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.
No comments:
Post a Comment