“Give me three words that describe Noah since seeing Dr. Krigsman,” I asked my husband over breakfast on Mother’s Day, almost a month after our visit to see the notable researcher and gastroenterologist.
“Agitated, cleansed, chatty,” he obliged. “You?” he inquired. ”Angry, frustrated, just-under-the-surface,” I replied. We both nodded and I headed upstairs to get ready for brunch with the other amazing mamas in my family. Normally, I am able to switch gears easily and get into the spirit of things. Like most Thinking Moms, I love a good party. For some reason though, I just couldn’t adjust my mood to fit the festivities.
Mother’s Day marked the 23rd day of implementing Noah’s new diet and his 17th day on steroids for treatment of his gastrointestinal distress and inflammation. So much has happened in such a short period of time! What follows is a compilation of my observations. Many of you know much of this already (from personal experience) but, I process as I write so I am sharing it with you in hopes of helping myself and others glean a better understanding of what some of our kids endure. Forgive the steady stream of consciousness and foul language.
Using the GF/CF diet exclusively to control Noah’s autism symptoms was like trying to thwart a nuclear bomb with a slingshot. Since the age of two, Noah has been organic, GF/CF with minor indiscretions here and there. At one point, we pursued SCD (Specific Carbohydrate Diet) without medical intervention and that diet alone gave us great improvements in his bowels. But it proved too difficult to follow given the rigors of a household with two neurotypical sibs. Funny thing though, as challenging as the SCD was, autism proved an even greater challenge. When I used to say, “Sorry, we can’t come because I have to peel, cut and cook vegetables all day.” I then had to say, “Sorry, we can’t come because Noah will scream until your ears bleed and punch you in the face for asking him how he is today.”
Since implementing a truly clean diet, no junk GFCF or processed foods– very close to SCD but not as pure, we are witnessing the emergence of the Bitch Crack Whore, a moniker coined by Autism Is Medical co-founder, mom to a recovered child, nurse and general rockstar, Jill Rubolino. “That BCW has a good gig and she does NOT want to leave,” she told me, as she prepared me for the worst. Which she knew, from experience, was to come.
I can tell you, the BCW’s presence in our household tells me that Noah has never, despite FOUR YEARS of intensive dietary, biomedical and homeopathic intervention, successfully eradicated yeast. While his medical team agreed he would do quite well on the elemental diet (which consists of an entirely amino acid based liquid) to help expedite his intestinal healing, the BCW has fought us at every turn. We have bought every single imaginable version of the elemental formula. Some taste like fruit juice. Some taste like milkshakes. They both end up on the floor, intentionally thrown up onto Noah’s clothes or dripping from my bangs. Until Mother’s Day, I was at least able to get him to take a variety of SCD style pancakes to compliment Dr. K’s medical plan. These are basically egg, squash and chicken-based purees that I cook on a cast iron skillet until they loosely resemble a pancake. For some reason though, the BCW decided to boycott them this Sunday. Every meal was tossed on the floor or thrown back in the face of the person serving it, accompanied by a blood-curdling scream. The screaming has pretty much been a constant since May 1st. I would say about 75% of Noah’s day is spent screaming.
That BCW has some vicious pipes. She has spent years colonizing those gut bugs, holding on to that undigested food and wreaking havoc on my son’s brain and bowels. She does not want to move. His body is her home and she is not giving it back without a fight. See, to her, a mental institution is every bit as comfortable as a hammock in Maui. As long as she is in control, that’s all that matters. I want to see my boy in that hammock, so I am back to peeling, cutting and cooking…
By day five of steroids, Noah was having the first formed poops he has had since he was three (and on SCD). Strangely, it was later this same day that the BCW emerged. I think this is probably the most important thing every single autism parent interested in recovering their kid needs to know. When you say, “I tried GF/CF and it just didn’t work, my kid was a mess…” that is just the beginning of the story. That’s like a 200 lb woman saying, “I did one set of tummy crunches and I don’t look like a Victoria’s Secret model.” Technically, GF/CF did not work for us either. Noah was still sick, still had horrific skin, rheumy cheeks, did not tan, and had dark circles under his eyes. A GF/CF diet in America, where Monsanto and the FDA are constantly polishing each other’s wood, is not always enough. Clean food and medicine are becoming harder and harder to obtain thanks to their unholy alliance. Ian’s chicken nuggets, Panda Puffs and an Enjoy Life crunch bar does not a healthy lunch make. I say this not to lecture you…but as a cautionary tale and reminder to me. The BCW is one horrific and feisty beast and when she is evicted I never…EVER want to see her again.
If you have a child who is a raving nutbag on GF/CF—that’s great news! You know this simple first step is taking you in the RIGHT direction. Literally think of a heroin addict coming off their addiction. If your kid is acting like this, you are doing the right thing. If milk and bread are “harmless” as their makers repeatedly report, then why do they behave like zombies or psychopaths when we remove them from their diet? Their behavior is an indication that this is a phase they need to go through to heal! If you are a newbie doing this diet…Do NOT give up. The GF/CF transition was relatively simple for us, so I spent close to a year and a half congratulating myself for making that simple change. “Wow, so you guys don’t eat any gluten—OR DAIRY?” My friends with NT kids would praise me. “We do not! And we are better for it!” I would say, practically beaming with pride about my general awesomeness for being such a rockstar mom!
What a dillhole.
We autism parents, because our battle is so mighty, our neurotypical kids miss out on so much, and we have given all our money to the BCW…we…well, we have a bit of a bent toward self-pity. Not ALL of us. Many of us. Of course, if we did NOT indulge in a little self-pity we would not be human. Just don’t stay there long. Another brilliant thing Jilly says, “This is a marathon, not a sprint.” Right now…what we are doing with the elimination diet and the roids? A sprint in the marathon. It is finite. It has an end. Ritalin and Risperdal are meant for life.
Now, that said…I am NOT demonizing any medical support that helps parents get their child to a point of healing. Medicine is generally intended to ease symptoms until genuine health and healing are achieved through homeostasis (whole body healing and healthful living). I am demonizing the use of drugs to manage a child, or adult for that matter, throughout their entire life; in particular psychiatric medicines that do nothing to address medical illness but instead mask symptoms. There is no medical standard of care for autism because if we begin to treat these children medically, we then shelve psychiatric meds that are guaranteed sellers. Yes, they do nothing to actually help the child, but, they are top sellers! Psychiatric meds are a temporary answer to buy time and distract the BCW until you find the REAL ANSWER.
You have GOT to start looking for that answer ASAP. The day your child is diagnosed…that day…you get to go home, have a pity party. Drink a bottle of shiraz, eat a pint of ice cream…whatever. But that lasts 24…48 hours MAX. Then you need to get up and get your ass moving. There are so many resources and so many paths to healing. But you must steadfastly commit to recovery, otherwise you are just a candle in the wind, and that BCW is a blowhard with a fierce set of lungs.
These are the things I sincerely wish I had done differently. Please know this is not regret. It is hindsight. I am not beating myself up. I am reflecting and learning as I go.
o I wish I’d known homotoxicologist, Mary Coyle of the Real Child Center in New York when Noah was diagnosed. I met her too late in the game. It is my sincere belief that had Noah seen Mary when he was 2, he would be so much better by now. When I began her protocol, she said, “In two weeks, Noah will be very affectionate, he will come to you, want to snuggle.” This was a dream come true because at the time we had a five year old who did not know we existed. At first, we didn’t believe her. That prediction came true (to the day) and was the first real intervention we’d ever done that provoked noticeable change in our son. Within weeks he was saying, “I love you.”
o We did not know Noah is a biomedical non-responder, meaning he did not experience significant improvements with conventional DAN doctor protocol. We pursued this line of treatment for three years before we knew this. Many, many children DO respond quickly and spectacularly to these protocols to varying degrees. Noah was not one of them.
o I have, in the past, let my enthusiasm for a treatment cloud my assessment of its actual benefit. And honestly? The easier the protocol the more I loved it. Until, of course, I realized it wasn’t working. I can hear the BCW laughing now while she chews on my money and Noah’s intestines. DO not fall into this trap. Take copious notes and assess progress with an objective eye. Talk to your medical team frequently to see if your child’s response to a particular treatment is typical or not. Be patient once you choose a path but do NOT waste time if you are not seeing results.
o I wish I’d seen pediatric neurologist, Dr. Richard Frye in Arkansas and gastroenterologist, Dr. Krigsman in Austin, earlier to address the very real medical issues at play with Noah. Would have been nice to know about that Cerebral Folate Deficiency he has before I spent a year and $1,200 on camel’s milk. The value of knowing the true clinical diagnoses your child carries is beneficial for treatment, but also gives you credibility when you need emergency care for that child in a mainstream medical facility.
o I wish I had NEVER EVER vaccinated Noah. Knowing what I know now about the immune system and epigenetics coupled with our family’s medical history, Noah was simply NOT a candidate for vaccination. I wish doctors knew this and that they bothered to read the package inserts when 1 in 2 kids is chronically ill and 1 in 29 boys has autism.
So many of these bullet points have to do with time. “Sooner, earlier…never.” That’s the thing. As autism parents, we are always learning and that takes time. And sometimes, given the complexity of our protocols and the extent of our child’s illness and behavioral issues…sometimes, we just need a break. We are NEVER going to get a break from the situation, so from time to time you HAVE to take a break from the protocol just to stay sane. I’ve done this on and off throughout the process, but now as I look at how my son is suffering, I do regret not having done more, earlier. I am full of hope for families who get their kids diagnosed at two. They will get those kids back. I know it. I still have great hope for my sweet Noah, but, there is this sense of racing against time that wasn’t there before. He literally threw himself under a bus yesterday trying to avoid going to school. He is incredibly reactionary and as I mentioned screams incessantly. This is the BCW, not Noah…but yet…he is the one suffering. I know, life is not fair. But there seems to be a big difference between someone who steps off a curb, gets hit by a car and is maimed for life and a child whose mom dutifully took her healthy child in for his vaccinations to avoid the misfortune of illness in the first place. It’s unfair and unjust. It’s criminal.
Clearly, I use humor to get me through, but there is really nothing funny about a child who is in so much pain that the way he communicates with the world is through hitting and screaming. I think it is a very serious sign that our society is in decline when we choose to celebrate autism as a “different-ability” instead of doing everything in our power to correct it. Hey, it’s Celebrate Gaping Head Wound Month! It’s Severe Metabolic Distress to the Point of Psychosis Day! Its’ time for our annual Hyperimmunoglobulinemia Fest! Assinine. These children are sick and they need our help.
The Goeses and all TM’s are committed to running the marathon. We are hopeful our present situation is temporary. The BCW has been given her eviction notice. More updates to come…
Love, The Rev
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