It’s Just Not Worth the Risk: Our Anaphylactic Experience
Last night was the worst night of my life. It was the night of my son’s first anaphylactic reaction.
Looking back now, it all seems like a nightmare – blurry, but terrifying all the same. I’ve been thinking about how I’d write this post throughout the day. How to begin, what details to include/avoid, etc. I’ve settled on brutal honesty and to start from the beginning, with a short history of my son, Tristan’s, allergies to date.
Allergies vs. Intolerances – conflicting tests results and history of reactions
In order to help identify triggers for my son’s severe eczema, we’ve had Tristan allergy tested twice for the standard top food allergies – once around 18 months and again just before he turned four-years-old (he’s 4.5 now). The first time, a skin test showed positive results for walnuts only and nothing at all in the blood test. The second time, a skin test showed positive results for hazelnuts only and nothing at all in the blood test.
Allergy testing didn’t shed any light on Tristan’s possible eczema triggers, but I kept hearing that it was likely food was still a trigger. Here is a great post from An Apple a Day Nutrition on this very topic. We embarked on an elimination diet, which you can read more about in detail here. Bottom line is we identified the following foods as irritants for his eczema and removed them from his diet – dairy, gluten, soy, corn, almonds, walnuts, hazelnuts, and pecans. All of this was done alone (which I do not personally recommend), without the help of an allergist or a nutritionist. We had met with multiple allergists in the past and none of them recommended follow-up appointments due to the negative test results we’d seen. So, we’d never had an allergist really follow our journey. In fact, I had to ask my son’s primary care physician for an epinephrine auto injector prescription as one had never been recommended for Tristan. (We initially used EpiPen, but have since switched to Allerject/Auvi-Q as it’s so simple for anyone to use.) I figured it was safer to have one, just in case. This is because once the offending foods had been eliminated from my son’s diet, when reintroduced six months later, some foods seem to cause more than just an eczema flare-up. Consuming dairy and gluten could induce coughing and asthma, which at the time was easily controlled with a dose of Ventolin. But still, having an auto injector just gave me peace of mind.
Basically, I never had a confirmation on if my son had true food allergies. In my mind they were allergies, based on FARE’s symptoms guidelines, but I wasn’t 100% sure and was always second guessing his reactions, thinking maybe they were sensitivities or intolerances instead. It’s because of my doubt, and the fact my son has never been under an allergist’s care, that my husband and I occasionally would conduct food challenges at home. So often children outgrow their allergies, and since I wasn’t even sure my son had a true allergy, I believed that my son would grow out of his food issues – I wanted him to out grow them with all my heart – wasn’t wanting that and believing that with all my heart enough to make it true?
So, what happened and where did it all go wrong?
A risk not worth taking – EVER again.
It had been a while since we’d let my son have cheese because dairy aggravated his eczema. My husband and I had been discussing another round of at home food challenges to see if all his eczema triggering foods still affected him the same way. So, I gave him one tiny bite of sheep’s milk feta cheese four days ago. He had absolutely no reaction what so ever. AWESOME! Allergy free days – here we come! That’s the idea my husband and I had in our heads. I had some of the same feta left over when I made pizza for dinner, so I threw a few small pieces on my son’s normally cheese-free pizza. I gave it to Tristan and told him that it was the same cheese he’d had a few days before, so it was safe, and wasn’t it exciting to be eating pizza with real cheese?! He didn’t react with the excitement I was expecting, but I didn’t think much of it. He ate his pizza, but had picked off most the cheese. When I asked him about it he said it was “icky.” Hm. He used to love cheese. Secretly I was thrilled as dairy isn’t something I believe in consuming on a regular basis, but I didn’t read to much into his picking off the cheese. Later I asked him about the cheese and he said “I was afraid it would give me eczema or allergies.” Oh, poor guy, he knew something wasn’t right.
Fast forward 10 minutes.
He started coughing excessively and his face had gone red. He’d had a small virus all week, and coughing fits similar to this had been occurring on and off for the past week, so it wasn’t alarming at first. It’s when the fit continued for a couple of minutes that I took notice, as did my husband. I asked Tristan if he was alright, but he wouldn’t really respond. He started to look really uncomfortable in his body – a sign that his breathing was in trouble.
Red Flag #1 – I grabbed his Ventolin and gave him a couple of puffs, which did absolutely nothing. Ventolin ALWAYS provides him with relief.
Red Flag #2 – He asked to lay down.
I gave him the maximum dose of his Hydroxyzine (antihistimine) and continued to monitor him – never leaving his side. My husband and I were exchanging nervous glances. I grabbed the epinephrine auto injector and started to mentally prepare myself for what I may have to do.
Red Flag #3 – Tristan’s lips start to turn blue.
My husband calls 911 without batting an eye. I couldn’t believe this was happening.
Red Flags #4-7 Tristan wouldn’t respond to our questions, his face had swollen up so that his eyes were small slits, his body was covered in hives, he was itching madly.
The 911 dispatcher couldn’t tell me to administer the epinephrine, but she said if I had it and felt I should use it, to go ahead and she would walk me through the steps. I admit to tuning her out as I knew exactly what to do, although I was so nervous. (Thank you to all the lovely food allergy mom’s I’m connected with online who’s experience gave me courage in that moment.) I plunged the injector deep into my son’s thigh and he screamed out. I could tell he was less than thrilled that I held the needle in his leg for a long 10 seconds, but given his current state, it was the least of his worries. I removed it and was surprised to see so much blood – a little trail down his leg. Within a few seconds his lips which had become purple, lightened up a bit, but were still definitely blue. All of the other symptoms remained the same.
Less than one minute after administering the epinephrine and maybe three minutes after calling 911, the fire men arrived and quickly assessed our situation and helped us prepare for the paramedics to arrive. Maybe two minutes later the parametics arrived and started hooking Tristan up to their machines and took his vitals. They were wonderful and took charge and were just perfect with Tristan. They immediately got him started on a nebulizer alternating with Ventolin and oxygen. Then they loaded Tristan up in the ambulance and I joined him on the ride to the children’s hospital.
During the ride the paramedic said Tristan wasn’t responding enough to the first dose of epinephrine, so he gave him another dose and continued with the Ventolin and oxygen breathing treatments. He started to look a little better and the itching had stopped, most likely due to the antihistimes. Once we arrived at the hospital, his swelling had gone down quite a bit, but his hives and wheezing remained, so he continued with breathing treatments. It was around one hour after the attack started, that he finally was back to normal. Since he had two doses of epinephrine, they kept him for observation for six hours.
The doctors were really great. One even commented how great it was that I wasn’t afraid to use the auto injector. The other one was a resident and asked for a full recap of the night’s events. She seemed surprised that Tristan wasn’t being followed by an allergist, when I then jumped in to tell her that he tested negative to dairy allergy. She was surprised, especially when I confirmed it was her hospital that did the testing. Yes, a reaction to dairy like that with a negative blood test result. Imagine!
Finding the good in such a horrifying event
There are a few positive things that have come out of Tristan’s anaphylactic episode.
1) A pediatric allergist from the children’s hospital will now gladly take Tristan on as a new patient right away. The average wait time to get a new appointment with their clinic is three years. I look forward to working with the allergist in trying to understand Tristan’s allergies – why he tests negative and why he can eat an offending food one time and be fine, then have a reaction the next time – if we wait several months the cycle starts over again – he can eat the food once in a small amount, but not the next time.
2) My husband and I have learned that it is absolutely not safe to do food testing/challenges at home, no matter how minor past food reactions have been. I am thankful to turn to the allergist for help with this going forward as I still have hope that Tristan will one day outgrow his allergies.
3) I have conquered my fear of an epinephrine injector and I realize my husband and I are both great under pressure and work well as a team.
4) (This may sound horrible) Tristan has seen what can happen if he eats something he is allergic too. It’s a horrible lesson, one I would not have chosen for him, but hopefully this memory will last forever and he’ll never be careless about his allergies.
Please share this story with anyone who may have a child with food allergies, sensitivities, or intolerances – or may have them themselves. Allergy testing is not the be all end all – there are false negatives, just as there are false positives. A reaction to food may start out as relatively harmless (itchy skin, eczema) and can one day, without warning turn into anaphylaxis. Just please be careful and do not take the unnecessary risks of conducting food challenges at home and without a physicians supervision.
UPDATE 2/18/2013 – Please read the follow-up post, After an Anaphylactic Reaction – Road to Recovery.
For further stories on eczema and food allergies, check out: