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: negative18.0 – 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
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