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Living with Autism


February 25, 2015

Avoiding Medical Neglect of Autistic Patients

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1.     MYTH: Autistic patients with behavioral issues are acting out in hospital because they aren’t in a familiar environment or they “miss their family.”
REALITY: Parents of autistic children aren’t morons. Our children were ‘acting out’ and “agitated” in their familiar settings, such as home, day treatment programs and classrooms BEFORE they got to the hospital, which is exactly WHY they ended up in the hospital. So, not being in a familiar setting isn’t the problem here. Please don’t oversimplify things.

2.      MYTH: Autistic people have behavioral meltdowns simply because they are autistic.  We don’t need to investigate any medical issues. It’s just autism.

REALITY: Autistic people have baseline behaviors like any other person. When their behavior suddenly and dramatically changes, it may be a sign there is an underlying, undiagnosed medical issue going on. Think about babies. They can't talk. They cry daily. Yet, when that cry becomes wailing for days, you know something is wrong. Ditto Autistic patients with self-abuse. YES, they may have self-injurious behavior (SIB). Yet, when that SIB CHANGES..and it goes from baseline to crazy non-stop SIB, something is wrong.  Non-verbal autistic people often use extreme self-abuse and increased aggression to communicate pain or discomfort because they can’t tell you what is going on. And what is going on is much more intense in their mind, than what you or I would feel. You must investigate and rule out, until something is found. These are vulnerable patients. You can’t treat the autistic patient the same way you would treat a non-autistic patient. They are unlike any other patient. They present differently. They often have extreme tolerance for pain, but that doesn't mean they aren't in pain or discomfort. They are able to handle it better than we would, for longer, which makes them more vulnerable to misdiagnosis. Never assume they're fine without at least a basic lab work up and exam when they're presenting off baseline.

Consider the case of an AGITATED autistic boy discharged from a hospital, who died two days later. A simple blood test and IV hydration would have saved his life.  According to news reports,

The hospital assessed Harry (the autistic boy) as a category 2 patient, which suggests that he should be seen more urgently than someone coming in off the street, and he was found to be dehydrated. Doctors wanted to run blood tests and put him on a drip to rehydrate him, but when Harry was transferred to the Children’s Assessment Unit he was becoming distressed as the family were left waiting for hours. Because it did not appear that lab tests or IV drip were going to be carried out the same day, given the long period in which parents had waited, his parents asked if they could take Harry home in order to allow him to get some rest, and to return the following morning, which the doctors agreed to....The following day the doctor said Harry seemed better and he was discharged saying a blood test and other investigations were no longer necessary. His condition remained the same throughout the next day until little Harry collapsed and turned blue. He was rushed to hospital by ambulance. Resuscitation attempts were unsuccessful. Harry died. A blood test was carried out during Harry’s attempted resuscitation. Blood test revealed there were high levels of sodium in his blood, which is often seen in cases of severe dehydration and is quite common in young children with learning difficulties and special needs. The results of a peri-mortem suggest that Harry’s cause of death was due to severe dehydration and acute kidney injury.”

3.      MYTH: Blood tests, CT scans and MRIs are too hard to do with autistic patients because they become agitated. We don’t want to upset the autistic patient.
Reality: That’s why sedation and temporary restraints exists. Go the extra mile, if necessary. Surely, it will be cost effective to diagnose the problem compared to multiple stays in the hospital. Don’t ignore diagnostic testing simply because the autistic person is a difficult patient to sedate or you need to temporarily restrain to get proper diagnostic or treatment going. Get the tests done.  Consider the case of the autistic man who punched himself in the ear for years, and then one day, a test revealed he had bone infection that didn’t show up on labs. Or the autistic man who had undiagnosed gut issues that were driving him to beat himself. Yes, some self-abuse and aggression in autism is behaviorally related, but listen to parents and caregivers when they tell you, “This is way off baseline, something is wrong.”

4. MYTH: Parents of autistic children come to the ER room because they want a break.
Maybe some do, but I sure don't. I don’t want to be in the ER room, trust me. I hate going there. The smells. The sounds. It makes me sick. The only reason my son ends up there is because we were out of options and desperate to help our autistic adult child. We have no other choice. We depend on the expertise of doctors and professionals to help autistic children, no matter their age. This is the age of autism, we can’t turn our backs on this vulnerable patient population. We must continue to find ways to better diagnose, quickly diagnose and properly treat this very special population. 

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). 

February 16, 2015

Autism and Epilepsy: Only Time Will Tell

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryAs if life with severe autism (for which there is still no cure) and self-injurious behavior (for which there is still no cure) isn’t enough stress and worry, add to the mix recurrent seizures.

Witnessing your autistic child go into a tonic-clonic seizure is something you never forget. Never get used to seeing.

Eyes twitch. Limbs shake. Agonal respiration. Always fear and panic. A sense of helplessness and hurt. You just want it to stop. 

You want to fix this action-potential-sodium-channel gone awry. You want to save your autistic child from seizures.

You can make most seizures stop--with an IM injection of Ativan or PR administration of Valium. You can protect your child from falls. You can help them breath, by applying oxygen. 

This doesn’t fix the problem. This doesn’t cure epilepsy. Seizures will happen again, even when there is a lull. You never know when they will strike. You live in constant worry. In the evenings and early mornings, you are tormented by a sudden twitch, fluttering of the eyes or change in respiration.

You dutifully make another neurologist appointment. There is talk of new meds. Re-introduction of old meds. Adding and subtracting meds. You can never be sure. You’ve become a regular at the pharmacy.

You religiously read medical research on seizures and epilepsy until your own eyes twitch. Every study mentions “further research needed.” Not one says, “No further studies required….We found a cure.” 

That’s because, silly goose, there is no money made in curing epilepsy.

Not with 65 million people worldwide currently suffering with epilepsy. There’s a lot bucks to be made. Why cure. No way. What do you want from us? We’re funding drug trials. We’re spending money to make money. Just take the drugs that don’t work, sort of work and cause side effects. No worries. It’s all good. We have drugs for each side effect.

You come across an “analyst note” and “investment thesis” written by a CFA (chartered financial analyst). CFAs are mostly employed by banks, corporations and lucrative pharmacy companies. Not that there’s anything wrong with lucrative. Just wrong that lucrative never leads to a cure.
The CFA talks about a new drug that has “blockbuster potential.” Specifically, in the ‘next big disease market’, as if she’s analyzing a screenplay. You are baffled on every level by this kind of thinking. It’s like listening to politicians who never see a classroom filled with children. They only see “potential voters.” You know the type. 

Is there a better type? Is there a better medicine?

You search for medical cannabis news on autism and epilepsy. It’s been discussed on Dr. Oz, CNN and in bath-tub reading magazines. You discover cannabis comes in many “strains.” Each strain may have a different mechanism of action. Like the difference in action between Morphine and Ritalin. This is kind of serious, you know. You notice some names for various cannabis strains are named after a celebrity. Willie Nelson. Marilyn Monroe. Stevie Wonder. You wonder if this is a joke. It’s not.

You see how desperate other parents have become, for good reason. You see lots of talk about money made in medical cannabis dispensaries. And how many people are paying out of pocket for this hopeful “medicine.” It was their “last hope.” Is it?

You wonder if you should go back to the neurologist and ask for an orphan drug. You never want to be out of options when you have a child with autism and epilepsy who needs help. You’ve already been told “I’m sorry… were out of medication options” by a psychiatrist who read all the failed blockbuster FDA approved drugs for autism and self-injurious behavior.

You certainly don’t want to hear that nonsense from a neurologist. You read about an orphan drug that looks promising. You imagine it may be a blockbuster drug that makes a company a lot of money, but you really don’t care, so long as it helps your child and doesn’t assault their liver and kidneys. 

Updated analysis: A study shows Epidiolex looked at 27 patients at baseline treated for drop aka"atonic" seizures. Epidiolex reduced atonic seizures by 55% after 12 weeks on Epidiolex. And with no clinically astounding changes in hematologic markers or renal function. Indeed, side effects were "moderate and transient." 

Source: (Devinsky et al, Treatment Resistant Epilepsy. American Academy of Neurology, Annual Meeting, April 22, 2015)

Only time will tell. 

If you understand what I'm talking about, you wish time would move as fast as you do when you see your autistic child go into another seizure because every time your child has a seizure time stops. You are activated into emergency mode. Nothing else matters but stopping these seizures. Getting help. Finding cures. You just want this nightmare to end. You want peace. You want prompt medical care. You are tired of waiting. You are tired of the let's wait and see and try another conventional drug or elevate or decrease drug ambiguity. You just want your child to lead a more productive, meaningful life. Surely, this is not too much to ask, right?