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Living with Autism


February 17, 2015

Fun Times in the ER with Autism

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It was approximately 2:45pm, on a Friday afternoon. Our severely-autistic son was attending his Autism Day Program for Adults. Day had been semi-uneventful. Hours of stimming, episodic vocalizations and happy walking. Brief pauses to raise an eyebrow and exam brightly colored logos on other people’s t-shirts.

Tranquil moments of sitting in a small group listening to a guest guitarist. A car ride into community to eat lunch at a park. A transition back to program. Nurse applied seatbelt. All hell broke loose. Fists flying into his head. Screaming. Biting his hands. Breaking skin. Blood. Nobody could be sure why. Was it a simple matter of transition? Was it a sudden headache? Stomach pain? Thirst? Hunger? Wet diaper? The only clue we had was he had previously presented with difficultly sitting. We had given ALLEVE. Applied ice packs. Tried hot tub. Gave Risperdal. Nothing worked for long. It never does when pain is involved.

Perhaps, he had tolerated this mysterious pain for too long, and this was the final straw? Autistic people often have a high tolerance for severe pain. Yet, ironically they can have hyper-sensitivity to something mild like a blister. No blisters to be found.

Non-Verbal Autism, or rather an autistic person who can’t communicate, is like dealing with an infant. In the absence of being able to tell us if he was in severe pain, nobody could be sure if the etiology to ‘difficultly sitting’ was behavior or medical.

Difficultly sitting began 5 days prior when our son exhibited SIB (self-injurious behavior) on the car ride to his Autism Program. His 1:1 nurse assigned to him worked through it, like so many parents, caregivers and home health nurses ‘work through’ behavioral meltdowns in autistic individuals. But if you understand severe autism, you would understand that not every behavioral meltdown is behaviorally motivated. And it takes time to analyze and rule out. 

It seems by Friday, he was so determined to escape the seatbelt, he bit himself and repeatedly tried to wiggle his way up from sitting, causing mild abrasions to his sides. For those who understand severe autism, this would further illuminate this is not behavioral. Mainly, because this is NOT his “baseline.”

In essence, our autistic son normally enjoys car rides. Another clue was his refusal to sit in the bath. He normally sits in the bath for up to an hour. Yet another clue was refusing to sit and eat meals for more than a few seconds. He normally loves to sit and eat his meal. Still another clue, he hadn’t wanted to lay on his back to watch movies. Normally, at exactly 5:40pm, after a bath, he loves to lay on his back on watch movies.

So, here we are on Friday. “It’s not safe to transport him,” the nurse texted me. Shit, now what? No other choice. Nurse called 911. When the paramedics arrived our son was calm, making the nurse, staff at Autism Day Program all look crazy for calling. “What seems to be the problem,” asked the paramedic. ‘He’s punching himself in the head and won’t let us transport him,” the attending nurse explained. “I see,” said the Paramedic helping to place him on a gurney. Everything seemed just fine. 

A few seconds passed. That’s when the paramedic saw a sudden full-blown head-punching episode. Paramedic spun around to look. “Get the restraints,” he told firefighters. When ambulance got to hospital, Paramedic was told to “wait in line.” Then our son broke out of the restraints. Paramedic asked RN in ER for restraints. “You can’t restrain the patient without a doctor’s order,” she barked. Paramedic was not pleased. “He’s my patient right now, we need restraints!” Another Paramedic from another fire department saw the ruckus. “Here man, use ours,” he said, tossing him restraints. Paramedics are awesome. 

This lifted our son out of the waiting line and into an ER room, where ER staff could close the door and hide him from the shocked reaction of others. 

By the time I arrived, there were 4 RNs and a massive security guard named “Boris,” restraining my son on the ER bed. My heart sank. Not again.  Oh, Jesus, really? I had brought my son’s favorite drink. Ensure. “Ok, how about let him go for just a second to allow him to self-soothe,” I suggested. “No, we can’t,” snapped one of the RNs. “He’s trying to hit himself.” Welcome to my world.

As I approach my son, I show him the bottle of Ensure. His eyes fix on it. He tries to sit up. An RN gently, but firmly pushes him back down. “Let him sit up,” I said. “He may want a drink.” That's when “Boris,” spoke.

“Boris” was a rather massive man with a Serbian accent that a normal rational person would not choose to argue with. “LISTEN to hiz MOTHER,” he said in a thick accent. Everyone’s hands left my son’s body. He lunged foward. Drank the entire Ensure in one long sip. Then started hitting his head again. Okay, well, at least we got him some hydration and a few seconds of peace.

A Physician’s assistant (PA) arrived. I explained my son’s “baseline.” Current presentation. The fact he can’t talk being a major problem in determining what’s wrong.  PA ordered numerous CT scans to rule out back injuries. I love PAs. Not once did he insult, doubt or otherwise downplay my concerns.

To sedate before CT scans, an IV was started. Ativan. Morphine. An IM of ZYPREXA. Blood drawn. Lab results showed LACTIC ACIDOSIS. What? I knew lactic acidosis is common after a seizure, but he hadn’t had a seizure for a few days. It’s also common with liver problems. Oh, no. Not another problem. I asked RN to show me labs. I noticed a liver test: Aspartate aminotransferase (AST) was 76. Typical range is 10-40. Apparently, this wasn’t important to tell me?

IV hydration fluids used to decrease lactic acid. It became an overnight in the ER with my son. Two hours later, two tonic-clonic seizures, lasting 45 seconds each. Call button. PM floater RN didn’t recognize a tonic-clonic seizure. “Is this was he normally does?” she asked. Well, yes, uh, he does have seizures, but we aren’t here for seizures, we’re here for an unknown, possible lower back issue that’s causing SIB,” I said. “What’s SIB?” she asked. Oh God help me. Google it later, just get the doctor.

Thankfully, attending MD did understand what a tonic-clonic seizure is and that we weren’t there for “seizures.” More Ativan. 4LP oxygen, nasal cannula. Resting. Resting.
Too long past midnight, another MD in a white coat appeared, as if a ghost in a dream, since I hadn’t slept well that week, and since he spoke in a garbled, growling tone. He must have worked a double shift. Or he was a week from retirement.

I was later told CT scans “looked normal.” I asked about an MRI, since CT scans don’t always show what’s wrong, depending on what’s wrong, and since we don’t know what’s wrong, and what’s wrong is causing acute increase of severe SIB, and he’s already sedated, why not? “I’m not ordering an MRI,” said the MD. “You’re son’s autistic." 

Really? OH MY GOSH. I never knew.

“Do we know the etiology of what’s going on,” I asked. The MD’s eyes lit up, as if I’d desecrated the discipline of phonetics. “It’s EEEE-tiology,” he snarled. Well, pardon me doc, I didn’t realize pronouncing etiology was more important than my son’s medical issues. FML. 

Before we left, nobody told us how to treat elevated AST and I was so exhausted I forgot to ask. (At home we would give natural supplements, NAC, which you can purchase over the counter, and is the antidote used in hospital settings for acetaminophen overdose). And I’d have to call Primary Physician to get a repeat AST, since no repeat AST lab was done before we left. 

“He’s stable for discharge,” announced an RN. Amazing how fast hospitals discharge autistic patients. When we left--in the hospital’s definition of “stable condition”--it was SIB (self-injurious behavior) all the way down the hospital hallway, each RN perched in front of their computer, looking away, and into the car, and half way home. 

Nobody from hospital bothered to help us down hallway or to the car. 

Thankfully, there was still enough morphine on board to allow for a semi-safe ride home. 

On the discharge paperwork, the doctor wrote reason for treatment, “AUTISM.”  

Under special instructions, it read: "Increased self-injurious behavior due to possible back spasm." Nothing about lactic acidosis or elevated AST labs. 


Consider Medical Causes for Elevated Behavioral Emergencies in Non-Verbal Autistic Patients. 

For example: 

1.      Autistic patients taking Depakote (Valproic Acid): consider VPA- induced HYPERAMMONEMIA the trigger for elevated behavioral problems. Imagine being a non-verbal autistic person with Hyperammonemia. How terrifying this would be. Hyperammonemia causes hepatic encephalopathy (accumulation of toxic substances in your liver) along with elevated astrocytes causing excitotoxicity (feels like brain is on fire).  Meanwhile, an ER doctor who has little if any knowledge about autism may think sudden behavioral meltdown is simply rooted in autism, so ER doc consults a psychiatrist who then suggests anti-psychotics, which further exacerbate hyperammonemia, which then leads to worsening of behavioral and introduces more health problems. 

(See “Combination treatment with liver enzyme-inducing AEDs and antipsychotic drugs increased the risk of VPA induced hyperammonemia” http://www.ncbi.nlm.nig.gov/pubmed/25192484)

Solution: Check ammonia levels in autistic patients on anti-seizure medications, especially Valproic Acid, who present with increased behavioral problems----before prescribing anti-psychotics. Lactulose reduces elevated ammonia.  Stop with the damn antipsychotics! Autistic patients are not psychiatric patients. They don’t need more psych meds, unless there’s a diagnosed chemical imbalance in the brain. Or must be used to sedate for diagnostic testing. (Many non-verbal autistic patients have extreme behavioral reactions during undiagnosed unresolved medical issues). Remember: the autistic non verbal patient can’t point to where it hurts or tell you “I’m not feeling myself today…”

Here's another scenario: 

2.      Autistic patients with chronic seizures: Consider LACTIC ACIDOSIS, especially when presenting with inability to sit for prolonged periods, exercise intolerance, fatigue, irritability, lethargy, difficulty getting comfortable in bed, gagging (from acid build-up) and steadily increasing behavioral meltdowns during situations that normally make them happy. In short, they are NOT AT baseline behavior. Lactic acid build up is painful. When in pain, non-autistic persons use self-abuse or aggressive outbursts as a desperate cry for help. Help them. Don’t hyperfocus on their behavior, as if you’re treating a psych patient. Focus on what is medically causing an extreme change in baseline behavior.

·        Solution:  According to medical research: Check lactic acid levels, blood glucose, urinary ketones, urea and creatine, calculation osmolar gap. Acute treatment: monitor cardiac rhythm (lactic acidosis can cause dysrhythmia & fibrillation), supplemental 02, IV line-fluid repletion normal saline. Banana bag (calming effects of B1 & magnesium). Consult neurologist (as one doctor advised us) Find strategy to reduce lactic acid via effective management of uncontrolled seizure activity. That way you are managing the ETIOLOGY of the lactic acid build up. Conversely, if controlling seizures still produces lactic acidosis consider medication induced lactic acid, nutritional deficiencies (B12, B6, D3, low Calcium) or Malabsorptive syndromes (commonly found in autistic patients). 


EricasBold said...

I would sue, and never return to, this hospital. That was horrible. How recent was this incident??? I am a new follower who found your videos on youtube. Do you have Facebook or other social media??

SmellofInsane said...

Oh gee, that's horrible! I love Jamey and your guys' YouTube channel. I'm starting my own of my Autistic daughter, at https://www.youtube.com/c/RaesWorld0667?gvnc=1, can you give me any advice? Thanks, in advance. May God be with you and your child, forever.

SmellofInsane said...

Wow, that's horrible. Well, I have to say, that Jamey is adorable and I'd love for him to meet my daughter. She's also severely autistic, and constantly SIB's. I hope that our children can one day get better. I'm starting my own YouTube channel for my autistic child, can you give me any tips? My starting account right now is https://www.youtube.com/c/RaesWorld0667?gvnc=1. Thanks in advance

Roger Kulp said...

My mother and I have been where you were many times in the past.I have one word of advice for you.Please skip the regular doctors,and ERs,and find a MAPS doctor.


MAPS doctors are the only ones who will run genetic and metabolic tests on someone whose only diagnosis is autism.Especially an adult.

If you read the comments I post at other blogs,you know I have a past history of both self injury,and blackouts that lead to wandering.You also know my original autism diagnosis was one of being verbal,but otherwise very low functioning in every other area.And that I have a diagnosis of Cerbral Folate Deficiency,and (currently) probable,or suspected,mitochondrial disease.Autism like I have is very common in mitochondrial and metabolic disease.

I can tell you that my episodes of self abuse were very likely undiagnosed seizures.This episode sounds like a classic seizure.Take it from someone who has been there,during episodes of self abuse,you are neither aware of what you are doing,or have any control over your actions.Cerebral folate deficiency was the cause for me,but from the clues you give me here,it is possible your son may have a mitochondrial disease known as MELAS Syndrome,or

Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes.

MELAS can cause lactic acidosis,seizures,autism,and intellectual disability.

Like cerebral folate deficiency,MELAS is a treatable cause of autism,and intellectual disability.





Please find your son a MAPS doctor ASAP.He may have something very serious going on that he may die as a direct result of.

Southeast Mom said...

I hope your son's SI has calmed now and I thoroughly and sadly understand your frustrating experience in the ER ( and daycare). My son is non-verbal and adult also and it is a guessing game all too often. He doesn't have issues with SI, but he does have seizures and agitated spells. You are definitely in my thoughts and prayers.

Jennifer said...

I have a young son that exhibits SIB and he does have autism. I have learned much from your videos and blog. Thank you. On another note. I hope you and your family never go back to that hospital. Your son deserved better treatment.

Genvo Agustsson said...

Has he tried hyperbaric oxygen therapy?

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