July 2, 2013
Summer Vacation | Camp Biomed
With the 4th of July already upon us, summer is in full swing. And really,
there's no more exciting time of year to a child. Between swimming, camp,
sports, fireworks, and VACATIONS.... nothing beats SUUUMMMMMER!!
For parents of children with autism, there is, like with most parents, slight
trepidation -- how WILL we fill their days? But there's also a certain amount
of excitement. What better time to try new treatments than when there's no
school to interfere with possible healing regressions? Full days to observe
the meltdowns errrr, I mean, perfect outcomes of everything we try.
In our house, we usually approach the summer with a biomedical to-do list.
On the top of our list is scrawled "Camp Biomed" ... which I don't think is
fooling anyone, but attitude is supposedly everything, right?
The camp docket for the Summer of '13 includes: Homotoxicology,
Sublingual Immune Therapy (SLIT), and Low Dose Naltrexone (LDN). Not
quite campfires and s'mores, but we always leave time for soaking up fun
Off to a slow start
At the end of the school year, I set up appointments and we were ready to
begin. Until June 1st. The day before Caroline's birthday. The day she got
sick. It was worse than an ordinary illness. The poor thing was miserable
and the worst part was the PANS (pandas) flare it left behind.
Coughing tics, OCD, handwriting regression, bathroom accidents, all of it
back with a vengeance. She was hating life and crabby. It was not fun.
Definitely not the fun summer memories we planned to make.
Added to the lack of fun was disappointment knowing we couldn't start
anything new until we fixed it. And Tick-Tock, although one school year just
ended, the countdown to the start of Second Grade was taunting us daily.
We began giving her the herbs we've used in the past: Goldenseal, Olive
Leaf Extract and Oil of Oregano. The tics decreased, but didn't subside.
We increased Camel milk. Again, a noticeable improvement, but not
We tried Ibuprofen which helped with her mood, especially on the day of her
birthday party (thank goodness!), but it wasn't enough.
Then, we re-started HBOT and .... voila! After just one session she was happy
again. Face palm -- it reduces inflammation in the brain, which is what PANS
is. So of course it would help. Why didn't we think of it sooner? And why
don't people talk about HBOT for PANS more often? So many questions, so
little time. Tick-Tock...
Thankfully, Camp Biomed was finally underway.
Our initial appointment with Mary Coyle went well. There's a brief blog
about it here. At the moment, I can't specifically attribute anything to
homotoxicology, but we are only on round one and will monitor closely.
SUBLINGUAL IMMUNOTHERAPY (SLIT)
Mary Coyle referred us to Dr. Caprio for SLIT, aka "Allergy Drops." Much like
allergy shots, minus the shot and inconvenience, they are used to desensitize
a person over time. For greater explanation, please click here.
Based on testing, Dr. Caprio is treating Caroline for sensitivities to Malvin
(red colors in food), Piperine, Candida, Histamine, Petrochemicals, and
Chlorine. Over time, with repeated testing, we expect to see her numbers
improve. Many people we know have had great success with SLIT and we
LOW DOSE NALTREXONE (LDN)
Dr. Usman was next up and as usual, she helped us piece everything
together. One very important treatment we've been waiting for the summer
to revisit is LDN.
Naltrexone is a drug that was developed to block opioid receptors. Using it
in low doses causes only partial blocking and the body compensates by
producing more endorphins which helps with immune function. It's been
used successfully for many autoimmune conditions and even in treating
cancer. A more detailed explanation is here.
Caroline was three the last time we used LDN. In her case, I often refer to it
as a social miracle. She had two of the best days we had ever seen. She was
saying hello to strangers on the street, taught a playdate how to play with
her beloved games and much more. It was truly shocking.
Unfortunately, those 2 days were followed by 2 weeks of terrible regression.
Awake much of the night every night and lost months of prior gains. Not
until we discontinued it did she start to improve. And yet, those two days...
we knew there was something to it and perhaps when she was more healed
her body could handle it differently.
We're looking forward to it about as much as week-long mess hall duty.
Dread would be an appropriate word. But if we don't, we'll always wonder
if we missed out on something that may have really helped her.
Summer school ends tomorrow and we will start that night. I'm cautiously
optimistic that July 4th & 5th we may see the return of amazing things.
Who's coming for a playdate??! After that, I'll be praying hard and going to
When the final Taps plays and our camp has ended, we hope to report
some notable gains. We promise the blog won't start with "This one time..."
but other than that, it's anyone's guess.
Until then, may the days at your own Camp Biomed run smoothly. We wish
you all the fun you can handle, many, many happy memories, and no
disgruntled campers or overworked counselors ...and if that last one is
possible, please let us know how you do it!
UPDATE: LDN caused the same side effects and we discontinued it
after only a very small dose for a very short time.
SLIT and Homotoxicology were discontinued after several months of
seeing no results.
We apologize! We had an otherwise very productive and fun
|For future blog notifications:
|Caroline and Jay, on Father's Day
There is a fish on the hook, we swear!
|Balancing the Immune System
More on LDN...
Opioids can act as cytokines - the main
signal and communication network
between cells of the immune system.
Cytokines modulate Th1 and Th2
in the immune system.
Unbalanced TH1 & 2 are often a problem
in autism (and other autoimmune
LDN has demonstrated effictiveness in
balancing Th1 and Th2.