Food Allergies and Reactions: Our Story (Part 3)

This is part three of our eczema and allergies story-- catch up on Part 1 here and Part 2 here.

This is the story of C's first anaphylactic reaction to a food, and our journey with food allergies since then.

As you remember from reading parts one and two of this story, we had gradually been discovering food sensitivities beyond external allergies and causes of C's eczema.  She had been seeing an allergist for several years, and we had performed both scratch tests and blood tests.  The only food that had ever tested positive on any of these tests was milk protein/dairy (on a blood test).  At her allergist appointment a few months before her big reaction we did a scratch test and she showed positive for fish and shellfish.  She had never tested positive for these foods on any other test, and she had even ingested them on a few occasions without a reaction.  However, her allergist suggested we carry an epi-pen just in case, since shellfish especially can cause "a pretty nasty reaction" (allergist's words at the time).  So he prescribed the epi and we filled it and had it in the house, not really expecting that we would ever need to use it.

Fast forward to September 30, 2018 (my birthday!).  We were doing our usual Sunday morning chores-- laundry sorting, and the kids were taking turns in the bath.  I was doing some food prep for school lunches.  The girls had only just started school a few weeks earlier in the district where M teaches.  We were all still adjusting to the rigor of the daily school schedule plus 45-minute commute each way, and we really reserved weekends for resting at that point in time.  I was adjusting to packing four lunches on a daily basis and trying to fit that into my already busy schedule!  Preparing lunch foods on the weekends has always been a good way for me to save time during the week, and that had been especially true since starting school this year.

It was just before lunch time (around 11:30/12:00).  I had decided to make a vegan nutella that I could use on tortillas with bananas and other fruit.  I was certain the kids would love it!  I had been unable to find hazelnuts when shopping, and so, knowing that I had some pine nuts leftover from a pesto I had made a few weeks earlier (WHICH C HAD EATEN) I bought more pine nuts and figured I would roast them and sub them for the hazelnuts in the nutella recipe.

C was just getting out of the bath and saw me finishing up making the nutella in the food processor.  She was eager to try some (who wouldn't be?? it looked and smelled delicious!).  I spread some of the finished nutella on a wheat tortilla, topped it with banana, cut it up, and gave her a plateful.  She quickly ate about half of what was on her plate.

I was busy doing something else (can't remember what) and I had left the room, so I don't remember exactly how much time passed, but it was certainly not more that 5 minutes.  C suddenly approached me with sort of a stricken look, and said, "Mama my mouth feels funny!"

I was about to brush it off, the way you do when your child tells you their tummy hurts or they stubbed their toe or something else not-so-serious.  But when I saw the look on her face, and could see that her mouth and lips already looked slightly swollen, I knew I should take a closer look.

I should stop at this point and say that I wasn't really familiar with anaphylaxis at that point in time.  I knew it was a thing that existed, and I had a vague idea of the symptoms, but didn't know anything about the progression or signs to watch for.  If you have never seen this type of reaction first-hand, or don't have experience with severe allergy, or haven't taken a first aid course, you would have no reason to know or understand.  I had seen C get sneezy and have swollen and red eyes, and even occasionally hives, around cats or dogs, so it was slightly on my radar, but had never turned into anything severe before.  I just didn't have a reference for how a life-threatening reaction would play out in real life.  It wasn't until I did more reading on it later that I fully comprehended what happened to my daughter before my very eyes.

So.  Back to the story.  I took out my phone and used my flashlight to look inside her mouth.  Her cheeks and lips were swollen, but her tongue seemed fine.  Her throat was open.  Her nose was starting to run.  I suspected an allergic reaction, but I wasn't sure.  I calmly told her she was probably having "allergies".  I went to get some Benadryl, figuring even if it wasn't a reaction, it wouldn't hurt her to have it.  She was still dressed only in her bathrobe, having only just gotten out of the tub twenty minutes before.

I gave her the Benadryl and she swallowed it.  I was helping her onto my bed to just be still for a minute, and suddenly she began to projectile vomit.  The entire contents of her stomach were on my bedroom floor within about 20 seconds.  It was pretty amazing, actually, that such a small person was capable of such a thing.

Again, trying to stay calm, all I said was, "Wow, your body is doing just what it needs to do to get rid of that food!" and I continued helping her onto the bed.  M heard what was happening and swooped in quickly to do the cleanup.

I feel like I moved in slow motion from this point of the story on-- I was figuring things out as they unfolded.  It's very strange and hard to describe it-- her reaction and my reaction to her reaction seemed to happen very slowly and very quickly at the same time.  My logical brain was keeping me calm, and I didn't want to overreact, but I also know my child, and my Mama instinct was telling me something was very wrong, so I was simultaneously trying to suppress a huge amount of panic.

I don't remember for sure, but I think it was within about 5-10 minutes of the vomiting that the hives started.  All over her arms and legs, and they were obviously incredibly itchy because she couldn't leave them alone, despite us telling her repeatedly not to scratch.  She went into sort of a frenzy of itching.  Her eyes were also very watery and itchy and the hives on her cheeks and her neck were causing her whole face to swell.  It was around that time that I decided to call her allergist and ask what to do.  It was the weekend and I wasn't even sure if the allergist office had an answering service, but I knew we needed to try.

There was indeed an answering service, and C's doctor happened to be on call that weekend.  He called us back within about two minutes, and as soon as he heard that she had vomited and her face was swelling, he said "You need to give her the epi-pen and call 911."

As I was hanging up, I turned to M, and that's when the tears started.  I left the room so I could hide my momentary panic.  M followed and asked me to talk through it-- I think we had given C the iPad to take her mind off things.

All I could manage to tell M at that point was that I was afraid of using the epi.  This was true; I didn't want to hurt her, I had never done it before, and I was certain that she would be terrified at the idea, even more so than she already was.  But I think the tears started for me at that moment because, as soon as the doctor told me to use the epi, my suspicion that this was a life-threatening situation became a certainty. I took only a few seconds to swallow my fear, calm myself down, and move forward, because I knew we didn't have time for much discussion.

M volunteered to give her the epi since he had had first aid training on it recently.  In my mind's eye, he was moving slowly about it... I think at this point he was still not convinced that things were serious enough to warrant it, and of course we wouldn't want to put her through that unless we knew for sure it was needed.  Her breathing was still fine and she seemed otherwise okay other than the hives, itching and swelling.

However, I *was* certain, and impatient with the delay, and so I found the epi in the closet, handed it to M and told him I would call 911 while he was giving it to her.  I headed to our landline phone in the kitchen and made the call.

The 911 operator first took our address and information, and was still asking questions about C's symptoms when I heard the ambulance pull up in front of our house.  The paramedics sort of burst in before I was even off the phone (this was very scary for little J!) and I greeted them and went to the bedroom for C, picking her up and carrying her to the living room.  M hadn't had a chance to give her the epi yet.

She was of course terrified of the paramedics and as they started looking her over she began to cry.  They asked if we had used the epi yet and I said no.  They asked who would ride with her in the ambulance, and after a quick glance at M, who nodded, I replied that I would.  C started shaking her head and saying "No, no, I don't want to go in an ambulance."  She was crying very hard and quite scared.

One of the paramedics knelt down and began speaking to her very gently.  I don't remember what he said, but he somehow got her to start calming down and convinced her to take the ride.  I picked her up again and we started to walk outside-- but then I remembered she still only had on underwear under her robe, so I asked L to quickly grab some clothes for her that we could take.  She did and we left quickly.  N and L understood what was happening but this was all pretty upsetting for little J and she didn't want to see us go.  I could tell J was watching us out the window as they put C on the stretcher and got her all strapped in.

The ambulance ride was oddly quiet.  They were taking C's vitals the whole way, deciding whether or not to administer epinephrine in the ambulance or wait until we arrived at the hospital.  I just sat by her and kept telling her how brave she was.  One of the paramedics was chatting with her about the book she was making on our iPad Book Creator app.  As we were rounding the corner to the hospital I thought I could hear a bit of a wheeze in her breathing.  By the time they had gotten a good read on all her vitals we had arrived at the hospital (we were only five miles away, thank goodness!) so they just whisked her right in and before I knew it, the doctor on duty was coming in to check her.

As an aside, I had noticed both in the ambulance and when we arrived that they did a blood pressure reading and it was quite high.  I'm not sure if that was a part of the reaction or just her being nervous, but I remember that detail.

It only took the doctor a minute of examining her to say, "This is definitely a systemic reaction and I would strongly recommend we give her the epinephrine."  I immediately agreed and within about a minute a nurse arrived with the syringe.  C was still playing a game and gave a small squeak when they gave her the shot in her leg, but other than that she barely noticed (thank goodness for that iPad!).

It was just after 1 PM at that point, only about an hour since her reaction first started, but it felt like an eternity.

It was at that moment that I sat down for the first time and started to relax a little bit.  I had been so impatient and holding my panic at bay, and it was just such a wonderful feeling that she finally was getting the medicine she needed into her system.

A few minutes later the nurse came in again to give her an IV through which they gave her saline, some sort of super-strength Benadryl, and a steroid (this gave me a momentary twitch after our previous experience with steroids, but I didn't really have the energy to argue at that point).  She wasn't using the iPad when they gave her the IV, but she still barely made a peep about it, which is extremely unlike C.  She is normally quite afraid of needles.  I think at this point she was either in shock and just not herself, or she was so ready to be feeling better that she was willing to go through anything to get there.

After she had all of her medications going the nurses left, and we both just sat there in silence for a few minutes.  I told C a few more times how brave she had been.  I was very grateful to be in a safe place with her, and that all the paramedics, doctors and nurses had been so kind and professional.

We stayed in our little room for about three hours after that, and the nurses were checking her vitals and everything periodically.  They didn't really give me much information at the time, but I later learned that they needed to keep us for a while to monitor her for any secondary reaction, or possible reaction to the epinephrine.  Looking back at my message history that day, I can see that during those three hours I was texting babysitters for my busy week of teaching that was about to begin, texting the organist at my church to let him know it was likely I wouldn't make it to sing the mass that evening, texting M details about J's first dance class the following day... the life of a Mama rarely slows down!

I think it was about 5:30 PM that they prepared us for discharge.  They wrote C a prescription for the three different drugs she had been receiving intravenously at the hospital, which we would slowly wean her off in the next three days.  We were given orders to see her allergist as soon as we could.  The doctor also warned us that the epinephrine would wear off at the six-hour mark, and we needed to watch her closely at that point for any re-flare of the reaction.

I called M and we waited in the waiting room for him to drive to the hospital and get us.  C was just laying on my shoulder, very quiet (which is not unlike her) and very slow to respond to anything I asked her.  She was obviously feeling the drugs and just completely worn out from the whole ordeal.  When we got in the car, the other girls (especially J) were all so excited to see her doing better, and they peppered her with questions, but she remained mostly quiet and restful.  I reassured the other girls as best I could.

We got home and she was able to eat dinner (I think we had dairy-free mac and cheese?) although I was completely terrified to feed her anything, truth be told.  She was able to get the calories she needed, however, with no sign of adverse reaction.

She was exhausted and asking to go to bed, so I allowed her to fall asleep in her own room.  As soon as we had put the other girls to bed, however, M and I both felt uncomfortable not being near enough to hear her breathing, so I gently lifted her out of bed and put her right between us as we were getting into our own bed.  The six-hour mark passed, the epinephrine wore off, and her breathing remained steady and we didn't notice any additional swelling or itching.  M and I fell asleep in relief, but I had one ear open all night, listening and watching.  She was still slightly swollen and would remain so for about the next 24 hours.

The next day, I kept her home from school and called her allergist first thing in the morning.  They were able to get us in early in the morning.  M had taken N and L to school, so C, J, and I made the trip to the allergist all together.

Her allergist remembered having talked to me on the phone the previous day and so we chatted further about how everything had resolved.  He cautioned me not to hesitate using the epi, if there ever was a next time.  I know that I never will again!  Of course since her reaction I have done lots and lots of reading about everything, and the scariest stories are about children who seemed fine one moment, were obviously not fine the next moment, and were given multiple shots of epinephrine and still died.  There is no harm in having epinephrine even if the reaction is not serious, but there is much harm that can come from waiting too long to administer it.  Another thing that I learned that day is that anaphylaxis can still be fatal even if the airway is not compromised.  We spent all of that time watching her breathing, but the truth is that, at any time during a systemic reaction, a person can slip into a coma simply from the shock.  Many people assume that it's always breathing trouble that causes the emergency, and so they think that without wheezing or swelling of the throat, it's not a severe reaction, but that's not always the case.  All the more reason to err on the side of caution and always epi first, ask questions later.

Her allergist suggested we have a full allergy test run that day, which would have to be bloodwork since she was still on super-strength Benadryl and that would compromise the results of a scratch test.  He questioned me about the exact meal she had had before reacting, so he could make sure that every single ingested element would be tested.

C was obviously still exhausted and traumatized, and she didn't have the iPad as a distraction, so our encounter with the needle this time did not go quite so smoothly.  The lab technician and I had to pin her down to get the blood drawn because she worked herself into a huge panic.  Once the needle was in, however, she calmed down, and they were able to get what they needed.  Little J was pretty traumatized by watching the whole thing, too.  We got a donut treat afterwards as a reward for her bravery, although I was still feeling really scared and watching every single bite she put in her mouth.  It was tough in this period of time between the testing and the results, when we weren't sure what had actually caused her to react, and of course I felt a lot of guilt over feeding her this food that caused such havoc in her body.

The results came back a few weeks later, and I talked to her allergist over the phone to go over everything.  Her highest positive result was to pine nuts, but she had also tested slightly positive to other tree nuts (except cashews and pecans), peanuts, and other foods as well-- wheat, dairy, sesame... and she was still highly positive to fish and some shellfish.  Because this reaction had happened with a food she had never tested positive to before, and had even ingested before without issue, her allergist recommended that we avoid any food that had showed positive on the test, even if it was only a slight positive.  (As I said before in the previous post, there are different "classes" of allergy based on blood test results, ranked from 1 to 6, 6 being the most allergic and 1 being the least.  C's allergy to wheat, for example, is a 2, and her allergy to pine nuts is a 4.  That's what I mean when I say more positive or less positive.)

And so, for the last 2.5 years since the reaction, we have avoided ALL of these foods.  It was certainly an adjustment at first, and I had to learn to cook all over again.  C was pretty sad about it for about a month when we started the new diet, but she really has rallied quite well and has been so resilient.  Now she is her own best protector-- she is well aware of the foods she can't have, knows how to check labels, and is just super mature about everything, for an 8-year-old.  She still has her moments of sadness from time to time, but that's to be expected and I don't blame her at all.  It happens most often at birthday parties where there is a particularly tasty-looking cake or pizza.  I am constantly trying to prepare and bring safe foods with us to every event, but it inevitably happens that we end up someplace unexpected without a safe food.  So it can be tough, but with a lot of practice we have learned to manage pretty well.  We are very fortunate to live in an era when food allergy awareness is at its highest, and there are thousands of options, even at the average supermarket and not just specialty stores, that are allergy-friendly.

So, the question we always get asked is... what happens now?

Will she outgrow these allergies?  Will she undergo more testing?  What's the game plan from here to the rest of her life?

Sadly, the answer to these questions is really unknown.  The more I read about allergy science, the more I realize it's really a lot of guesswork.  Allergy testing, both scratch tests and blood tests, can have variable results, and false positives and negatives are common.  Some allergists will tell you that the only true "positive" result is to have a life-threatening reaction to something.  Those same allergists would say that any food you can successfully ingest without anaphylaxis is not a true allergy.  I have even read the writings of some allergists who say avoiding foods unnecessarily can cause you to be more sensitive to those foods and increase the likelihood of developing a more severe allergy.

But then what do you do with a situation like C's, where she developed a life-threatening allergy to a food she had ingested before and never reacted to?  Some of the foods that she tested less positive to on her test I do let her "cheat" on occasionally, when we are in a situation where there's absolutely no other option besides going hungry.  Wheat is the one we have "cheated" on the most, because it is a less severe "class" than the others, and because it is SO prevalent on every menu everywhere.  But at a certain point, how do you live with the fact that at any moment, any of these less severe allergies could become more severe, in the same way that her nut allergy did?

I will say that since giving up all of these foods, her eczema has been drastically reduced, and her seasonal and environmental allergy symptoms have been much less severe.  (She also had a HUGE growth spurt in the first year of the new diet... she went up two clothing sizes and three shoe sizes!  So she's not going hungry!)  I don't know if she is just getting bigger and stronger and outgrowing things like eczema, or if it's related to her diet.  My gut tells me that these allergenic foods that she showed positive to on the test were all wearing down her body somehow, even if it was in a small way.  But it's so hard to know for sure.

It's on my list to visit her allergist again and get his opinion to see if more testing would help at this point, whether we need to keep avoiding foods, and what the future holds for her.  I'll keep you updated with any news we hear.

For now, she is brave, she is strong, she is energetic and healthy... and ready to take on life's next adventure.

And we are so very thankful.