By Judy Converse MPH, RD, LD
Are you on Twitter? I’m hooked. Lately I’ve been tweeting items from my practice. Sort of like Tales From The Crypt, only it’s autism, the tales are all 140 characters (the tweet limit), and, they are all true. Stuff like these actual tweets:
From my case files: Child skipped lunch at school, ate Skittles, then trashed classroom yelling "take no prisoners"
More case files: 14 yo boy w/ FTT & #autism, breaks helmets w/head banging rage: Rx bowel infxns --> gains, grows, stops violent outbursts
More case files: Some parents I work with whose kids recover from #ASD don't want the past revealed to schools, neighbors. Et tu? #FAY
If you’re not into Twitter, #FAY is a searchable tag for “feel autism yet?”
I feel autism. I have felt it since 1996. I didn’t know it was autism. Technically, it wasn’t, because my baby was just a few weeks old. It was big scary problems with infant feeding, growth, digestion, and absorption. I knew those problems had the power to impair a baby’s brain, and injure one developmentally, for life. That’s because at the time, I had two degrees in nutrition, and was a registered dietitian. I’d done rotations in WIC clinics, seen lots of babies. When my newborn son had seizures, vomit, that crazy copious mucousy gold poop, growth regression, infection after infection in his first weeks, hours of non-stop, blue-faced, breathless screaming, tremors, syncope, and insomnia (i.e., awake for 22 hours at a time), my pediatricians told me this was: Normal. The problem wasn’t the baby. The problem was the mom!
Those may be the five most motivating words I ever heard. I set my jaw then and there. Either my university degrees were a big fat rip off, or I could actually go do something about this. That is what I decided by the time my son was four weeks old. So I did: A practice, books, testimonies before federal and state legislators, articles, blah blah blah.
Maybe I should just tweet stupid stuff my clients and I have heard over the years from our doctors. These are not-made-up, real comments, from real doctors:
“That gold colored mucous in your son’s stool is probably coming from the diaper.” (This one came from my own pediatrician in Massachusetts, in 1997.)
“Stop loving your child. Stop hugging him. He has no ability to return love. He has autism.” – (This one came from a neurologist at Boston Children’s Hospital, to a client of mine, in 2003.)
“There is no link between nutrition and development.”
Ouch. Now there’s a slap in the face. Six years university training and two degrees, reduced to mucousy yellow doo doo in one fell swoop. This pediatrician said this to a client of mine somewhere in Colorado, circa 2009.
Tweets are short, so let’s go back and examine what my “unrelated-to-development” training in nutrition did for those kids. Let’s do the 14 year old boy first, whom I met in fall of 2008. As usual, I was the last stop, and the mom had unearthed me somehow. He has classic autism. Her son had seen DAN! docs; he was using a near-perfect special diet plan, and had a hefty rotation of MD specialists, including GI. But he was dying anyway. He was 70 pounds, had gained no weight in years; was bedridden from weakness, and had lost self-care skills, like eating and using the bathroom. He couldn’t walk unassisted. He was facing surgery to insert a feeding tube into his stomach. Yes, he broke helmets with rage, which reliably occurred relative to bowel movements and bowel pain. He was relentlessly constipated and had needed in-patient clean outs to remove stool in the past.
After eight months of pharm-free nutrition focused care, he weighed 105 pounds, had grown several inches, and had restored normal growth status. He was back at school, was full of happy energy, was doing flips on his trampoline daily, and could talk and interact more. He was doing outings and normal things again, and even managed a trip to Disney World. He had daily bowel movements, much less pain, and was having fewer rages. He got his life back. I even weaned him off a psychiatric medication he’d been given to bracket the rage. I got the care covered on insurance. I don’t know what the doctors who had been treating him unsuccessfully for years thought about all this. None ever called me to ask what I did to turn this kid around. I just wish I had their salary and benefits. Can you imagine pulling, say 350K per year to not help these kids? Or as one mom I work with put it, be "the regular GI guy who never does anything"?
The “take no prisoners” kid is seven years old. He has strong OCD tendencies, stilted communication, behavior problems, and fierce rigidity around routines and play themes. He also lived on Prevacid throughout infancy and toddlerhood: Case files: #ASD boy on Prevacid x 3yrs. Bones never mineralized normally; growth impaired; constipation. Bad drug!!
What this means is that his digestive capacity never evolved normally. No normal bowel flora, lots of Candida and Klebsiella (the usual suspects) after repeat antibiotics and the constant drip of Prevacid. Though he was born at a normal weight, he had failure to thrive by the time he was a year old. Now, he has a rickets-like presentation: Bowed legs, beaded ribs. He is stunted, and underweight. The family has been told this is “just how he grows”. Even though testing ruled out abnormalities for growth hormone, they are also told he should have injections of this anyway. His endoscopy showed lymphoid nodularity at the terminal ileum (sound familiar?) but this was regarded as being of no consequence.
Obviously, this is a child who has been unable to absorb calcium typically to mineralize bones – most likely, thanks to the Prevacid, which probably shifted the pH of his entire GI tract. He also had vitamin D deficiency, and anemia. He has a weak appetite (like many kids I work with) and can’t eat the quantity of food he needs to grow – again, probably because his stomach is no longer able to produce acid it needs to promptly initiate digestion, and he doesn’t make enough enzyme to finish the job anyway. When I met him, he had not grown or gained weight in months. Besides slipping into marginal or even frank deficiency status for some vitamins and minerals, he had protein calorie malnutrition too, and nobody had noticed. He ate a lot of protein and calcium daily (yep, from milk) but it wasn’t being absorbed. This was obvious in his clinical signs and growth pattern.
After four months of nutrition care, he has managed to gain three pounds and grow nearly an inch. This is slow going, but it’s going, which is better than anything the whirlwind of hospital-based specialists have done for him with years of effort and tens of thousands of dollars of insurance money. The Skittles incident is just another sign that he isn’t absorbing much of anything typically, nor is he able to process chemicals and toxins. I’ve got lots on his pharm-free fix-it list, including acidifying his stomach gently at each meal, so he can begin to absorb nutrients more normally, and adding enzymes that can work in his overly-buffered GI environment.
Then there’s the almost-poisoned boy. He tanked after first MMR with an abrupt, dramatic crash, but that was years ago. Now he’s just another profoundly autistic child with intractable bowel issues who has also seen a merry go round of specialists: From my case files: Impacted boy w/#ASD given Miralax & Go Lytely by his MD, caused polyethylene glycol poisoning b/c of leaky gut.
Close call “Colin” is six now. He was given those laxatives in hospital, to clear a fecal impaction. He has profound autism; this is his third total impaction. He has intestinal permeability, like most kids with autism. Oops – oh right. The GI community doesn’t widely acknowledge that stuff. So, polyethylene glycol, which is what those laxatives are made of, seeped into his body, quietly, slowly, placing him at the brink of a coma, while his doctor stood around monitoring things.
And there's this girl: From my case files: 2.5 yo girl w/#autism given steroids for gut inflammation w/florid bowel infxns still there. Caused major regression
What little immune response she could mount against those infections was suppressed further by the steroids, and she tanked – mostly because her GI doctor was in another state, and she didn’t have appropriate monitoring. The take home message here is that there should be a responsive GI doctor in her vicinity, not 2000 miles away. After months of pain, crying, posturing, dramatically worsening autism features, and feeble eating, I got her back on treatment for bowel infections. This helped her in short order: No more crying and posturing; the autism features began retreating; and she began to eat more normally.
I’ve turned these kids around with evidence-based nutrition tools. This is just me applying what I learned in school. Yes, nutrition relates to development, learning, behavior, cognition– all that stuff and more, and it’s pharm-free (read: not patentable or profitable, eg, not noticed by the medical community).
In fact, that’s my next book title: Special Needs Kids Go Pharm-Free: Nutrition-Focused Tools To Keep Kids Happy, Healthy, Focused, And Strong. Nutrition care doesn’t cost thousands; you don’t need pints of blood and buckets of urine sampling to begin; it can be covered on insurance, or even on the federally mandated Early Intervention Program.
Okay great, I’ve proven my point. Nutrition matters, food matters. Pediatrics today has not only forgotten this, it doesn’t even expect basic, common-sense knowledge in nutrition from pediatricians. I’d wager that this has caused colossal, incalculable trauma, morbidity, and mortality for hundreds of thousands of children right here in the US. But perhaps saddest of all is that tweet about recovered kids. There are many stories I will never tell. Like gag orders on court cases where vaccines were ruled to cause SIDS, there are lessons here that won’t be shared.
Can you blame parents of recovered kids for wanting to bury the past? Schools think you’re crazy; neighbors eye you warily; the media wants to put your child under a microscope; you need an attorney and a $10,000 retainer to change your child’s IEP disability designation. I grapple with this too. I don’t like to talk about my son’s past either. He’s 13, brilliant, healthy, able, and well. Like his peers, he is sorting out whether 7th graders go on dates, grousing about homework, and wishing he had an i-Phone to flash at school (not happening, unless I get that GI guy’s salary). He has his life back too. If he wants to tell you about it all when he is 21 or 25, that’s up to him. For now, he’s a busy kid with a heart and soul like anyone else.
One last tweet: 10 yrs in practice, helped some 400 kids w/#autism: Never met a one whose soul was not alight, whose eyes did not yearn for connection #FAY
Judy Converse MPH, RD, LD has been a licensed, registered dietitian since 1989. She has a master's degree in public health nutrition and a bachelor of science degree in food science and human nutrition. She created Nutrition Care for Children
in 1999 to serve kids ages 0-18 with developmental, learning, growth, feeding, allergy, and mood/behavior concerns. She has authored books, articles, and an accredited professional learning module on using nutrition strategies to support children with autism, and has testified before state and federal legislators on vaccine safety. A New England native, she lives in Colorado with her husband and son. She Tweets at http://twitter.com/NutrCareAutism
. Her FaceBook page is at http://www.facebook.com/pages/Boulder-CO/Nutrition-Care-for-Children/132315651650