Search This Blog

Friday, May 15, 2015

Our Anaphylaxis Story

Just retelling this story brings back all the anxiety of that night in late October of 2014, but this week is Food Allergy Awareness week, and I'm going to share our story.

When my son, O, was 14 months old, he was rushed to the ER by ambulance due to a severe allergic reaction. O was at my parents' house (like he is normally when The Husband and I are at work) and had just woke from his nap a little after 5 pm.  About an hour and a half later, The Husband was getting ready to head back home with O when my mom noticed some hives forming on O's neck. 

They quickly put him in the kitchen sink to rinse off whatever might be causing the flare-up, assuming it was a contact rash since he had not eaten anything since waking up from his nap.  The Husband gave him 2 mL of his Hydroxyzine which was an antihistamine O's dermatologist had prescribed for itching related to his eczema. 

Unfortunately, the hives continued to spread rapidly and The Husband decided to try and get O home as quickly as possible. About five minutes later, they arrived where I was getting dinner ready.  Upon seeing O's bright red, puffy face, we thought we'd try and putting him in a cold bath, suspecting that he must have touched something that was irritating his skin.  I told The Husband to call the pediatrician after-hours line to see what we needed to do.  In the bath, his condition continued to worsen and at this point, his whole body was covered in dark red hives that sort of got bigger and bigger until they globed together into large red blobs. His eyelids were swelling like a boxer who was losing a boxing match, his ears were getting bigger and redder by the second, and his eyes and nose had started to drip like a faucet. 

I remembered reading in one of my baby food cook books or blogs that severe food allergies and anaphylaxis could strike at any time to any food and could become serious for infants.  Suspecting that we may have been headed in that direction, I called 911 while The Husband got O dressed.  

We live next door to the fire department, so thankfully it was only a minute or two before the fire truck, ambulance and police car were at our front door, but in those two minutes, I tried to convince myself that they would show up, look at O and tell us we were overreacting first-time parents, give him a little Benadryl and be on their way. A team of four firefighters/paramedics came to our front door and upon seeing O's condition, decided he needed to get to the ER immediately.  Within a minute of them arriving at our home, we were told to take nothing and hurry down to the ambulance. Luckily my purse was right next to the door, so I was able to grab it and have my phone to get in touch with family for updates.

It was my first (and hopefully last) ride in an ambulance.  Lights flashing and sirens blaring, I was strapped onto the stretcher with O clinging to my chest while The Husband followed in his car (the pediatrician called him back while he was in the car and told him to call 911 - which he basically said, we're already way ahead of you!)  In the ambulance, they monitored his vitals and gave O two injections of antihistamine in his thighs which seemed to start helping immediately. I could hear one of the paramedics on the phone to the hospital requesting dosage or approval for epinephrine dosage for a 20lb one-year-old.  We arrived at the hospital before the hospital was able to relay the dosage info, and it looked to me like O was starting to improve and the paramedics said that his lungs were sounding clear.  

We were rolled into a room at the ER where it seemed like a million nurses came in to poke and prod O, tape things to his body, and take uncomfortable temperatures on a screaming, confused, itchy baby.  They gave him a steroid injection and an oral dose of another antihistamine. 

All the medications they had administered slowed the reaction enough for the ER Doctor to leave us alone for a bit.  We were told we'd be in the room for four hours with O hooked up to blood pressure and heart rate machines, waiting and watching (I later learned this was because allergic reactions can often have a two-fold attack, with the initial attack seeming to subside only to have a second severe attack within a few hours.) 

My mom, brother & sister-in-law came to give us some moral support, and brought us some things from home (phone chargers, socks, a clean shirt, checked our house to make sure I remembered to turn the stove off with all the food still in pots, etc - remember, we were rushed out of the house?  It was 7pm, after work when we were shoved into that ambulance... we were both a mess) and helped to take turns holding O while he was in misery.

After a very stressful hour at the ER, O finally fell asleep on my mom's shoulder.  The ER doctor told us we'd have to see an allergist within the week once we were discharged.  It was really only at this point that I thought to take pictures since I had no idea how I would describe all this to a doctor.  We have no pictures of his pre-treatment condition, but we have photos of him about an hour after all those injections, and while he still looked awful, he looked about 500x better than he did before we called 911. 

Falling asleep on his Amma's shoulder
after an hour of treatment at the ER
This is after an hour of treatment at the ER.
His hives, redness, and swelling had gone down significantly
I hopped on my phone to research and see if I could figure out what was going on.  The doctors and nurses moved so quickly, and I wasn't sure what was happening to my kid and what I needed to do to keep him safe.  As I began reading about allergies, I realized that while I had heard the term anaphylaxis, I had no idea what it meant.  In my phone reading, I learned that anaphylaxis actually refers to a rapidly developing and serious allergic reaction that affects a number of different body systems at one time. My kid didn't pass out or gag like they do on TV, but his breathing, skin, and circulatory systems had been simultaneously affected by an allergen.  I began to realize how lucky we were that O didn't go into shock from his exposure. I cried.

After those 4 hours, with O's blood pressure and heart rate comfortably normalized, they were ready to send us home. We were told to keep vigilant for a subsequent reaction throughout the night, and that we had to get our prescriptions filled before going home in case we needed to use the epi-pen for any reason. By this time it was a little after midnight, and finding an open Pharmacy was a little bit of a challenge for our exhausted crew. They discharged us with prescriptions for Benadryl (an H1-Blocker antihistamine), a liquid steroid, liquid Pepcid (which, if you didn't know, is an H2-Blocker - an antihistamine that in this case is used to help with the digestive end of an allergic reaction... and which took the pharmacist about 30 minutes to prepare) all of which he had to take for 7 days straight.  We were also sent home with a prescription for multiple epinephrine auto injectors which we had to learn to use that night.  

Back at home, my mom volunteered to stay the night and take turns with me watching O while he slept.  In the morning, his swelling had mostly gone down, but his ears were bruised from how large they had swollen.  
His ear the morning after.
That bruised red area up top went away
after about a week.
This was when the panic set in.  We still had no idea what had caused this, so in our minds EVERYTHING was a trigger.  EVERYTHING was a potentially fatal substance.  We didn't want to leave the house, we were scared of feeding him foods, we were terrified.

We made an appointment to see an allergist at the earliest appointment available, and were in their office by the end of the week.  In preparation, we retraced every step, took inventory of every possible substance O could have come in contact with, and made a journal of it all.  Nothing stood out.  It was misery.  The steroids made O vomit on occasion - or so the pediatrician told us that was the reasoning.  Later the allergist suggested that perhaps the vomiting was because O had a virus which either exacerbated another allergy to the point of anaphylaxis, or it was also possible that he had an anaphylactic reaction to the virus itself (WTF) even if O wasn't showing any other cold symptoms in the days leading up to this.  It was all a guessing game.

48 hours after being in the hospital - you can see his eyes again!
O's allergy results came back severely allergic to wheat and egg (he also tested low-to-medium positive for tree nuts/peanut/coconut/soy, and negative for fish/shellfish/insect stings) which brought one theory to the forefront of the mystery.  

The day of his reaction, my mom had been making empanadas.  Empanadas are stuffed pockets of dough coated with an egg wash and baked or fried - and they are DELICIOUS.  Although O had not been fed any empanada, if he had a virus, the allergist suspected that being touched by my mom, dad, and The Husband who had been handling wheat and egg in making/eating of empanadas may have triggered his immune system to go into overdrive with the trace amounts on their hands or face. 

Or being a nosy toddler, he may have somehow snagged a crumb of empanada on someone's hands, or shirt and decided to eat it without anyone noticing. We'll never really know for sure.

It has been seven months since O's trip to the ER.  As time passes with strict allergen avoidance and no serious reactions, it's sometimes alluring to hope that maybe your precious child isn't as allergic as the allergist and all the tests seem to indicate.  You don't want your kid to grow up with fear of food, or to grow up afraid of dying from a snack, or to die because he, or I didn't read ingredient labels well enough.  You don't want to think about how you'll figure out school for him with multiple food allergies before he's old enough to advocate for himself. You don't want to think about having to take him to the hospital and hoping that you'll administer the epi-pen in time.  You don't want to think about forgetting the epi-pen, or think about the possibility that even the two epi-pens you carry on you at all times might not be enough.

I had a slip-up earlier this year which reminded me how severe O's allergies are.  After a stressful month of complicated health issues, I had spent the weekend in the hospital (story for another time) and since I was feeling like I was ready to get back on the domestic track, I cooked dinner for the first time in weeks (I had been on bed-rest for weeks and hadn't cooked in a very long time.) The last time I went grocery shopping, I bought three boxes of our usual gluten free spaghetti and it seemed like an easy meal to make.  I had previously used up 2/3 of the first box and O had eaten those meals with great enthusiasm.  Seeing that I didn't have enough in the first box for a meal for 3, I opened up a second box and threw it all together and served it for dinner.

O took one bite.  He started fussing at the dinner table and refused to eat.  I remember laughing that this kid was being so fussy - toddlers, amirite?  I tried to put another spoonful in his mouth, and he began to scream-cry.  I said fine, you don't have to eat, wiped him down, finished my meal and went on with the night.

O had been sick the week before and had the remnants of a cold with a chesty wet cough on occasion. We took him upstairs to get ready for bed and noticed how his nose was running like crazy and his eyes were watery.  Great, I thought -  his cold is coming back with a vengeance.  Then he started coughing.  A lot.  And it wasn't his chesty wet cough.  This was sort of a newer dry, hack cough... great, I thought, another long night of coughing.  Stupid cold.  

I took his shirt off to put his jammies on, and then I saw them.  Hives.  On his back.  I told the husband to get the Benadryl and call the allergist's after-hours line to see at what point we needed to use the epi-pens (we hadn't discussed an allergy action plan at this point.)  At that time, we didn't know what had triggered his reaction and while the Benadryl seemed to stop his cough and runny nose, his eye was still swelling. When the allergist called us back he said that since the Benadryl seemed to be working, and since we didn't know the trigger, and since his breathing seemed OK, to just wait and see - but if we hear any wheezing AT ALL, to immediately administer the epi-pen and call 911.  It took about 24 hours for the swelling to go down, and about 2 hours for the hives to go away.  I did not sleep well that night.

I was in a panic.  AGAIN a mystery reaction - not as bad as that first one, but not good either. If I knew then what I know now, I probably wouldn't have waited to use the epi-pen.  It would not be worth the risk to his life.

Weeks later, I was reorganizing the pantry and happened to look at the box of pasta, I was about to put it back in the pantry when something about an artichoke caught my eye and I thought, wait - I didn't know this pasta had artichoke - I wouldn't have bought this with artichoke in it because O has never had artichoke...

And then it hit me.  This box didn't have the Gluten Free triangle that my other box of pasta did.  It was the same size, the same shape, the same color. I grabbed three boxes off the grocery store shelf - and this one - the one I tried to feed to my wheat-allergic child - was not wheat free. 

I think the boxes in stores now are more distinct in color,
but in my dimly lit pantry, I couldn't tell the difference
in color between the gluten free and organic regular pasta.
I had gotten lazy.  I knew I was supposed to check EVERY SINGLE FOOD that comes into my home.  I knew I was supposed to read EVERY SINGLE INGREDIENT EVERY SINGLE TIME I COOK SOMETHING AT HOME.  The boxes looked the same to me, I didn't notice when I was grabbing them off the shelf at the store, and I didn't notice when I loaded them into my pantry at home.  I felt awful. What had I done?  

I cried. Again.  One small bite of a strand of spaghetti caused my son's eyes to swell, hives, coughing and sneezing within 30 minutes of eating.  One small bite he trusted me to feed him.  

I also breathed a sigh of relief because he survived and we now knew without a doubt what caused that second reaction. I'm still working on forgiving myself for that and part of that is making sure I do whatever I can to ensure that he doesn't have to go through a reaction like that again.  It starts with educating myself and others, and raising awareness for life-threatening food allergies.


For more information on food allergies and anaphylaxis visit: foodallergy.org  and kidswithfoodallergies.org



No comments:

Post a Comment

Your Thoughts?