Do you feel like you just
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A Medical Insider's Story

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