Orange and purple. Pumpkins, Frankenstein, cute goblins. It’s Halloween. When I was a kid, October was my favorite month. Not only did it bring my birthday (still does), it felt like the most fun time of the year to me. Hurtling around outdoors with neighborhood friends on blustery, chilly fall days was my idea of heaven. We spent hours unsupervised and untracked, roaming woods and fields, and playing til our fingers were so cold it was just time to go in. New England’s blaze of colors was my backdrop. Leaf forts, leaf piles, leaf-filled scarecrows with my dad’s old clothes. Carving pumpkins, coloring decorations. Costumes, candy, staying out late to trick or treat.
It’s so different now, as kids spend less time outdoors with unstructured activities, and trick or treat traditions have faded out as we’ve become a more fearful society. Even less of this autumn joy might apply for kids with autism, sensory processing disorders, epilepsy and seizures – not to mention food allergies. It’s bad enough that this can be a traumatic week for kids on the autism spectrum and special needs. Routines and rules run amok (see Autism and Halloween: A Sometimes Scary Mix with Kim Stagliano). Behavior norms that parents work all year to teach their kids on the spectrum flip upside down. At Halloween, for some kids, confusion and anxiety mount as there are treats you can’t eat, and it’s loud, and random. But I’ve learned of news this week weirder than any Halloween trick, news that makes the autism journey at this time of year even stranger for me as a clinician. It’s called Purple Crying.
The CDC and American Academy of Pediatrics are putting some spin together to convince new families, obstetrics nurses, and NICU staff nationwide that it’s normal to have a screaming, trembling newborn. And that colic is a “a normal developmental phase, not a medical condition”. It actually says that on the Purple Crying website – yes, there is a Purple Crying Website.
Here we have a well funded effort afoot to systematically rework your thinking on this, right down to giving CDs about it to new parents, to take home with the new baby. The tag line on all this sends chills down my spine: “A new way to understand your baby’s crying”.
I did not understand my son’s crying as a neonate. Though the Purple Crying site does not intend to say purple babies are happy babies, my son’s crying turned him purple, and blue, and even left him unconscious for fleeting moments. It rocked his body into spasms. It kept him awake for as much as twenty straight hours, unhealthy and extremely costly for a newborn, who must eat and rest a lot, in order to survive. His limbs quivered, shook, and straightened. Yes, we called the doctor. Yes, we went to the emergency room. No, the physicians did not do anything. In fact, they were annoyed with us, because my son’s diagnostics were inconclusive. Once there were no clear test results, we went from being treated as proactive smart parents to being treated as nervous foolish parents. I should count my lucky stars: Nowadays, this scenario might land me in jail. I would be scrutinized for shaking him, in the absence of a clear cause for his symptoms. As it turned out, his symptoms were caused by an adverse event to newborn heptatitis B vaccine. But nobody told us that. We didn’t even know he’d been vaccinated in the nursery at birth. But that’s another story.
Prolonged, inconsolable screaming and crying is a serious sign of distress for an infant. It is a common feature of an adverse vaccine reaction. Is this what the purple crying public relations campaign is really about? CYA for the CDC? Like this: Your baby is suffering, maybe from a poorly tolerated vaccine we want you to use, so just ignore the crying, please.
Well, okay. Let’s acquiesce that babies can just plain cry their nuts off, boys and girls alike, for no particular reason, through the first three or five months of life, and it’s all right. Let’s make that leap of faith, and presume that we evolved to cry for no reason. We somehow got to the twenty first century, and never noticed this about human infants (but not other mammals?). Let’s presume screaming for hours on end is simply not related to a possible vaccine reaction (that may trigger lasting developmental effects, by the way), or any sort of painful inflammatory response to anything in shots or foods. Besides, the CDC reassures us that babies can look like they are in pain when they are screaming, but they’re not. Amazing creatures – they can do this for hours a day, and it’s fine. If you saw a newborn deer shrieking ceaselessly, would you think it was not in pain? Or that it was behaving “normally”?
I hate it when the CDC contradicts itself, and they’re doing it again. Here’s why this is not fine. First, obviously, it is not fine to tell parents to ignore possible signs of a vaccine adverse event. Second, for newborns, crying is exquisitely spendy. So is insomnia. It is not safe, normal, or healthy for young infants to spend hours awake and crying, week after week. Newborns are growing so fast, they need to eat two to three times more calories per pound than older kids and adults, just to stay alive. If you ate what a newborn needed, and you weighed 150 lbs, you would need to eat about 8500 calories/day just for baseline wellness. Add screaming all day and never sleeping to that, and, well, how long could you last? Just breathing inefficiently or suckling poorly can cost a newborn precious small gains in weight at the the start of life, if energy balance skews week after week into the red. This lowers nutrition status, and that in turn lowers disease resistance. Nutrition status directly correlates with immune function. Why is the CDC saying it’s okay for babies to endure something that threatens their ability to fight infection?
My next family arrives for consult in about thirty minutes. Was their nine year old child one of the “purple criers”? After taking nutrition histories on special needs children for eleven years, I have noticed that they usually are. They usually have more difficulty than their typical siblings did as infants, with screaming, crying, colic, and the orange part of this post: Explosive, copious, loose, orange-gold stools. These often fill the baby’s diaper, pants, and shirt. Stool to the neck and ankles, three or four, maybe even eight or nine times a day. My pediatrician back in 1997 did not say it was normal for my son to have bowel movements like that. But he did tell me it was probably coming from my son’s diaper (no joke – see this memoir I published on this back in 2002). Here in my office, too many years later, pediatricians are still giving parents some peculiar feedback on this: Now it’s “toddler diarrhea”, and it’s “normal”.
No folks, purple crying and orange poop are not normal or benign. My clinical observation is this: The more purple and orange there is in a child’s history from age 0-3, the more developmentally delayed, disabled, or challenged with inflammatory conditions the child is later on. These colors may haunt these kids for years, with lasting inflammation, developmental impacts, learning problems, or growth problems.
Colic is not a “developmental phase”. Colic is often milk or soy protein intolerance, and it is painful. This pain is avoidable, much of the time. Food protein intolerance is not the only reason why an infant would cry, but it does account for a lot of colic in babies. It has been over-treated with reflux medications or drops to reduce gas. I give this topic a lot of ink in Special Needs Kids Go Pharm-Free, and in this blog too. Please don’t start believing that in addition to regarding it as normal for your child to have crazy explosive poop several times a day, it’s normal for your baby to scream in pain for hours on end, months at a time.
When I was trained in public health nutrition and completing rotations as a dietitian, I never heard the phrase “toddler diarrhea”. It is now so common, no one blinks as children struggle through infancy and toddlerhood without potty training until they’re four years or older, stop growing as expected, or develop multiple food allergies and asthma. For kids with autism, it’s practically a rite of passage – often one that never ends: I have ten year olds with autism in my practice who can’t potty train, who struggle with impactions and constipation so bad they need regular hospital admissions for clean outs, and school aged kids with ADHD who can’t join sleepovers because they still wet the bed and have stooling accidents at school on a daily basis. Maybe the CDC will join up with the American Academy of Pediatrics to call this normal too. There will be a website, a CD from your pediatrician, a TV ad campaign. Followed by, no doubt, the drug of choice to fix it (mostly, it’s Miralax – another over-prescribed, non-FDA-approved-for-kids drug).
Here’s to young parents out there who are too smart to go there. Listen to your instincts and make safe choices around your child’s health care. Keep orange and purple for the fun parts of Halloween, not the horrors that can haunt your children for years.