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.