Further Reflections on Anaphylaxis

This past week has been a blur; a swirl of emotions and learnings. On Sunday, Colten (my older son) had an anaphylactic reaction (he's fine now- read previous blog post) and I've been so grateful for the support of family, friends and even friends-of-friends in the wake of the incident.

The biggest thing I've come to realize on a very personal level is 1) I'm so glad for all our preparation and 2) there is a difference between theoretical preparation and practice and in-the-moment, crisis management. I know this well in my professional life, but it's different when it's your child... a piece of your heart.

So I'm driven to extract as much learning as I can from the situation. I'm currently reading Adam Grant's "Originals" and really identify with the "defensive pessimism" he illuminates- deliberately utilizing/thinking about an emergency scenario in order to consider the worst case possibilities, drilling into all aspects in order to avoid disaster.

Here's what has emerged in sharing my story with friends and family- additional ideas and reflections:

1. "Find My IPhone" is Your Friend

We had this function enabled on Colten's phone, but didn't think to use it to locate him. What a stress-reducer that would have been as my husband combed the Golden Gate Bridge for our child in an emergency. And in general, a good thing to remember as he gains independence in his teen years.

2.  Never Too Soon for the Epi-Pen

I'm not a medical professional, and I'm not giving medical advice- I'm sharing what I have learned. The doctor in our emergency room clearly reinforced for us to use the epi-pen at the first signs of anaphylaxis, (even if you're wondering if this is the right time). Not to wait for additional signs. The last thing I want is to wish I had used it or used it earlier. The side effects of epinephrine are preferable to the alternative.

3. More Diligence Around Ingredients

Colten asked if the cookie had nuts, and the adult with him called the friend she bought them from, whose daughter was the baker. The answer was "no, no nuts" however the cookies had been mislabeled. It's making us rethink our family "rules" regarding ingredient questions; what kind of labels we trust, and/or how we communicate the repercussions of our allergy ingredient questions to those who are less familiar with food allergies.

4. Find a Teen Food Allergy Support Group

We've talked with Colten a lot about his allergies. However it seems more obvious to me now that he needs to talk with peers who have experienced this, and who understand from a first-hand perspective. We'll be looking into this in the coming month to see if something exists near us.

Here's to sharing learnings... onward, Allergy friends!

A Scary Day in the Life with Food Allergies

I'm passionate about food allergy awareness- I just had new awareness yesterday. Sharing this [very long] story in the hopes that it helps others as well.

I consider myself and my family extremely well-educated regarding food allergies. Even so- yesterday, Colten had an anaphylactic reaction; his first since he was 1yr old. He's ok now, but it was hands-down the scariest day of our lives.

On a Boy Scout hike with his patrol group, he walked across the Golden Gate Bridge. They all had a cookie to celebrate their success. Colten asked if it had nuts and was told no... it turns out we later confirmed there was walnut in the cookie. There are a number of things that went right and went wrong from this point on.

Colten called us and left a message to say he ate a cookie and his throat was itchy. We didn't hear the phone since we were at an event. Matt picked up the message a little later, called back- but no answer. He immediately started driving to the bridge and I headed to the hike meeting location.

Along the way, neither of us could reach him nor did we know exactly where he was along the hike. I was texting him "Colten are you ok/ Colten take your epi-pen/ Colten have a grown-up call 911." Still no reply. I tried another mom whose son was on the hike. No reply. I called 911 and started to let them know that my son might be having a reaction- and got a call from Matt that Colten was ok. I hung up with 911. A minute later, Matt called back- Colten had thrown up (second symptom, confirming anaphylaxis) and he'd instructed Colten to use his epi-pen. I called 911 again, staying on the phone (through the operator asking "what street is Golden Gate Bridge on?" Really?)

Arriving at the GGB Welcome Center, there were thousands of people- it was a sunny, 70 degree day in SF. Tourists everywhere. I'm screaming his name... I finally spotted them and ran over, with 911 arriving a few minutes later. In the ambulance, they set an IV, administered more meds, and monitored him. Seeing him stable, I finally took a deep breath. At the emergency room he had more steroids and fluids to prevent an allergic rebound (a second reaction that can occur when the epinephrine wears off). He was released a few hours later from the hospital- all is ok.

The most important thing about the day was that Colten carried his epi-pen. I can't stress that enough- it saved his life. Everyone (EMTs, ER staff) gave him huge props for carrying it on him- I was surprised (seems like a "given" to me) but apparently most anaphylactic patients in the ER either don't carry it on them, or had it but didn't use it. We were also very lucky that the adult with him helped to administer the epi-pen (he was too scared and unsure). Also, Colten called us when he first felt an itchy throat, giving us time to get to him and call 911. Lastly, when in the Presidio in San Francisco, I know to call 415-561-5656 from a cell phone for emergency services, not actually "911" unless from a landline (those calls go to CHP).

That said, there are some things we'll do differently moving forward. Colten called us once, but he didn't know to keep calling us until we picked up- he now knows that. Also, while he suspected it was a reaction, he didn't know that the "super itchy throat" was the beginning of anaphylaxis. He took some Benadryl- which is a step that gets mixed reviews- it slows the reaction but it can also mask anaphylaxis (making you think you're ok).

Also, we as parents have been very reliant on Colten now having a cell phone. And our tween/teen has been so independent and mature lately- we didn't get phone numbers of others on the hike. That's a mistake we won't make again. Knowing your child is in a life or death situation and not being able to reach him ("sorry I didn't pick up mom, but it was so loud on the bridge") is not a feeling I want to relive. In my mind I replayed allergy horror stories I've recently read, over and over.

In debriefing, Colten has also recognized another symptom he had at that time. He felt "worried" (which isn't an unusual feeling for him- but in this case, was likely a symptom- many say they feel "weird" or "like something bad is happening" during anaphylaxis).

He's fine now- happily granted screen time last night to rest and recover. He's headed to the Allergist today for a follow up appointment. We are lucky and blessed.

Non Compliance

2017 kicked off well, with a lot of hiking, yoga and personal training. In mid-February, though, I did a hard hike on Mount Tam and found myself unable to walk on my right foot a few days later. The suspect? A stress fracture in my cuboid bone (the outside of foot below ankle bone).

I started with a cast on my foot, but it bothered me to the point I ask them to take it off, and promised to wear a walking boot all the time. And I do, although i take it off to drive... and sometimes at home... 

In a walking boot, I resorted to the only fitness option remaining- swimming. It was a hard sell to my brain, but after 2 or 3 times I was back in love with a sport I haven't done since high school. It's been about two months now, and I'm still digging the swimming. It's also made me realize that WOW, DO I MISS WALKING! It's funny how when I was hiking, i missed running. Now that I only swim, i miss walking. 

My sister texted the other day to say she broke her ankle. The doctor asked if she'd really wear the brace since "she had a history of non-compliance." I looked down to see my bare foot and the boot on the floor....non-compliant must run in the family.

Bad Knee

There were three surgeries years ago- ACL, kneecap, and a cleanup procedure. Having made it through and still able to play soccer, I never looked back. Nearly 20 years passed- and running became a huge part of my life. 10Ks, half marathons, and then a marathon- I was hooked. Minor afflictions like sprained ankles and plantar fasciitis couldn't keep me down long.

That was, until this year. On a sunny day, the weird tightening and stiffness I'd been experiencing (and ignoring) for two years turned into a run that felt unstable... so unstable that I thought I'd re-torn the ACL.

"We'll get an x-ray," said the doctor. "Oh, I think I need an MRI," I said wisely. After all, it was my knee. "Well, I am pretty sure you have severe arthritis," says Doogie Houser. I brush it off- this guy has no idea what he's talking about.

Turns out he did- those surgeries mean I now "have the knee of a 75-year old" (just what any 40-something old wants to hear). This past half a year has been a journey of me learning how to be active when running is no longer on the menu. Swimming? Too wet. Indoor cycling? Too indoor. Walking and yoga seem to be the answer, for now.... though i still dream of running.

Opt Outside for a Digital Detox

Re-posted from my blog piece on www.ymcasf.org

Recently, my kids and I were hiking in the Marin Headlands, from the Point Bonita YMCA to the graffiti’d overlook atop the Point Bonita Lighthouse.  At the end, the narrow coastal path opens to a 270+ degree view of San Francisco.  Every time we see this, we stand there in awe.  And as someone who loves capturing moments, I took advantage of the great panoramic photo and asked the kids to smile.  My oldest balked:

“Mom, we're on a hike. Do you think you can put your phone away?”

Ouch. It’s hard to know when to document the moment and when to be in the moment, but you can count on your 12 year old to clarify this for you. My kids know I’m a stickler about technology having a time and a place, and they are more than happy to remind me when I’m not aligning with my own values.

This Friday is another opportunity for that digital detox: Opt Outside. After the food and family and friends—and instead of spending time indoors or online—consider joining the national movement to take time for personal wellness through connection to nature. We know that time outdoors has all kinds of health benefits like stronger bones, better eyesight, reduced risk of obesity and diabetes, longer attention span, increased creativity, and better relationship skills, to name a few—and the focus on “green time” instead of “screen time” might be just what we need.

We came up with a list of our favorite things to do when we Opt Outside—join us and post your photo (your one tech moment!) to celebrate with #OptOutside #DigitalDetox #HealthyLiving

Five Ways to #OptOutside with the Family This Friday

1. CHOOSE YOUR OWN ADVENTURE  

Sign the REI #OptOutside pledge to get outdoors and head to a state or national park or recreation area for the day.

2. THE HIKE DISGUISED AS SOMETHING ELSE

Sometimes it’s hard to motivate, and my suggestion of a hike can be met with groans if the kiddos are sleepy or lazy.  But suggest a scavenger hunt using a Polaroid camera, or bring a notebook to document your findings (bonus points for a waterproof notebook like “Rite in the Rain” and sharpies)… and suddenly this hike sounds like loads of fun. We’ve also spiced up our hikes with camp songs and the Yelling Game (someone says go and the players can yell for as long as they can run- great silly fun and a little extra lung workout!). For the artistic, use the hike as inspiration to sketch or doodle along the way. The Presidio’s Andy Goldsworthy installations are a great way to enjoy large scale nature art while hiking.

3. GET YOUR ZEN ON

Hike to a nearby labyrinth or make one! If you are in the Bay Area, our favorite is the Labyrinth at Land’s End in the Golden Gate National Recreation Area. Or find one near you! But you can also make your own anywhere out of rope, stones, sand or leaves (and if at a park or common space, just remember to leave the area as you found it when you’re done). Labyrinths have been used for hundreds of years for relaxation, meditation and for fun.

4. RALLY THE GROUP

Feeling like some good old-fashioned casual outdoor fun? Invite some friends (and friends of friends!) to a nearby park for a play date with Kickball, Capture the Flag, Ultimate Frisbee, and Sardines. (Sardines is our current favorite- it’s the opposite of Hide and Seek. The “It” player hides while the group members (seekers) close their eyes and count to 30.  Each seeker player then tries to find “It” and quietly join him or her in the hiding spot. Pretty soon everyone is packed in like sardines, and the last player to find “It” becomes the new “It.” Playing this game in the old military bunkers at Fort Barry was a huge hit with my 8 year-old son and his friends- you can park at the Point Bonita YMCA and walk southwest to Battery Mendell or northeast past the Rodeo Beach overlook to Battery O’Rourke for some great Sardine-quality bunkers.

5. EXERCISE YOUR RIGHTS

Challenge your family to experience a number of the activities on the San Francisco Children’s Outdoor Bill of Rights this Friday, or complete the entire list throughout the weekend. Next on our list for achieving #1 (“exploring wild places”) is the Wave Organ along the Marina Boat Harbor in San Francisco.  The Bill of Rights is also a great way to appreciate the nearby nature in your own neighborhood even if you only have an hour or two.

Like many, my family is making the commitment to get outside this Friday and I’ve promised the kids they’ll only have to suffer through one photo (or perhaps a few, depending upon their squirmy factor) to document the day. Have fun and be well outdoors!

Nearby Nature: Headlands Magic

Re-posted from my blog piece on www.ymcasf.org

One day last year, we were on our way to the Marin Headlands for a family treasure hunt program hosted by the Point Bonita Y.  From the back seat of the car I hear:

Kid #1: Wow this is pretty. Do they have electricity here? 
Kid #2: Hey, look- suburbs!?!?
Kid #1: Boy, this place is a long way from Safeway. 

My boys are city kids; that’s for certain.  But they’ve been raised by a trail running/hiking/former camp director of a mom, and a backpacker/camping enthusiast of a dad.  And they’ve quite literally grown up at a Y within a national park.  The Presidio is where they come after school, on weekends, and daily each summer.  And yet, the Marin Headlands, contiguous to the Presidio and part of the Golden Gate National Recreation Area, felt foreign and mysterious to them.  Like maybe there were no modern amenities or groceries available.

And then there was this other day of hiking in the headlands:

Oli: Mom, can we just stay here all day? 
Me: Sweetie, you have futsal practice today. [Futsal/indoor soccer is his favorite sport]
Oli: Ok, well then can we come right back after futsal? And when do we get to sleep over here?  I think there should be a “Kids Night Out” here.

My kids can’t get enough of the magic of nearby nature. The Marin Headlands are just 12 minutes’ drive from the Golden Gate Bridge, but it feels like worlds away.  The Point Bonita Y is launching a new Family Camp program here, and I can’t wait to see my kids and others experiencing the wonder of the national park.  Stay tuned!

~~~~~

Starting in November, Family Camp Weekends are available to the community and Y members as an extension of “Let’s Move! Outside,” a national initiative and collaboration of the YMCA and the National Park Service. Along with local partners the Golden Gate National Parks Conservancy and the Presidio Trust, the Y and NPS are providing hundreds of youth and families with meaningful opportunities to play, learn, serve and work in our national park.  No supplies needed- just bring yourself and your family and your sense of adventure.