Wednesday, May 18, 2016

Autism and Nitrous Oxide—Just Say NO?

First isolated in 1772, Nitrous Oxide was in use in dental practices by the mid 1800s.
Awhile back Ryan was pressing his cheek into his arm, my arm, my face, anything he could find. I was concerned that he was seeking pressure to alleviate pain from a cavity or worse, so began searching for a pediatric dentist who sees special needs kids. I located a practice in my town and was able to make an emergency appointment.

I went to the practice’s website to check their protocols for dealing with kids like my son—language impaired and minimally-verbal and homozygous for an MTHFR polymorphism (see my blog at for more info on MTHFR). Listed in their behavior management tab was the routine use of Nitrous Oxide (NO—an abbreviation; chemical formula N2O), although N2O should be considered an emphatic “NO” for kids on the spectrum).

Because I know of two parents whose children developed autism post-anesthesia, I’ve done some reading on the subject and have found copious amounts of research that demonstrate some forms of anesthesia are contraindicated for autistic kids—or anyone with MTHFR polymorphisms. Unlike a pathogenic mutation (one known to cause disease), a polymorphism is a variant within a gene that does not necessarily affect its function. In research articles, I've seen MTHFR polymorphisms affecting anywhere from 12% - 70% of the study population, depending on geography and ethnicity, so clearly MTHFR is not rare and the possibility of its presence in an autistic child--or anyone--should not come as a surprise.

It concerned me that a dental practice specializing in treating children with autism didn’t take the time to learn about potential serious adverse events posed by an anesthesia they routinely use to manage autistic patient care, but consider that Autism Speaks, probably the best known autism advocacy organization funded a $3.4 million grant to “train dentists on the special sensitivities and strategies needed to care” for autistic kids. On their website, Nitrous Oxide is discussed as a “generally safe anti-anxiety medicine” for an autistic child to receive during a dental appointment.
What particularly concerns me is that this piece was written by a Pediatric Dentist and a Director at the University of Colorado School of Dental Medicine. Is it only me who is bothered by the fact that potentially dangerous misinformation is being taught to future providers of dental care—and our dental schools are receiving funding to further propagate this misinformation?

The article also says, “It is important to know that dentists generally don’t receive training in the use of…sedation and anesthesia during standard dentistry education.”

Good to know. How often do we simply accept the word of the person in the white coat on what is safe for our children, who frequently have MTHFR polymorphisms, B-12 deficits and mitochondrial dysfunction? How many dentists, or MDs for that matter, are so much as conversant in these areas? From my experience, not many but we assume they have learned all of this in medical school.

Although generally regarded as relatively innocuous, research on the use of Nitrous Oxide has shown very real risks in its use, particularly in the pediatric population, those with MTHFR polymorphisms, and children with autism. Selzer (2003) reported the neurologic deterioration and death of a child who was anesthetized twice with Nitrous Oxide and attributed the child's death to the administration of Nitrous coupled with the MTHFR defect. Patients "with even subclinical deficits of vitamin B12 are at increased risk for the development of myeloneuropathy" (Pratel, 2007) and symptoms may not appear until days to weeks after exposure to nitrous oxide (Baum, 2008).

That symptoms may not appear concomitantly with the administration of anesthesia is also an important point. There is a clear bias where medical errors are concerned that if the patient didn’t die on the table, all is well. Any subsequent problems are a mere coincidence.

Further, Chen et al (2013) found leukocyte (disease-fighting white blood cells) and DNA damage following administration of Nitrous Oxide. This led to increased probability of wound infection. A quick search yielded a number of research articles positing the potential for Nitrous Oxide to cause elevated homocysteine concentrations that could lead to post-operative cardiovascular problems in clinical studies (Savage, 2014; Nagele, 2008).
Although this piece has focused on N2O because of the prevalence of use in dental practices, general anesthetics are also associated with lowered IQs, learning disabilities and behavioral issues (Jevtovic-Todorovic, 2013; Flick, 2011; Loepke, 2008). In fact, Jevtovic-Todorovic (2013) concludes, "Based on presently available evidence, it is becoming clear that regressive behavioral changes in children exposed to general anesthesia are most common in those exposed before the age of 4 years, which coincides with the time period of rapid brain development in humans." 

The purpose of this piece is not to frighten, but to inform parents of potential anesthesia risks that may be unknown even by their dentist or MD. Because our kids frequently undergo procedures requiring anesthesia, parents of autistic children especially should know their child's MTHFR and B12 status (much easier today with the advent of 23 and Me or and should make sure the anesthetist is aware of possible complications so a suitable anesthesia can be chosen. 

1) Baum, V. C. (2007). When Nitrous Oxide is No Laughing Matter: Nitrous Oxide and Pediatric Anesthesia. Pediatric Anesthesia; Vol 17: 824-830.
2) Chen, Y., Liu, X., Cheng, H. K. et al (2013). Leukocyte and DNA Damage and Wound Infection after Nitrous Oxide Administration: A Randomized Controlled Trial. Anesthesiology; Vol 8, No. 6: 1322 – 1321.
3) DiMaggio, C., Sun, L. and Guohua, L. (2011). Early Childhood Exposure to Anesthesia and Risk of Developmental and Behavioral Disorders in a Sibling Birth Cohort. Anesthesia and Analgesia; Vol 113, No 5: 1143 – 1151.
4) Flick, R. P., Slavica, K. K., Colligan, R. et al (2011). Cognitive and Behavioral Outcomes after Early Exposure to Anesthesia and Surgery. Pediatrics; Vol 128, No. 5: 1053 – 1061.
5) Hollmen, A., Joupilla, R., Koivisto, M. et al (1978). Neurologic Activity of Infants following Anesthesia for Caesarian Section. Anesthesiology; Vol 48, 350 – 356.
6) Ing, C., DiMaggio, C., Malacova, E., et al (2014). Comparative Analysis of Outcome Measures Used in Examining Neurodevelopmental Effects of Early Childhood Anesthesia Exposure. Anesthesiology; Vol 120: 1319 -1332.
7) Jevtovic-Todorovic, V. (2013). Functional Implications of an Early Exposure to General Anesthesia: Are We Changing the Behavior of Our Children? Molecular Neurobiology; Vol 48: 288 – 293.
8) Loepke, A. W., Soriano, S. (2008). An Assessment of the Effects of General Anesthetics on Developing Brain Structure and Neurocognitive Function. Anesthesia and Analgesia; Vol 106, No. 106: 1681 – 1707.
9) Nagele, P. et al (2008). Influence of Methylenetetrahydrofolate Reductase Polymorphisms on Homocysteine Concentrations after Nitrous Oxide Anesthesia. Anesthesiology; Vol 109: 36 – 43.
10) Praetel, C. (2007). Nitrous Oxide: Neurotoxicity. Complications in Anesthesia, Ch 18: 69 – 71.
11) Savage, S. and Ma, D. (2014). The Neurotoxicity of Nitrous Oxide. Brain Sciences, Vol 4: 73 – 90.
12) Selzer, R. R., Rosenblatt, D. S., Laxova, R., and Hogan, K. (2003). Adverse Effect of Nitrous Oxide in a Child with 5, 10 Methylenetetrahydrofolate Reductase Deficiency. The New England Journal of Medicine; Vol 349: 45 – 50

Saturday, April 30, 2016

Autism Is

Now that Autism Awareness Month is over, I thought I would muse about what autism is here in our Hale. I’ve seen many feel-good pieces of the so-called autistic kid making the three-point basket at the buzzer to win the game…or graduating from college with honors…or painting Rembrandt-quality portraits...or the Sesame Street version of autism, manifested by a new and slap-happy puppet named "Julia".  I decided I would jot down a few thoughts about what autism is to me, and so many others.

All of these are faces of autism...just not the kind I live with...

Autism Is:

  • Not being able to use the bathroom for even less than a minute without the terrifying thought that your non-verbal child is escaping, unable to clearly say even his name.
  • Feeling your heart pound out of your chest when you realize your child is not in the house, knowing he does not respond to his name when called.
  • Describing your child and what he was wearing to mall security.
  • Being too afraid to send your child to school because of its inability to provide a 1-1 therapist to ensure not only your child’s education, but his safety throughout the day.
  • Knowing your non-verbal child is completely vulnerable to abuse.
  • Watching your child scream in pain, unable to tell you where it hurts…or if it hurts.
  • Finding your child eating inedible items, such as the plastic from the handlebars of his bike, pieces of wood, the case to his iPad, or particularly disturbing—used kitty litter.
  • Opening the car door to let your child out with a body block in place to ensure he can’t bolt into traffic…holding his hand in a death grip when crossing the street.
  • Having countless items broken or ruined. Finding iPads in the pool or phones in the toilet is not an uncommon occurrence.
  • Realizing your imagination is finite when it comes to the things your child can do that can cause him grave injury or death.
  • Fearing your child could fracture his skull when throwing his head back onto the floor when in the throes of a meltdown.
  • Seeing your child tremble and shake uncontrollably and worrying he could be developing a seizure disorder.
  • Sleeping with your ever-growing child in your bed just so you know where he is and that he is safe.
  • Cooking with all sorts of unusual ingredients to accommodate food allergies and sensitivities to nearly every food and spice.
  • Having a teenage daughter who dearly loves her brother but at the same time is embarrassed by his behavior and sometimes resents there is little time for her needs.
  • Wondering who will care for your child when you are no longer here.

Autism is...
  • Isolating…your friends and family are completely unable to understand the reality you live with and you quickly realize most prefer idle chit chat to hearing about an Autism Day-in-the-Life, stories that frequently include poop or a meltdown. You find yourself in close on-line friendships with other autism parents, most of whom you will never meet.
  • Frustrating when you hear constantly how it is a psychiatric condition and is is a serious medical condition and is epigenetic. 

Autism is an all-encompassing, relentless and heartless beast. It is pain and suffering and grief for a lost child with a future lost. It is the realization that in all likelihood, your child will outlive you, and you are not completely sure that is a good thing.
Gosh, isn't autism just great?

Autism is not a gift; it is not “differently-abled”; it is not a cute puppet or animated character, and it is certainly not something to be celebrated with blue lights or human interest news stories. As long as the media portrays autism as the quirky genius child who just lacks social skills, there will never be true autism awareness. 


Wednesday, May 13, 2015

Hey, United! Think there might have been a better way?

So have you heard the one about United Airlines and the autistic 15 year old girl and her family they kicked off a plane this week? It’s pretty crazy, really the amount of ignorance about autism that exists today—even after all the blue lights last month to make people “aware” of autism.

Because her daughter would not eat any of the food brought on-board with the family, the mother had the irrational thought that perhaps the flight attendant (who we constantly hear are there for our "safety and comfort") would actually act like a reasonable human being and try to be helpful. Apparently the mom could not persuade the flight attendant to sell her a hot meal for her child—this remarkable privilege is for First Class passengers ONLY!--and after a half hour or so of discussion while her daughter was becoming more anxious, the mom made a comment along the lines that the flight attendant would help once her child melted down and possibly scratched someone.
This is what all the fuss was about...United can be proud their flight attendant held out til the bitter end.
The flight attendant acquiesced but apparently the mom in her desperation to keep her child calm and comfortable did not realize just how much some people enjoy lording their "power” over others. The flight attendant’s nose was out of joint--this mom had asked for a meal that she was NOT ENTITLED TO, after all--and went to the captain and portrayed this child, by now sitting calmly and watching a video as a threat to the safety of the other passengers.

The pilot, without even checking personally on the situation, felt “uncomfortable” enough to make an emergency landing, and announced to the passengers that there was a person on board with “behavioral issues”. The family of four was escorted off by police and rebooked on a Delta flight.

In a statement, United said its "crew made the best decision for the safety and comfort of all of our customers and elected to divert to Salt Lake City after the situation became disruptive."

The family being escorted off the flight by police. Overreact much, United?

So an autistic child crying or making noises is apparently disruptive to other passengers, or most likely primarily to a callous flight attendant. This begs the question of crying infants and for that matter, obnoxious adults. I’ve been on flights where babies or toddlers cried nearly the entire trip, or rowdy tourists were loudly talking and singing for much of the trip. I live in the middle of the Pacific Ocean, where there’s no such thing as a short flight and I've found myself "disrupted". I do believe a water landing could be in order...
"I'm going to HA-WAI-EEEEEE!!"
In an interview with a local news outlet, passenger Marilyn Hedlund said, “She wasn't put off the plane because she had autism, she was put off the plane because she was maybe proposing some kind of a threat, to (about) 170 other people at 36,000 feet, which doesn't make anyone feel safe.” 

“What if she got crazy and got up and opened an exit door at 36,000 feet?”

Gee, Marilyn—what kind of threat do you think she was "proposing"? How about if you “got crazy” and decided to "propose" a threat? An autistic child is certainly no more likely to jump out of their seat to try to open the cabin door than any other passenger.

Why do media outlets give ignorant, ill-informed and overall stupid people like Marilyn Hedlund any print space? Seriously—why would a news outlet think to interview some dingbat to ask her opinion about something she clearly has zero knowledge of? Perhaps we should query Marilyn to see what she thinks of US foreign policy in the Middle East.
"I didn't feel safe!!", Marilyn Hedlund, Autism Expert?
What is truly disheartening is seeing the comments from so many people who think because the family is considering filing a lawsuit against United Airlines that this is really about money, oh and besides, the mother should have prepared for every possible eventuality. Of the negative comments, these are some of the kinder remarks I've seen. FYI--there are not microwave ovens on airplanes and I’m here to tell you that no matter how much you plan, the best-laid plans are no match for real life.

I think back to my recent experience on Delta Airlines. When I arrived at the airport I informed the agent at the gate that I was traveling with a severely autistic child. They could not have been nicer.

In fact, the agent said to me, “We’ve just recently had training about autism. Just let us know how we can make this experience easier for you.”

Well, thank you!!

We flew from Honolulu to Atlanta and on to Baltimore without incident. Our return to Hawaii was another matter.

We were supposed to connect in Salt Lake City to fly home to Honolulu. Unfortunately, after boarding our connection, the plane developed mechanical difficulties prior to take-off. After being in the airport for about 4 – 5 hours, I realized Ryan would not be able to take much more. I approached the Delta agent, and he immediately reserved a hotel room for us at airline expense and booked us on a flight for the following day.

Take note, United Airlines—a hotel room, meal vouchers and shuttles to and from the airport posed considerably more expense to Delta than you giving up a meal to an autistic child, not to mention the expense of the so-called “emergency landing”. And Delta didn’t even bat an eye.
I will be flying Delta Airlines in the future.
But getting to the part of the story where no matter how hard you try, you just can’t be prepared for everything…unfortunately, Delta was not able to get our luggage off the airplane. For the average family, this would mean the inconvenience of not having clean underwear.

For us, it meant much of the food I had for Ryan was packed in a suitcase and he suffers from dozens of food allergies across all major food groups. Because of the probability of anaphylactic reactions, I can't just pick up a meal anywhere and the prepared foods I had brought for him for what was supposed to be 14 hours of travel were eaten on the plane, in the airport and in our hotel room on our 46 hour trek home. 

By lunchtime the following day, Ryan had eaten nearly all the food I had for him. All I had left were some allergen-free pretzels and two packs of nori (seaweed). I was able to get a plain chicken breast at the hotel restaurant right before leaving for the airport. We were rebooked on a connecting flight to LA, and then on to Honolulu.

By the time we boarded in LA, Ryan had eaten his nori and was hungry and tired and simply did not understand why he couldn’t eat. Adding to that, we’d crossed three time zones by this point with three more to go. After take-off, the flight attendant asked how she could help—as I was asked on every flight—and I had a steady stream of Coke coming in an effort to keep him calm. Coke is normally a very special and rare treat for Ryan, but one that ultimately doesn’t contribute to good behavior with its high-sugar and chemical content. At this point I was desperate to keep him calm and quiet and not disrupt my fellow passengers. Despite the soft drink intervention, a couple of hours after take-off Ryan was melting down and it was not pretty.

Delta had been kind enough to book the bulkhead for us at no additional cost, possibly realizing that autistic children will often kick the seat in front of them, so at least I didn’t have to deal with a passenger in front of us having their seat jerked about. I don’t want to inconvenience anyone. I really don’t. However, the preferential seating didn’t spare me from the hostile looks and eye rolls from other passengers who wanted me to know that my child is an incorrigible brat and my parenting skills are sorely lacking.

Fortunately, although Ryan did meltdown and was scratching and head butting me, no one felt “threatened” or that he might try to open the cabin door. Really, Marilyn? I did see the flight attendant speak quietly to the passengers adjacent to me, and perhaps she explained the situation with Ryan because there were no issues.

Or perhaps I was simply lucky that there was no place for an emergency landing over the Pacific Ocean, but I truly believe whatever training Delta provided their flight and ground crews with was beneficial.

Hawaii--right in the middle of the North Pacific. Nothing around but open ocean...

This is the kind of autism awareness families want. I’m not looking for free stuff or people to bend over backwards. A simple act of human kindness goes a very long way. Thank you Delta Airlines. You have earned my loyalty.

To the general public I say, “Now that the blue lights have made you aware of autism, how about a little compassion and understanding for those who need it? Don’t begrudge the few perceived perks received by those who need them.”

You may need them yourself someday.