Hi everyone!
I just wanted to give you an update
about a big change of events for our family, more specifically
pertaining to N. Before I start to hash out the details, I just
want to let you know I'm sending you this email because you're
either family, close friends, and/or because you or your loved one is
dealing with a spectrum disorder (ADD,ADHD, PDD-NOS,Autism,
Aspergers) or you're dealing with a chronic fatigue/Fibromyalgia situation. All that
being said, let me get on with the point of this email. I know it's
a long one, but please bear with me. I think it's definitely worth
the time.
Pretty much all of you know that N
is on the Autism Spectrum. We've never had him officially diagnosed
with anything beyond sensory integration disorder, but we've done the
preliminary screenings with the behavioral psychiatrist (the first
part in the diagnosis process in Alaska) and he confirmed that N
is textbook spectrum. We have avoided getting the label on his
medical record because 1) he was still able to receive all of
the services he needed without it, 2) we have a personal
issue with how this spectrum is unending and 'they' just keep adding
everything to it and then acting surprised that more people are on
the spectrum, and 3)N was normally developing for the
first 6 months of his life, and has continued to be extremely social
and interactive which is complete opposite to classic Autism. I had
researched many of the alternative therapies while pushing him
through the traditional therapies, but most of the other therapies
seemed sketchy, expensive, or downright dangerous. We just kept him
in speech and occupational therapy hoping that everything would
someday click and he would suddenly be aware of the social nuances
that kept him from being able to fully participate in our society.
Unfortunately this past Spring, N finished the last of his
speech therapy. While we were excited he no longer qualified for
needing the therapy, he still hadn't socially 'clicked'. Thus, our
joy at how far he had come was tempered with a feeling of
hopelessness for his future.
A couple of weeks ago, a person posted
an article from the NY times on a local facebook page. It pertained
to the link between spectrum disorders and auto-immune diseases.
There are many theories still being researched about this link, but
it is understood that a high number of recent ASD diagnosis are
probably related to an auto-immune disorder, either passed on from
the mother, genetic predisposition, or otherwise triggered. I had quit doing research a long
time ago because I was simply overwhelmed or skeptical, but I now
felt compelled to resume my search for helpful information and new
treatments. That has led us to this site: Neuro Inflammatory Disorder
(http://www.nids.net) and the doctor behind it, Dr. Michael Goldberg.
Without getting into too much detail, I will just tell you a few big
points that stood out to Brent and I about this doctor's approach to
treating ASD. Please browse his site and definitely watch his
interview clips! Also, his book is EXTREMELY informative, and I would
definitely recommend it as a must-read for all family members who
have a loved one with one of the conditions listed above. (Note: It
is available in the Kindle lending library on Amazon.com for those
members of Amazon Prime.) He is trying to lobby the medical
community to his approach, and it is slowly gaining acceptance (or at
least review), but his biggest hurdle is the big Pharma. companies
that underwrite so much of the med. community and also produce the
various drugs used to treat these conditions. Anyway, here are some
bullet points of his research:
1) In Classic Kanner's Autism, the
child was never
socially engaged. Almost all of the new diagnoses are children who
once were interactive and normally-developing, but then stopped and
regressed. Even though these kids really only share a handful of
symptoms as Kanner's Autism, rather than find a new, more appropriate
diagnosis, the medical community just continues to lump it under this
growing umbrella and treat it as a psychiatric disorder versus a phyisical, neurological one that could be treated medically.
2) From doing NeuroSpect Scans of
these childrens' brains, they were able to see areas of decreased
blood flow in the front temporal lobes-the areas responsible for
social skill development and gross-motor skills. (Lightbulb!) They
have found that this is related to inflamed neuro tissue due to
silent viruses or fungus overgrowth in the immune system and/or
allergies. Also, many of these kids experience low serotonin levels
because of the Re-uptakes being out of balance. So in some cases, a
very low dose of an SSRI has helped them to re-balance the
inflammatory tissues along with diet and other
anti-virals/anti-fungals.
3) Through treating his wife in the
90's for Chronic Fatigue and Fibromyalgia (no one could help her for
years so he began to investigate his own methods), he found from
doing Neurospect Scans of the brain, that the areas of her brain
being affected were the exact same as the ones for the spectrum kids
he was seeing. After helping her to recover, she told him that it was
like she had a bad head-cold and was so foggy she could barely
operate. If these kids only know this state of being as their
normalcy, then they are sadly unaware of the potential for clarity.
No wonder they have a hard time learning new skills if they are in a
state of a bad head cold all the time!
4) He practices sound medicine and
does not recommend many of the questionable practices going on in the
natural realm today. His experience w/ the hundreds of kids he has
treated is that many of these procedures make the problem harder for
him to work on later. These kids tend to improve for a time, but the
chelation, mega-dosing of vitamins, etc. actually skews the immune
system even more and then they 'stall out' in their development
again. He is not anti-traditional therapy, but does not see the
point of it if the child's brain isn't healed to be able to fully
learn. However...
5) He is still open to some of the
things that the traditional medical community still shuns-such as
testing and treating for yeast overgrowth (candida and such), and is
a big proponent of a grain-free/dairy-free (Note: NOT gluten free,
casein free, but ALL grain and dairy) because of the way our bodies
react to our chemically different grains that we produce today. You
can see his reasons behind this theory on the website under the "Nids
Protocol: Step 2" tab.
6) From all the people his office
has seen, he has derived the theory that depending on the age in
which these symptoms manifest dictates how
they manifest and thus, which diagnosis you'll receive. If you're a
toddler/young child you'll likely have the new Autism. If you're an
older child or teen it would be ADD or ADHD, and if you're an adult,
then probably chronic fatigue or Fibromyalgia.
There is so much more to say, but
PLEASE read his site and if possible, his book (Just skim the intro
and first few chapters which are very technically written to lobby
his colleagues. The rest is more for the lay person.) It has been a
very emotional few weeks for Brent and I: hope mixed with guilt,
doubt mixed with peace. My prayer has been "Lord, I don't want
to put my faith in a man, so please shut the doors if this is not
truth, and open them wide if it is your will." Well, let me
just say the doors are flying open so quicky it's hard to keep track!
For one, I have an adult-friend who was being treated for chronic
pain and fatigue for over 7 years before finally being healed after
her illness began being treated as an auto-immune disease, and being
put on a grain-free diet among other things. Without her knowing
what I had just been reading, she told me "Hillary, I could
barely function I was in such a fog. I was so mentally out of touch
with my own body that I couldn't even tell when I had to go to the
bathroom and was wetting myself." For those of you close to a
spectrum person, you'll know that toileting is a very common problem!
Other doors that have been flung open
are that our pediatrician is cooperating in helping us get the
referrals and bloodwork we need up here so that more of it will be
covered by insurance. N had a huge syringe of blood drawn
yesterday (poor boy!) to run many of the various panels and
screenings that Dr. G recommends. Also, we found out that Providence
Hosp. in Anchorage just started doing the Neuro Spectscans up there
and will bill our insurance directly so we won't have to front the
thousands of dollars that we thought we would if we'd gone to Seattle
or LA! Since they are in the network, that will also cover all of
our travel up to Anchorage to have his scan done! We will still have
to pay for the travel to LA and for his appt. at Dr. Goldberg's
office at the same time that we are trying to save money to get out
of the CG, but we are trusting God for that provision since His
timing is perfect. :)
So, as a family,
we have purged ALL of
the cupboards, pantry, and freezer in order to follow the elimination
diet the last few weeks. Let me tell ya, this Italian is missing her
pasta, but if it's for my kid, then bye bye fettucini! lol I am
spending soooo much more time in the kitchen cooking EVERYTHING from
scratch, and on-line looking for recipes, which is why I'm not
facebooking, emailing, or calling anyone lately. We are missing our
old standbys, but we are finding new favorites! Praise the Lord for
Pinterest! haha While it will take a year or so before we can see if
there's much improvement on this route for him, Brent and I are
feeling so much better and the pregnancy weight is falling off of
me! Love that! (Sidenote: I have little doubt about Dr. G's theory of
the elimination diet and the long-term process to get an accurate
allergy diagnosis since I witnessed that first-hand with my young niece
and her allergy history.) Today I should start hearing back on some of
N's
bloodwork from yesterday, and then we will wait for the other labs that
had to be sent off. Once the referral goes through for the scan, we
will make the appt. for Brent to take N up to Anchorage. We are
working on getting all of N's med and therapy records to submit to
Dr. G's office to get on the waiting list (as of last week there were
only 4 on there. Again, Praise God!) and then Brent will take N to LA
when that time comes.
Please keep us in prayer for wisdom and
discernment and finances. We are trying to proceed cautiously, but
again, it all seems to be falling into place so fast! I am planning
to start a low-key blog to post short updates for friends and family
and will send the link out. (Similar to a caringbridge type blog.)
That way you can see how he is doing if you wish. While we're not
recommending that everyone in our situation necessarily follows suit
with us, we are willing to be guinea-pigs for you and you can see if
any of our experience will help yourself/your family member in any
way. Blessings to you all, and thank you for all of your support and
encouragement these past 9 years. We are so grateful for you, and how
you bless our family.
Much love,
Hillary
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