Anaphylaxis Strikes Again

Nolan w/ his new MedicAlert bracelet

We're taking a break from house stuff to let you know about a terrifying event that happened to our family.  

Last week our most allergic kiddo, Nolan, had another anaphylactic reaction. This was the worst one he's ever had. He's had 2 previously - the first at 10 months of age when we didn’t have epi-pens yet.  We did not even know he had any food allergies yet, though we suspected.  The second episode of anaphylaxis was about 4 years ago.  We administered the epi-pen when he had obvious mouth/lip/tongue swelling. And now, this most recent anaphylactic reaction almost 2 weeks ago.  It was an overwhelming event and came at a time when our life and home are already so chaotic and we have been living under such stress for so many years. He is okay now, we made it through, but I want to share our story so that hopefully it can help another child or another family facing such an awful, terrifying event such as this.

Unfortunately at this point I don't know for sure what caused the reaction.  That is a scary thing because that means it could happen again, since we can't be sure what caused it.  But he had 2 things in the timeframe before the reaction began - a cup of tea, and a smoothie, both of which had only ingredients I knew he'd had before with the exception of a few dry raspberry pieces in the tea - he'd never had raspberries before.  I am in contact with the manufacturers of these products to figure out what cross-contamination we might be dealing with.  I also am looking into some other ideas, but for now, it is unknown what caused the reaction.  He drank the tea just before 4pm, and then I made the kids a smoothie which they had around 4:30pm.  

At about 5pm he vomited. At that time I checked him under his shirt, looked at his face, just looking for any indication it was an allergic response, but at the time I didn't think it was at all. The smoothie was very rich and sometimes - not often - but sometimes, he can't handle rich foods. He had no other signs or symptoms. I was cleaning a horribly stinky, dirty closet at the time, so I went back to cleaning, but 15-20 minutes later I noticed he was lying in bed. I went to him, asked how he was feeling. He said he, "just didn't feel well". He looked ok so I just let him rest. I saw him again another 15-20 minutes later, he brought a tick to me that he'd found crawling on him.  Again, he looked fine to me.  The time-line gets a little fuzzy from here, but around dinner time which would have been 6-6:15, my girls called the others downstairs to eat, and then I heard them shriek and one ran upstairs to me, telling me that he had hives. 

At this point I wasn't sure that the two - the vomiting and the hives - were related because they were so far apart. But he did have hives, big ones, all over. He is very contact reactive, so I put him in the tub to wash off, just in case that was part of the picture. He was sooooo itchy, I've never seen him freak out so much about the itch. Then he said he was having trouble breathing. I gave him benadryl and started a nebulizer treatment, then called our allergist. The allergist is 1.5 hours away now, but we have not switched doctors yet, I didn't know what else to do. I will say, now that I am not in a panic, I know that our allergist tends to be very unmoved and skeptical that it's ever as severe as it really is. (I do not appreciate this and already wanted to find a better doctor, but it's just been a crazy few months with little time to look for a doctor in our insurance network, etc).  But in the moment I wasn't thinking about that tendency of his.

The allergist, was also not convinced this was all one reaction to the ingested food (which, remember, at the time, I didn't think there was anything he'd eaten that he could possibly be reacting to), and he advised me to watch him for 15-20 minutes to let the benadryl take effect. He said take him to the hospital if the breathing doesn't get better after the treatment, or if he starts to have trouble again or seems confused. 

There was no oral/pharyngeal swelling - not through the whole thing. And I think that's what I was waiting for with the epi pen. We have given him the epi before, but it was obvious oral/lip/tongue swelling.  He never showed those specific symptoms this time.

Around 6:45-7 he said he was hungry, he was breathing okay and the itch seemed to subside a little so I let him sit down to eat.  Shortly thereafter he got up and walked to me, and then just kind of melted to the floor. He didn't pass out, but maybe his knees buckled? I don't know. He curled up on the floor, and that's when I knew this was not my kid, something was very, very wrong and I called 9-1-1. We are in the middle of no-man's land, 30 minutes (if you're truckin'!) to the nearest hospital and I was the only adult home with our 6 children. I did not feel comfortable driving him myself. So, then we waited. I stayed right by him, he was very calm and I did ask him questions and he was alert to who he was, his surroundings, etc. But he remained lying on the wooden kitchen floor. It was so strange.

At 7:30 the EMT's arrived. They came in, assessed him - what is he reacting to, what had happened, his medical history, etc. The main EMT said she thought I could take him to the hospital, or she could take him - it was up to me. He seemed "okay" enough to them. He was lying in my lap, sort of sitting up, leaning against me. She brought in a heart monitor and took a reading “just to be sure”. As she did that, I asked her to check his blood pressure, knowing that blood pressure can bottom out when they are going into anaphylactic shock. She basically told me no.  She said, “Nah, it’s really not very informative with little kids”. UGH. Then she looked at the screen and said, “Oh, what’s that”, and then explained he was having an arrhythmia. He had a premature beat. Then, he turned blue and passed out!! So, they scooped him up and headed to the ambulance. I followed with my other 5 kids, and got there about 20 minutes after them, I guess, according to his chart. I couldn’t run all the lights and get around traffic to keep up with them. (Most agonizing and terrifying half hour of my life, not knowing how he was in that ambulance, was he going to make it? I’m not sure how one ever fully recovers from that).

According to his record, he arrived at the ER at 8:06pm.  When I found him in the ER, the EMT told me that during transport he’d vomited again and they'd given him more benadryl via IV. I know now that I should have given him the Epi, but why didn’t THEY?! She also said that when she asked Nolan his name after the vomiting, he said “I don’t know”, but she dismissed it as him “joking with her”. !!! Oh my word, why would she not take that confusion seriously, given all the other signs and symptoms?!?

In the ER they finally gave him prednisone around 8:30pm. But still no epinephrine, even in the ER. This ER staff was the worst I’ve ever seen, everyone might as well have been wearing robes and slippers at the pace they were moving. Before leaving, the EMT stated the hives looked better.  I said, "No, they just have all swelled together so that you can’t distinguish them, which is typical for Nolan." No one said anything. It was as if I hadn’t said anything at all. I pointed out his ears, they were just so, so swollen and red.  But everyone ignored me.

Brian arrived around 8:45pm.  Around 9pm they put him on oxygen, though no one said why.  Then a little later they gave him some IV fluids. A little monitoring here and there, but pretty much I just sat there watching him myself. He started sneezing with the oxygen - they used a nasal cannula, I cannot imagine why not just a mask for a 7-year-old, but whatever - it was a minor thing compared to the lack of emergent care. He couldn’t stop sneezing. They finally just took the oxygen off, but he continued sneezing.

They discharged us just before 10pm. This, I could not believe. Around 9:45pm the “doctor” came over and said, “Oh, these have really lightened up”, referring to the hives on his legs and ankles. Yes, they were lighter. They were pink rather then bright red, but no smaller and certainly no less visible. I, again, pointed out how swollen his ears still were. No response. I was utterly dumbfounded. The nurse took Nolan's IV and stickers off, handed me discharge papers, saying, "Here ya go", and pointed me to the door.

The next thing I knew, I was in the parking lot looking at my son, knowing he should still be in observation for at least a few hours, probably overnight. I just could not believe this experience. I sat in the car with him, thinking it all through and then headed home. He continued to sneeze until we reached home and he got into bed (our bed! - we watched him through the night, something the ER should have done). He did change his clothes before getting into bed, and even after the 30+ minute drive home, he still had obvious hives. At that point they were much smaller, but still clearly visible.

I did not sleep that night (or many nights since). I laid there with him, checking him every so often. I could not turn off my mind. ...What had he eaten that was missed on my allergy radar?...Why didn't I give the epi? --> wait a minute, I am "just a mom", why didn't any of these medical personnel trained in emergency care give him epinephrine?!? ...How the heck are we going to live out here in the middle of nowhere with this hyper-allergic kid and that crap-hospital?! ...Why did no one listen to me - the EMT disregarded my request for blood pressure reading (which, by the way is a basic vital sign!!); the doctors and nurses ignored my observations of his condition.

I contacted Putnam County Hospital during those sleepless hours that night, filling out the online contact form stating I wanted to file a complaint about the care he received (or, really, did NOT receive).  I have since spoken on the phone with the ER manager, who told me she's received several complaints that her ER staff is "too laid back".  Several?!  Really?!  I am writing a detailed report of the incident to send to her, and to the hospital administrator, including current guidelines from the National Institutes of Health for anaphylaxis and food allergy.  If you or someone you know suffers from food allergies, asthma or both, please take the time to read this short primer on anaphylaxis.  I made the mistake of thinking that it's just oral/throat swelling that requires epinephrine.  I know better now.  But it's rattling to the core to know that your local emergency medical care teams do NOT know or understand there are many more presentations of anaphylaxis and that epinephrine is the only life-saving treatment.

I also have been in touch with the director of the Owen County EMS, which is the only EMS service in our entire county.  They're it, so we've got to do what we can to educate them.  On the phone, the director was unmoved, telling me, "Epinephrine is really hard on the heart".  I'm pretty sure that dying is even harder on the heart!  So, I will be giving him a report in writing as well, along with the NIH written guidelines for anaphylaxis treatment.  I plan to hand deliver it with all 6 children at my side, so that the EMS team can meet us in a non-emergency way, as the likelihood of us seeing them again, unfortunately, is pretty high.

Please share our story with anyone you know who deals with food allergies, asthma and or anaphylaxis.  Did you know if you have food allergies AND asthma that the likelihood of death from anaphylaxis is higher?  I didn't.  Not until after this incident.  I am NOT thankful that Nolan almost died, but I am thankful for the tools and resources available so that I can be better prepared and informed for next time.  And hopefully, with diligence and determination, I can enact change in my local medical community to be better prepared and informed as well.  I can hope!