Eradicating the BCW: The Autism Marathon, Day 23 – Noah Goes

Rev Preacher“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 Mary Coylewhen 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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16 Responses to Eradicating the BCW: The Autism Marathon, Day 23 – Noah Goes

  1. Luna says:

    Your boy sounds a lot like mine. He screams. A LOT. If I made him go to school, he’d try to throw himself under the bus too (But I don’t. I home-school.) He’s a non-responder to DAN protocols. If something does work, it works for a little while. He’s a picky eater. Etc.

    Cerebral folate deficiency, you say? Gotta look into that one!

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  3. Laura Hayes says:

    I love your articles, Lisa. You certainly have a way with words! Our medically-injured son (ultrasounds, mercury from my amalgams, vaccines up the wazoo, anesthesia twice as a 1-year old, antibiotics, blasted Tylenol, etc.), not to mention bad “food” I fed to him and me, is now 19. This “autism” journey is most definitely a marathon, and not for the faint of heart. When I think back on the battles we have faced/endured, they are far too many to count. Glad to know you are soldiering on, as that is what we must do. The alternative is too bleak to even consider. Hang in there, Lisa, and keep on keeping on! You, Noah, and your entire family are in my prayers :)

  4. Jean Ghantous says:

    Every article I read here resonates with me, too. My son was not a “typical” responder to many of the interventions that help other kids so much, like B12 and the like. I had wanted to do the genetic testing for the methylation issues early on to get a direct look at what was happening, but I was told that observations with the supplements and food logging would give me the clues I needed without spending the money. We did eventually use the Yasko panel to look at the genetics behind some of the pathway blocks, and I so wish we had done it earlier. Yes, over time I learned he didn’t tolerate methyl donors well (hence the B12 fail) and that the sulphur drugs that so help other kids are detrimental to him. But the actual testing told me all of that and the WHYS of what was happening immediately. No need to go through trial weeks of hell of new supplements that he never settled into the way other kids do. I wish I had done that testing earlier, to get a handle on the medical facts that were present immediately. Certainly, there is much more to do to heal the gut than just supporting these enzymatic pathways correctly, but wow, what a life saver it would have been to do it earlier.

    So my son would NOT do well at all on a GAPS type of diet, he cannot tolerate the sulphur foods and the high oxalate content of those foods. What may work for one child can cause problems in another. But so many people are steadfast that THIS is the way to go and anyone who does otherwise is doing it wrong.

    As a side note, for us, just going GFCF was not enough. After we went GFCF and saw good results, things were going well but then we would see tantrums and anxiety and such even when the diet was perfectly “clean” in terms of GFCF. After researching, we removed corn and soy and the sensory issues and tantruming stopped. We had inadvertently started getting more corn and soy heavy after going GFCF and those two foods can also produce the same opiate like response that gluten and casein are known to do.

    Also, for those going crazy removing all sugars and such for yeast issues and spending months and months doing some of these diets….look into the articles on biofilm and bugs. If starved, yeast will burrow DEEPER into the intestines looking for food and become even more of a problem. Eliminating sugars is not necessarily the answer. Each child is different, so jumping on a bandwagon because its a bandwagon may actually be the exact thing you do NOT want to do for your particular child. Be clinical, be observant, be open to learning.

    Jean

  5. Happy says:

    Wonderful piece. Keep fighting!
    I’m cheering for you.

  6. Elizabeth Struyk says:

    I agree with the Rev. We try so hard to help our children and we keep on like soldiers in battle.

  7. mike kohloff says:

    Try Essiac Tea & Coconut oil.
    I’m sure it moderated my gut flora &
    definitely calmed me.

  8. Carrie says:

    Lisa-
    You can’t beat yourself up too much about the BCW. My son still has terrible GI issues, and he has been on the GAPS intro diet for 3 years. He has not eaten so much as a simple starch or grain or anything sweet other than a few berries and some stevia sweetened lemonade for 3+ years. I have made every meal and lunch from scratch using whole organic single ingredient foods compliant with AI paleo and avoiding FODMAPS. He is still overwhelmed with yeast. He has also not responded well to DAN treatment, as the recommended supplements trigger profuse nosebleeds.

    We head back to the DAN! tomorrow with pages of notes and requests for tests and a hope that perhaps HBOT coupled with the diet and antifungals will finally help his beat the BCW. If not, I will give myself a break, re-set my mind, and then start to tackle the issue again from another angle. You will do the same. There is so much going on, you have to forgive yourself for not seeing everything.

    Good Luck to you and Noah. I hope he turns a corner soon. Much love.

  9. KFuller says:

    You are gaining attention that I have never seen before! People are listening. Praying for your family.
    And I will have a visual of the beasts “polishing each others wood” in my head for days. and I will laugh maniacally!

  10. Stephanie says:

    Thank you for saying it! Autism is an injury, not a freaking fad. That’s how I feel that its’ suddenly “cool” to be autistic. It’s not cool, its awful with lots of pain, confusion and difficulty. Autistic kids are great for dealing it it yeah but its not like they volunteered.

  11. Rebecca Magliozzi says:

    I am so terribly sorry your boy is going through this! Prayers for you and him. Are you sure this is not lyme disease, though, alongside the yeast? My autistic/PANS son has lyme and I am seeing alot of potential signs of lyme here in your article when you describe your son. Not responding to any treatments for very long and regression, severe tummy issues. Crazy aggression, screaming incessantly, pale skin and doesn’t tan, horrible circles under eyes, skin issues. Lyme comes with crazy or bipolar and even psychotic behavior, bad defiance, bad tummy issues and inflammation, lots and lots of food allergies, ongoing strange symptoms, muscle pains, weakness. My son would do well on new treatments/protocols and medications, then regress again, or sometimes just get worse. Then we found the lyme disease, and at the end of two 14 day rounds and after starting Virastop and having him on NAC and low dose naltrexone, I noticed better health, no joint pain, less autism, weight gain, less tummy distress.

  12. BCW is alive and well here also! I so feel ya.

    <3

  13. Natalie McClay says:

    Great as ever.
    I’m sooooo with you on this :)

  14. Courtney says:

    Love you Rev….you tell it like it is and have a potty mouth just like me. But with what we have gone through and my experience doesn’t even come close to yours so I can’t imagine….if people judge me or any of us for our mouth then they can come babysit for a week and then see how great nerves and vocabulary are. I am just happy for a state close to sanity at this point. Last night I watched the Autism One Congressional Hearing Panel video and sobbed the whole time but…I did not throw the lap top at a wall afterward so…score one for me. Prayers for strength, endurance and peace for Noah during this difficult time. I know I am going to meet the BCW soon as we SLOWLY (my child has a cup of what could be considered ODD but is really mostly personality wise “our child”…runs in the family attitude with a dash of what we get to call “autism”) approach GF/CF, never to this extent probably but she’s lurking inside my son’s chosen organic/clean carb & dairy preferences even if she’s not glaringly obvious. The hubby may be the marathon runner but in autism you’re right-the whole family is gonna have to finish this race. Love your way!

  15. Shawna says:

    My prayers are with you and all the families seeking to recover an injured child. We are off to see Dr. Bock after I realized he was relatively close to us. I didn’t even know he was that close and kick myself for not reading his book sooner or seeking him out… Mostly scared to death that we have permanent damage…. I have so many regrets I don’t even know the person I was back then taking my child to the pediatrician for shots or colds. My youngest 2 year old is vaccine free and antibiotic free and is reaching milestones faster than my other three and its hard to watch her surpass her four year old vaccine injured sister by leaps and bounds. Many prayers that Dr. Bock how can bringing healing to my daughter.

  16. Laura says:

    Hang in there!!

    I wish we could clone Dr. Frye. Then every autistic child could get top notch medical care. My child has benefitted so much form his insight!

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