Tag: health

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Waiting at home for a link to a video call is, in some ways, better than waiting at the doctor’s office. You’re home, after all! You can use your most comfortable chair. You don’t have to worry about getting sick from other people in the waiting room. You know where the bathroom is, you can bring your coffee in, you have all your own reading material.

But….

There’s always that nagging suspicion that the email with the conference link has been lost, and they’ve been waiting for you to connect for the last 10 minutes and will just move onto the next patient.

Which I’ve had happen.

Over the last few months we’ve dealt with Zoom, Microsoft Teams, several in-browser apps and at least one app that couldn’t figure out landscape orientation. Between school and health, we’ve had some setups where we log into an account and the system connects you to the right person, some where each meeting has its own code, and some where a week’s worth of classes will use the same code. Some send the code or URL by email, some by text message, some through a portal. A lot of them send it out right at appointment time.

None of them just, you know, call on the app when they’re ready.

I actually had to reschedule one appointment after checking in. The front office called me on the phone to do the check-in, and at the end they asked if I knew how to get onto their portal to get the Zoom link. I logged in, and waited…and waited…and waited… No new messages, and nothing in the appointment info about how to connect, only that it would be sent in a message. By the time I called back, they’d marked me as a no-show. It turned out they’d sent the link buried in a message (in their portal, of course), back when I’d made the appointment. “But it says you read this message!” Yeah…not recently.

I’ve got to wonder — if someone who does tech for a living has trouble keeping up with this stuff, how hard is it for people who aren’t used to it?

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A couple of days ago I developed a cough and measured a fever. The cough has been very intermittent, and the fever went away after a couple of hours.

Still, I went for a Covid-19 test after measuring the fever, and we all went into lockdown mode just in case. No errands or walks. Just picking up the mail. Extra hand washing. Keeping physical distance at home. It could easily be a false alarm, but with cases surging, it seemed like a good idea to be certain.

All the drive-through centers in the area seem to be closed and I had to go to an urgent care. Instead of letting people in the waiting room, they were checking us in at the door, taking a phone number, and having us wait in our cars. An hour and a half later, they called me in. After checking vitals and symptoms, they actually had me swab my own nostrils with a q-tip and put it in a sample vial.

I got the results two days later through the network’s online portal: negative!

So with the cough and fever gone, and the coronavirus test negative, we can at least return to…well, whatever this is. It’s certainly not “normal.”

(This year has brought it home that “normal” doesn’t really exist – the world is in a constant state of flux, and what we consider “normal” are just local circumstances in time and space.)

But I can go back to daily walks (masked), drive-through and curbside pickup for errands (masked), and only having to keep my distance outside the house.

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Last weekend, after spending Saturday running errands and Sunday taking care of stuff around the house, I went out to de-stress with a photo-walk at the coast, taking pictures of shorebirds, waves, sailboats, sand patterns and a zillon tiny shells. On the way back I started feeling aches and chills, and by evening I had a 101-degree fever and felt kind of like Firestorm.

Everything has pointed to the flu, and it’s been manageable with home care, so I’ve been staying home all week, alternating sick days and remote work depending on how much I can handle each day.

Meanwhile, Covid-19 has continued to spread across the world. Literally the next day, Los Angeles County announced the first confirmed case of community spread. Events are being canceled left and right, schools and museums and even Disneyland are closing, whole countries have implemented quarantines, and it’s become blindingly obvious that it’s no longer possible to contain, we can only hope to flatten the curve and keep the pandemic from overwhelming the health system by hitting too many at the same time.

It’s been a really weird week to stay home sick with something else.

On one hand it’s been kind of a trial run, which is useful. Practicing the extra hand washing, distancing, trying not to get anyone else in the house sick, all that. But on the other hand there’s the understanding that I’m probably going to have to go through it again when one of us gets actual covid-19. There’s a part of me that wants to get it over with, like being sentenced to time served.

I’m not especially worried about us, since we’re reasonably young and healthy to start with, so we’re likely to recover if and when we get it. Probably without hospitalization. But I certainly don’t want to spread it to someone at greater risk, so I’m totally on board with remote working (post-flu) and avoiding crowds.

Still, I hope that there’s a gap between when I’m no longer wiped-out/contagious from the flu and any potential lockdowns in this area (general or just our house). I’d like to be able to do supply runs, though we’ve been building up a bit of a cushion on each grocery trip. I’d like to be able to pick up takeout from local restaurants while they’re open. I may need to pick up a new thermometer since the button on this one has gotten temperamental with all the times I’ve used it this week.

But mostly I want to be able to spend at least some time outside. I get cabin fever. Tuesday I was already pacing the living room between bouts of fatigue. Wednesday I was excited to walk to the mailbox. And that’s only after a few days. I don’t need to be around lots of people. I like outdoor solitude. Hiking nature preserves. Photo walks like the one I did right before the flu hit me. Even just walking circuits around the neighborhood. If I can keep doing that, this will be a lot easier to manage.

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Discussion of food allergies tends to focus on children (for a lot of reasons), but a recent study found a much higher rate of food allergies among adults than expected. They found that 10.8 percent of American adults – that extrapolates to 26 million people! — reported a convincing food allergy (based on actual symptoms reported – another 9% reported allergies, but their symptoms didn’t match the diagnosis – presumably at least some of the rest are genuine intolerances). That’s actually higher than the rate among children found by another recent study, which came up with 7.6%.

Now, my first thought on reading this was: Of course! Kids with food allergies who were counted 10, 20, 30 years ago have grown up, and we’re adults now! But it’s more than that: There’s a lot more adult-onset allergies than anyone expected to find.

The JAMA article goes into the numbers. Of those who had a convincing allergy:

  • 48% developed at least one allergy as an adult
  • 26.9% developed allergies only as an adult.
  • 53.8% developed allergies only before turning 18

More than a quarter of adults with food allergies didn’t have them as children. That’s a surprise! And it raises questions: Is there a different mechanism that triggers childhood-onset allergies vs. adult-onset? (Other than tick bites, of course.) What about those of us who had allergies already and added more? Is there some sort of saturation threshold?

There are still a lot of unknowns about food allergies. But we do know that they can be deadly serious, and they affect a lot of people.

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If you have environmental allergies to pollen, dust, animals, etc. you’ve long had the option of taking shots to desensitize yourself to the allergen. That hasn’t been the case for food allergies. But a pollen allergy is a lot less likely to kill you than a nut allergy. Some sort of treatment beyond “try not to eat it, and use epinephrine if you do” has been sought after for a long time.

Various forms of oral immunotherapy (OIT, SLIT) for desensitization have been under study for a few years…along with an injected medication that takes a different approach.

Around 10-15 years ago, my allergist at the time brought up the possibility of Xolair (omalizumab) for my asthma, suggesting it might also help with my food allergies. It’s an IgE inhibitor, which means it blocks the pathway through which food allergies operate. In theory, it would reduce my chances (or reduce the intensity) of a severe reaction to an accidental exposure.

It was an unproven, off-label use. Xolair had only been studied and approved for treating asthma, primarily asthma that other medication couldn’t control. And it would mean regular shots. And staying in the office after each one to make sure I didn’t have a reaction to the shot itself.

Ultimately I decided not to take her up on it. It seemed like more trouble than I wanted to go to for an uncertain gain. My experience wouldn’t have even helped clarify that gain. Any close calls I missed would have just been another anecdote, the medication’s impact unproven.

A decade and a bunch of clinical trials later (some alone, some in combination with OIT), the FDA has given Xolair a “breakthrough therapy designation” for treating food allergies. That means fast-tracking further reviews and development as a treatment. (more detailed article.)

There’s still risk/benefit analysis to do (in general and on a case by case basis), but things are starting to finally look up in terms of being able to treat the condition instead of trying to detour around it!

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OK, this is a bit morbid, but bear with me.

Most news stories about deaths from food allergies feature children or teenagers, maybe young adults in their twenties. You read about grieving parents. You rarely read about the 40-year-old who leaves behind a grieving spouse and kids.

Food allergies send a lot of people to the emergency room: 200,000 annually in the US alone according to FARE. Almost all are successfully treated. But people do die from anaphylaxis, roughly 63–99 each year in the US according to AAAAI.

So why are the fatalities we hear about so young?

Is it just demographics? Allergy prevalence has been increasing, after all, so kids are more likely to have food allergies than adults are.

Newsworthiness? A three-year-old dying at day care tugs at the heartstrings in a way that a 38-year-old dying from takeout doesn’t.

Is it onset age? A reaction is more likely to kill you if you don’t know about the allergy yet, don’t know you need to carry epinephrine, and don’t know that the warning signs mean “hospital now!” and not just “lie down and try to get through the asthma attack.” By the time you’re an adult, you’ve probably already encountered everything you might be allergic to, so you’re less likely to get that surprise first reaction. It happens – I’ve known people who developed shellfish allergies as adults, and I found my own nut and peanut allergies expanding their range in my early 20s – and there’s the Lone Star tick – but it’s less likely.

Are adults more careful? Teenagers take more risks. Children often have to rely on secondary caregivers who don’t always have the training or understanding that their parents do. And of course, the longer you deal with something, the more it becomes second nature. Is it that we’ve gotten better at avoiding triggers, keeping our medication on hand, and seeking treatment faster?

Are you more likely to have died of something else in the meantime? According to one NIH study, “Fatal food anaphylaxis for a food-allergic person is rarer than accidental death in the general population.” So the longer you live, as long as you’re taking precautions with the allergy, chances are that something else will kill you before the allergy can.

I suspect all of these are factors, but I do wonder how they balance.

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If you are told a child in your care has a severe food allergy, believe them. Don’t kill a three-year-old with a grilled cheese sandwich.

According to his parents, staff at the preschool knew about his severe dairy allergy, but an adult gave him the cheese sandwich anyway. He ate it, went into anaphylactic shock, and died in the emergency room. No word on whether they gave him epinephrine. (New York law allows schools to stock it, but doesn’t require them to.) Update: Apparently the school called his mother instead of 911. Want to bet paramedics could have helped?

“We will get to the bottom of what happened here…” says a spokesman for NYC’s health department, “and whether the facility could have done something differently to prevent this tragedy.” Well, yeah: Don’t give kids food that you know they’re severely allergic to!

Children with severe allergies know to avoid certain foods, but they need help to do it:

  • It takes time to learn how to avoid all forms of food you’re allergic to. I was seventeen before I learned that cross-hatches meant peanut butter cookies, because we’d never had them in the house. (Incidentally: that was the first time I actually used an Epi-Pen.)
  • Some foods have substitutes that look and taste similar enough that you could take a bite — and it only takes one bite — before discovering it’s the real thing. Sunflower seed butter for peanut butter. Daiya for cheese (and yes, you can make a grilled Daiya sandwich).
  • Ingredients can be hidden. There are an awful lot of pasta sauces that look like standard tomato sauce with herbs that also have cheese in them.
  • Kids that young have no choice but to trust the adults taking care of them. There’s a power difference. If you trust someone, you’re less likely to double-check them. And when you’re not sure? Not all kids can push back against an insistent adult, especially one they’re accustomed to depending on. (Keep that issue of power imbalance in mind when you read other stories in the news today, too.)
  • Preschoolers aren’t exactly known for their impulse control, so even the ones who have the courage to self-advocate won’t always stop to check before taking that first bite.

Maybe it was someone new who didn’t know yet. Maybe it was someone who didn’t take it seriously. Maybe there was a mix-up and he was supposed to get something else, but they handed him the cheese sandwich by mistake. All of those could have been prevented.

Yes, mistakes happen. Even fatal ones. But they happen a lot less often when you listen to people who are facing the danger, believe them, and take action to follow through on it.

1 in 13 children has a food allergy. Even if your child doesn’t, they have friends who do.

Don’t let them down.

Update on the case from Allergic Living (Nov 16):

The incident is still under investigation. It’s not even clear at this point whether the specific person who gave him the sandwich was aware of the allergy (though they certainly should have been), or whether they gave him epinephrine, though it is clear that:

  • The school was aware of his allergy
  • The school didn’t call 911, they called his mother instead.

The school has been closed pending the investigation results, and new directives have been issued that childcare staff will call 911 in the event of a medical emergency.

Another update from Allergic Living (May 2018):

  • The preschool didn’t tell Elijah’s mother that he’d eaten, so she thought he was experiencing an asthma attack. (This is also how I interpreted my first anaphylaxis experience at 17: as an asthma attack that didn’t respond to my normal medication. I didn’t know it at the time, but I could have died.) He didn’t get epinephrine right away, which might have saved him.
  • NYC has launched a major training program to help preschool staff understand and handle food allergies and anaphylaxis.
  • Elijah’s parents have been active in raising awareness of severe allergies in the community and online.