Are you a Difficult Parent?

A recent article in Pediatrics examines how pediatricians can manage their relationships with "difficult" patients and parents - those who are clingy, demanding, manipulative, or self-destructive ("Approaches to the Difficult Patient/Parent Encounter").

A litigious father, for example, complains angrily about the diagnosis for his 7-year-old son. A 15-year-old girl constantly challenges her pediatrician's advice. "Patient/parent issues can include psychiatric disorders, personality disorders, subclinical behavior traits, and information overload," the authors write. These patients and parents are no doubt difficult to handle.

But then the authors write that

Parents of children with chronic illnesses may be considered challenging; these parents are vulnerable or even frantic because they are coping day after day with an ill child. Despite recent clinical advances, many chronic diseases cause great suffering and uncertainty.

And I started to wonder whether some doctors simply had compassion fatigue. Often, it seems, patients (or their parents) are difficult because they don't think they are being heard or understood. Sometimes, being a good parent and means being a good advocate for your child's well-being - and therefore being difficult. 

Studies have shown, for example, that the most common type of medical error, medication mistakes, are especially common among pediatric patients. I've written before about radiation overdoses from CT scans that are not calibrated appropriately for children. Parents need to understand these problems and ask questions when their children need a medication or procedure. If they don't understand the answers, they need to ask more questions until they do - no matter how busy the doctor or nurse might be.

And so for 2011, I'm sending out good thoughts to all the parents out there. I hope they ask questions, get the answers they need, and participate actively in their children's health, in the doctor's office and at home. Because if your kids are doing well, you don't need much more than that.

Fireworks, California Style

Where I grew up, my town put on a spectacular independence day fireworks show every year on the football field at the local high school. My neighbors and my family also lit Roman candles, sparklers, firecrackers, and who knows what else on our block. It got so noisy that one neighbor had to sedate her skittish dog each year.

Here in Northern California, though, it's a different story. The fourth of July falls at the worst time of year for fireworks: the dry season and the foggy season (yes, these two seasons co-exist; the cold marine fog creeps in along the coast all summer long, pulled by the heat of the Central Valley to the east, but the rains generally don't fall from June through September).

Years ago, a friend and I hiked to the top of a hill with a view of downtown San Francisco, wrapped in thick coats against the fog, to watch the fireworks show. Undeterred by the weather, the city shot the fireworks into the fog. Although I heard the booms when they were lit, all I could see were a few pale colors reflected in the overcast sky. Fun.

Putting on your own fireworks show with store-bought ("consumer") fireworks is not an option for most people here. It's illegal to set off your own fireworks in many Bay Area cities (including all of San Francisco and Marin counties), because of the dry-season fire danger and the risk of personal injuries.

The bottom line is that safety laws, combined with the often fog-shrouded coastal fireworks shows, mean that the Fourth of July celebration out here is, well, a dud.
 
Yes, fireworks are dangerous; the tips of sparklers get as hot as 1200 degrees Fahrenheit (!), according to the National Fire Protection Association. Because children are most likely to be injured by store-bought fireworks, the American Academy of Pediatrics (AAP) is opposed to all consumer fireworks.

The few local towns here that do permit consumer fireworks only allow "safe and sane" fireworks (in general, fireworks that are not shot into the air). In these towns, nonprofit groups often sell consumer fireworks as a fundraiser, providing much-needed funding in a time of budget cuts. Many of the groups are raising funds for charities that benefit children (hoping, of course, that children don't light their wares). 

Are consumer fireworks more fun than dangerous, or more dangerous than fun?  This issue raises perhaps the most fundamental question facing today's parents: should we let our kids do what we did?

Most years we've just thrown up our hands and skipped the whole fireworks thing. This year, though, we drove our fireworks-deprived kids to a rural town to watch a fireworks show.

Fortunately, the day was fog-free, and it stayed clear as it got dark. The kids squealed with delight when the first firework went up and lit up the sky with a flower shape. They had never seen a live show before, and for the next half-hour, they ooohed and ahhhed their way through the display.

It was more subdued than the celebrations I remember from my childhood, but it was good to give them something to watch.

Parents and Infant Swim Lessons

A recent article in the San Francisco Chronicle on infant swimming shined a light on the psychology of parents in the Bay Area. The article discussed the American Academy of Pediatrics' official policy statement on infant swimming programs, in light of a local and nationwide boom in these programs. The AAP argues that children are not developmentally or cognitively ready to swim safely until they are four or older, and learning to swim earlier may give parents a false sense of security.

Despite these warnings, the popular and expensive La Petite Baleen program in the Bay Area, which often boasts a waitlist to get into classes, begins training children to be submerged in the water when they are just two months old. A new La Petite Baleen site is slated to open in June in the Presidio in San Francisco, and there are already 1,000 children enrolled, the article stated.

New parents are marketed to relentlessly. I still remember the box of formula that the postman shoved through my gate when I was pregnant with my first child (a product that I didn't want or need), and the mailings I received from Gerber and other companies who knew my due date, probably because my doctor's office had sold them the information. I heard a constant drumbeat of advice and buying information as a new parent, some of it from valid sources and some not.

I succumbed to the marketing as well, I think. Did I buy a Britax car seat and a Hanna Andersson jacket for my daughter because they were the best items on the market, or because being able to afford these things was a marker of my social class as a parent? I probably made these purchases for both reasons. Similarly, I think that the popularity of infant swim classes also has an element of status in it.

Are parents enrolling their young children in La Petite Baleen classes because they think that the AAP is wrong and swim lessons are good for infants and toddlers? Perhaps. Equally compelling, I think, is the social status that attending the school confers to the parents, which trumps anything the AAP says.

ABC, the AAP, and Autism

I've been thinking a lot about the American Academy of Pediatrics’ recent protests of the January 31 pilot episode of the ABC television show “Eli Stone.” In the lawyer drama, a mother receives a $5.2 million settlement after she charges that the mercury-laden preservative thimerosol that was used in a vaccine caused her child’s autism. Since many children are diagnosed with autism around the time that they receive a number of vaccinations, some people have linked these vaccinations with autism, especially the MMR (measles, mumps, and rubella) vaccination.

A small but influential 1998 study suggesting a link between thimerosol and autism was later retracted by its authors, and researchers have since found no link between vaccinations and autism. Furthermore, thimerosol was dropped as a preservative in standard vaccines in the U.S. in 2001.

Some parents still refuse vaccinations for their children, though, due to concerns about vaccine contents and the possibility of rare complications. Their choices have lead to regional, sometimes fatal outbreaks of measles and whooping cough (pertussis) among unvaccinated children. Right now, for example, there is a measles outbreak in San Diego, with ten unvaccinated children and infants infected and over fifty quarantined.

The AAP only fueled the vaccination debate, however, with an emotional press release in late January, calling the “Eli Stone” pilot “the height of reckless irresponsibility.” In the letter, AAP President Dr. Renee R. Jenkins says that “if parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation’s children.” The AAP went on to authorize the early release of a February Pediatrics journal article showing that infants expel the type of mercury used in thimerosol over ten times faster than they expel the type of mercury often found in fish. Some researchers believe that if heavy metals such as mercury build up in the body, they might cause autism.

But what this debate really comes down to is parents’ fear of autism, a fear that is especially acute in the San Francisco Bay Area where I live. A CDC study released in 2007 that looked at autism spectrum disorders in selected regions of the country found an average rate of autism of about 1 in every 150 eight-year-old children. Earlier estimates had suggested autism was much less prevalent, as low as 1 in 500 children. The CDC pointed out that it’s unclear whether the autism rates are increasing over time, or whether it is simply being diagnosed and reported more accurately.

Still, no one knows what causes autism, and a quick glance at the numbers makes it look like an epidemic. When I had my first child, I, too, was told by well-meaning acquaintances that mercury-laden vaccinations might cause autism, one of a long list of things to panic about as a sleep-deprived new Mom. If I had my child vaccinated and she developed autism soon thereafter, would it be my fault if the light in her mind dimmed? Was I willing to take that chance?

By the time my children were born, though, thimerosol had been pulled from the vaccines, and pertussis was making an alarming comeback in San Francisco among unvaccinated infants and adults whose pertussis vaccinations had worn off. My children were vaccinated.

There is a frightening childhood illness for every generation, it seems. At one time it was polio, until Jonas Salk developed an effective vaccine for it in the 1950s. My great aunt had polio as a young woman (luckily she recovered fully). My mother, who grew up in the Bay Area, remembers driving by San Francisco’s Shriner’s Children’s Hospital on 19^th Avenue with her family, where many of the young polio patients were dependent on iron lung machines, wondering if that would happen to her. Today, the old Shriner’s Hospital is a retirement community next to a row of modern townhouses, and thanks to the vaccine polio is almost completely eradicated worldwide.