So a few weeks back, I had my six-year-old daughter, Julia, tested for food allergies. She's always had a bit of a weak stomach, and I'd noticed it was worse when she had chocolate, but then she'd drink chocolate almond milk every day (a switch we made after she showed herself to be a bit lactose intolerant) with no problem. So I just wasn't sure: Is this a dairy issue? But she eats cheese just fine. Is it a chocolate issue? But her granola bars have little chocolate chips and she's never had a problem. Is it some additive or processed ingredient? What about those completely-devoid-of-redeeming-value orange fishy crackers and Cheeze-Its that always make her vomit yet which she continues to eat when I'm not around to remind her not to? Is it the "cheeze"? I couldn't quite put my finger on it, so in we went for the blood work.
Let's skip over that part, because if you have a kid and have experienced a blood draw, you know that it really, truly is more painful for the parent than the child 90% of the time. So we did that.
A few days later, the pediatrician's nurse called, and with a rather surprised tone, told me that Julia is allergic to cacao. Not cocoa. Cacao. My response was something like, "Ummm... ok. What exactly IS cacao?" I knew it had to do with chocolate, but other than that, I was a little confused. How could a person be allergic to the raw ingredient (cacao) but not the processed result (cocoa)?
After requesting a copy of the test results so I could better understand the severity of Julia’s allergy, I consulted Dr. Google, who had very little to say on the matter. All I found out was that cacao allergies are extremely uncommon, as are cocoa allergies. People who consider themselves allergic to chocolate are actually more likely allergic to a particular ingredient in processed chocolate other than cocoa or cacao. So that was completely not helpful.
Next, I reached out to allergy advocate and Lauren's Hope friend, Elizabeth Goldenberg of Onespot Allergy Blog. Elizabeth, I was sure, would know at least 20 people whose kids have cacao allergies and who could tell me how they manage their kids’ bizarre allergies. To my surprise, though, Elizabeth and her extensive network had little experience with this specific allergy. Leave it to my kid to have the allergy that even an allergy advocate has never encountered! Even without experience with cacao allergies, however, Elizabeth and her terrific Facebook community had lots of great ideas and tips on managing a food allergy.
Looking for expert allergy advice? Elizabeth shares her top tips for parents of kids with allergies below!
Fortunately, I’m not unfamiliar with being in this position of being a parent advocate and ersatz dietician. My son, Will, as I’ve shared here on the Lauren’s Hope blog, has severe autism. Having him on the gluten-, casein-, and soy-free diet has made a huge difference for him, as he is highly reactive to these substances. However, he’s not allergic. He’s intolerant. So yes, with my son, we will see massive behavioral issues and digestive problems that can last weeks after exposure, and that is a very big deal, but his actual life isn’t at stake. For Julia, we’re talking about something completely different.
With this mindset, I requested EpiPens from the pediatrician, who was quite reluctant to prescribe them for a “moderate” allergy but did so at my insistence. I reported this to Elizabeth at Onespot, who was very pleased I’d gotten the autoinjectors, informing me that the idea that an allergy is mild as opposed to moderate, severe, or serious is extremely outdated, as someone who has had moderate reactions time and again can very easily have a significant allergic reaction upon re-exposure.
So, now what?
The next steps were pretty simple. I bought Julia a shiny new Lauren’s Hope medical ID plaque to go with her many fun bracelet strands. That's Julia (left) wearing her Purple Lipgloss Medical Alert bracelet. She has always worn a bracelet as an ICE ID, so there was no hubbub about that one. I talked to the school, and we’re developing a 504 for Julia just in case. And then of course, there are forms to fill out so the nurse can keep and administer Benadryl and/or an EpiPen if it’s ever necessary. Aside from that, I’m carrying an EpiPen in my purse, and I’ve updated my wallet cards to include Julia’s new allergen information.
Julia is quickly becoming a good advocate for herself, even at 6, asking what has chocolate in it and trying lots of new things as we have cut all chocolate out of her diet (vanilla frozen yogurt is the new fave!). No more chocolate almond milk. No more granola bars with teeny chocolate chips. No more chocolate, period. And you know what? In just a week, I saw a huge difference in her digestion and appetite, and she hasn’t thrown up once. Cacao. Who’da thunk?
Elizabeth’s (very wise) Words of Wisdom for Allergy Parents
As the co-creator of an online anaphylaxis first aid course and the author of Onespot Allergy Blog, as students head back to school and parents are meeting with their children's teachers, I've been getting a lot of questions about access to epinephrine and the best emergency protocol to follow for students at risk of anaphylaxis.
My advice is that allergic students should be wearing at least two doses of epinephrine (either an EpiPen or Auvi-Q injectors) in a belt or carrying case. This ensures that medication is always within reach, so that in the event of an allergic reaction, people are running to your child to assist him or her, rather than running away from your child to obtain his or her medication. Students should also be wearing a medical id bracelet with information such as this:FIRST & LAST NAME
NEEDS EPIPEN FIRST
CALL 911 NEXT
Unfortunately, many people with known allergies don't wear their medication, and 25% of epinephrine injections at school are for students or teachers with no known allergies. For this reason, epinephrine is often kept at school in a cabinet or case. I'm often asked where these Epi-Kits should be located.
Epinephrine Kits should be kept no more than 60 seconds away, making a 2 minute round trip. We captured this advice in this image from our anaphylaxis first aid course at epipentraining.com:
I'm also often asked by parents, school nurses, and teachers to share the emergency protocol we recommend in our training course. Here are the 7 steps to follow if you're present during an allergic reaction. In summary:
Of course, you have to learn all the symptoms to watch for to recognize a reaction, when to inject epinephrine, where to inject it and how to position the patient for the best uptake, and how to monitor the patient medically until help arrives including when to re-inject. This is the curriculum of our first aid course, which is the care to be given in the precious minutes from the start of the reaction until the patient arrives at the emergency room, care which saves lives. Have a safe, happy, and healthy school year everyone!