all of this had on Coleman and if any of it contributed to his autism.

·         Yeast Overgrowth:  I wasn’t sure if Coleman had this, but I was willing to wager a substantial amount of money that he did.  Yeast is present in all of us, and is considered commensal (neither beneficial nor harmful).   But overgrowth of these organisms can have many detrimental effects, including asthma, allergies, eczema, complications in the GI tract, and broad immune suppressive effects.  There have been cases when clearing yeast overgrowth alone is game-changer in terms of progress for kids on the Spectrum.  The first case involved a young girl with autism.  Her parents took her to the doctor for a white film they could see on her tongue.  It was thrush and the doctor ordered Nystatin.  As expected, the girl’s thrush cleared but remarkably so did her autism.  Word among the biomed community spread quickly and soon many biomed doctors began to add this to their regimen – test for yeast, and if higher than normal, treat it.  Coleman had countless cases of Thrush during his chemo days, and still we get the ‘white tongue’ from time to time.  He also has a substantial amount of eczema on his body and arms.  And we fought cradle cap on his head until he was five or six years old.  All signs of too much yeast. 

·         Sudden onset OCD:  Yup again on this one.  Summer of 2012.  It was really when Coleman changed from his easy going, happy little guy to suddenly needing to touch every corner, walk a certain way, go through a certain ritual, repeat exactly what was going to happen in the next hour (again and again) and it was the first time he really hit anyone.  It started suddenly and at first, we thought it was another quirky way of his.  But it very quickly escalated.  His need to touch, move, stand, and repeat things became intense, and the inability to do so set off tantrums and meltdowns, the likes of which we hadn’t seen previously.  It was also the start of problems at school.  Upon his return that September, he began to aggress against teachers and aides when he couldn’t fill his OCD needs (i.e. No you can’t touch every plug outlet as you walk down the hallway).  When the school first told me about his aggression, I honestly did not believe them.  He doesn’t act like that, I thought.  That is not him.  But it had become him.  Seemingly overnight.

There were so many parts of the book that I identified with, I couldn’t possibly list them all here.  I kept stopping and saying to Billy “You have to read this.  You will not believe how much these kids are like Coleman.”  I couldn’t stop thinking about the book after I had finished it.  Could this possibly be true?  The man was a well-respected doctor.  But still.  It really had me thinking.  What if?  I went online and found hundreds and hundreds of stories of people that followed the biomed approach whose children had ‘recovered’.  For many more, they reported major improvements.  And for a great many, they were still hard at work trying.  It didn’t take long to decide.  Within a week of finishing the book,  I made the call to Bock’s New York office.  I took the first available appointment, 4 months later.  And then I waited and prayed.