People
often ask me, “How did you do it?” and I smile and tell them how lucky we are.
But the truth is, it has nothing to do with luck and everything to do with
working harder than we have ever worked in our lives. How do you recover a
child from PANDAS, Autism, mitochondrial dysfunction, behavioral disorders,
oppositional defiant disorder, learning disorders, ADHD/ADD, OCD, anxiety
disorder, insomnia, seizures, bipolar, celiac disease,
and a host of autoimmune & neuropsychiatric labels?
Answer:
You give
them every single ounce of who you were, who you are, and who you’ve always
wanted to be and you NEVER give up on them! You know in your heart and mind that they can successfully recover.
Please,
don’t let ANYONE convince you otherwise.
At one
point, my 7-year-old son had almost every single one of these diagnoses in one
form or another, yet after seeing over 25 specialists, we were finally told
that there was nothing more that could be done. As a “traditional”
medical practitioner, I was shell shocked but not yet convinced. It was
absolutely baffling that a seemingly normal, bright, and highly social little
boy could suddenly become autistic at 4 years old! He clearly did not meet any
of the criteria for childhood disintegrative disorder, the only known later
cause of autism. Though he was always high energy and prone to tantrums, he
never resembled the child we were now forced to raise. Despite offers
for sedatives, anti-depressants, and anti-psychotic drugs, no one had
any idea what could have happened. Yet just before this personality
abduction, he had a life threatening illness known as Kawasaki’s Syndrome in
which he was quickly diagnosed and by all accounts, successfully treated. How
then, could he go on to develop most of these disorders in the space of a year?
Though we would later learn that Kawasaki's is often related to a sneakier
version of the strep bacteria, it would be two more years before PANDAS became
a household word, claiming my daughter in its wake. During that
journey, we encountered every specialist imaginable and yet each encouraged us
to readily accept these devastating changes. Why would so many physicians
casually suggest that we “change our expectations” and blithely accept this
lost little boy who would clearly never lead a “normal”, healthy, or happy
life?
In fact,
it was this peculiar lack of interest and indifference among his physicians
that made me realize something very crucial; once we attach a diagnosis and put
you in our “little box,” it takes an extraordinary amount of evidence to
convince anyone to look beyond that. Since most neurological or psychiatric
disorders cannot be “cured,” you’ll be fortunate to receive medications to
reduce the severity of the symptoms with very little chance of receiving an
appropriate work up, let alone regaining your health. Although my son’s
diagnosis was ultimately PANDAS, it took an extraordinary level of advocating
over a 2-year-period, to reach this conclusion. Why? Many medical providers
believe this is related to the changes in healthcare over the past two decades.
One major issue is cost. An extensive work-up uses a lot of valuable
resources. You should know that if you or your child is diagnosed with an
autism spectrum disorder, anxiety, depression, irritable bowel syndrome,
fibromyalgia, or chronic fatigue syndrome, there is a dizzying array of
potential causes, all of which are just simply not cost-effective to
investigate. Oddly enough, there has been an explosion of these syndromes in
the past two decades and evaluating every patient would cost millions of
dollars, often with little yield. Therefore, it just isn’t worth it………unless of
course, it’s you or your child who is suffering.
If you
choose to pursue it, your medical visits will be managed by an incredibly
overburdened healthcare provider who is, at best, aware of much of the evolving
science from a decade ago but of course, has taken newer seminars regarding
issues encountered in daily practice. A common misconception among patients is
that physicians and nurses are open-minded professionals who think like
scientists, with a keen eye for learning new things. In my experience, nothing
could be further from the truth. For many, if they haven’t encountered
something, it just doesn’t exist. In fact, we often search for articles that
support our preconceived notions rather than seeking out opposing information.
This is the overriding reason that so many physicians and nurses outwardly
dismiss the gluten and casein free diet as well as the biomedical treatments
for autism and CFS/FM. Sadly, it isn’t that any of us have researched and
read the data, thus comparing what we thought we knew to the emerging evidence.
We just do not believe it so we counsel against even trying it. Though many are
stunned by such revelations, it really is as simple as that. Frankly, it wasn’t
until I decided to research many of the biomedical interventions and theories
myself that I realized many of them were based on reasonable studies that were
conducted by reputable institutions! I hadn’t done so before because I didn’t
need to, I didn’t have a sick child.
And, for
the first time, it occurred to me that we had “thrown the baby out with the
bathwater” in entirely shunning alternative medicine. After much thought, I
realized that this was mostly related to the wide eyed fanatics who raved about
astonishing “cures” from some ancient herb in the Himalayas or a wild berry
found in the deepest recesses of Peru. Yet, we hadn’t lost all faith in the
so-called “traditional” medical path when drugs like Rezulin caused liver
failure and death or the RSV vaccine caused death, bowel obstructions and
Kawasaki's Syndrome in babies and children. It seemed ironic that the same
practitioners who scoffed at natural therapies were causing drug resistant
bacterial infections in handing out antibiotics to every patient with the
sniffles. So, despite the fact that “alternative” treatments were rarely fatal,
we somehow felt justified in belittling even the concept of changing a sick
child’s diet. In fact, a recent PBS documentary on autism highlighted this
ongoing absurdity when they contrasted a severely autistic boy’s recovery with
diet and biomedical treatment while several physicians continued to adamantly
discourage parents from even trying the diet. This is utterly preposterous
given the fact that changing the diet means taking away processed junk foods
and starches while focusing on fruits, vegetables, and lean proteins.
You might
wonder why a healer would dissuade a parent from trying something so benign to
help their “incurably” delayed child. Well, it isn’t “proven!.” You would
be correct to point out that many of our medical treatments aren’t proven
either but we still use them “off label.” Somehow, our unproven
treatments are just "different" and somehow better than yours. Yet,
most would agree that a child could survive quite well without junk food, so
what is the real issue here? It’s mostly cultural. We are really just
conditioned to believe that milk is the only way we can support growth and
healthy bones in our kids. Consider the child who has known milk
allergies, is he or she being willfully deprived? Are these parents naïve
renegades? Honestly, we just don’t think about it that much. We merely shake
our heads at the absurdity of dietary changes and move on to the next patient.
No matter that we are actually counseling this next patient, a diabetic, on the
importance of dietary changes! When one chooses to intensively study this
area, it becomes patently obvious why this is a helpful part of the treatment
regimen rather than a magic cure. Still, it is much simpler
to embrace the known rather than occasionally stepping aside to admit that
we don’t have all the answers. Instead, we insist that such theories are ridiculous
and unscientific as though we’ve meticulously investigated them.
Much like
Dr. Russell Blaylock MD, a neurosurgeon and chief authority on excitotoxins, I
believe that the benefits of the gluten and casein free diet have more to do
with the glutamate (MSG) content of processed foods than some of the other
factors. Since the foods with the most MSG are corn, soy, dairy, wheat,
and roasted nuts, it is no wonder that so many react to them. With this in
mind, eliminating gluten, casein, & soy are often highly beneficial dietary
changes as long as these foods aren’t being replaced by equally processed
GF/CF/SF foods, as we learned this the hard way. How do my children feel about
this lifestyle? After breaking the piñata at his pre-school, the teacher
(who had forgotten our dietary changes) told my then, 5-year-old son that he
could have anything he wanted. Yet, he told her that he wasn’t eating gluten
and casein anymore; something he could never have expressed while eating these
foods. When I asked him about this later, he explained, "Mama, my brain
feels a lot better on our new food.” And, while this hasn’t been the
magic cure for everything we've faced, it also doesn’t begin to account for all
the benefits we’ve had. It was merely a wonderful start. (Please see Excitotoxins,
under Diet & Supplements)
In
closing, I’d like to offer some words of advice for those searching for
answers, regardless of your medical problem. “Don’t lower your expectations for
yourself or your child unless you have tried everything you reasonably and
safely can. Each time I look at my beautiful, healthy, and neurotypical
children, I am reminded of what would have been. If we had followed all of the
specialists advice, we would be in a very different place today. I can’t help
but reflect upon all of the lost children I’ve seen over the past decade. If
not for the misguided advice from well meaning medical providers, they too may
have had the opportunity to live successful and healthier lives. I encourage
you to “Question authority!” Please do not blindly trust your future or that of
your child’s to anyone else. Physicians and nurses are human and as such, we
are going to make mistakes. We do not intend to harm anyone and it truly isn’t
a big cover-up to intentionally deceive anyone. The fact remains that we really
don’t know that autism, chronic fatigue syndrome, fibromyalgia, behavioral
disorders, PANDAS, ADHD and many other disorders can be successfully treated.
Finally, “Don’t ever give up!” It will be the most exhausting, demanding, and oftentimes,
overwhelming solution that you have ever confronted but you can do it!
While though there are no assurances in life, I can honestly tell you
that no matter what you are facing, you can change your quality of life to
enjoy a sense of well being and better health. And most importantly, you should
never, ever give up because your future is worth fighting for!
April Ward-Hauge MS, NP BCIM
