Now that you know that, I’ll tell you that my 8 year old allergy boy had an anaphylactic reaction on Sunday. It was the worst and scariest allergic reaction we’ve ever seen. I Tweeted/Facebooked about it a bit as it was happening and I’m sharing it today because we all (myself included) need a reminder sometimes. Anaphylaxis is real, the danger is real, and if you are an allergy parent, you can never let your guard down. Most importantly, if you know what to do when someone has a severe allergic reaction, you can save a life.
On Sunday we were at the house of good family friends in Barrie, which is about an hour from our house. These family friends are long-time friends of Mr.FamilyNature’s family. For all intents and purposes, they are family.
The host of the BBQ, M, talked to me about my allergy boy’s allergies when we got there. She asked me what foods we needed to be careful about. I told her that the only concern for him these days was tree nuts. M insisted on taking some almonds off the table even though I told her it wasn’t necessary. I told her that my allergy boy was really good about his allergies, knowing not to eat anything he’s not sure is safe.
We see these good folks once or twice a year, and as you do, we spent some time chatting in the kitchen catching up. We talked about my allergy boy’s allergies and how he’d grown out of his dairy, egg and banana allergies since we’d seen them last.
You see, allergies are always at the top of our minds. Our family and friends know, and they talk to us about them. I am informed. I talk about allergies with whoever asks. We are careful and we are prepared. Despite all of this, mistakes happen.
This time, the mistake was mine. When dessert was served, my allergy boy came into the kitchen and asked me if he could have a brownie. I said, “Sure!” and helped him get one. I knew who made them and assumed they were safe. I know this was wrong. I should never assume and I take full responsibility for this mistake.
A minute later my allergy boy came back to me with the brownie in his hand – a small bite missing. “Mummy, this has nuts in it,” he said. I sat down with him and told him we were going to keep a close eye on him. I told one of the other kids to go get my purse (where I keep the Allerjects).
My allergy boy was crying. He was really scared. He told me his lip felt funny, his mouth was itchy, and his tongue felt tingly. I could see his lip swelling already. Then he said, “My throat feels itchy.” I knew what had to be done.
I grabbed the Allerject. Mr. FN held our boy while I injected it. I told M to call 911. I noted the time, it was 8:44. I figure ingestion was at about 8:40.
My poor boy. He screamed when he was injected. Most people don’t realize that these autoinjectors really hurt. The needle my boy was injected with was 23 gauge, 1.6 cm long*. The needle comes out with force.
We waited outside for the ambulance. Mr. FN and I were trying to calm our allergy boy down. I could tell the swelling in his lip was going down. It was hard to tell if his breathing was affected. When we were outside I thought he was short of breath and he was gasping a little but he was also crying really hard so it was difficult to tell. Mr. FN also noticed that it was hard to understand him because his tongue was kind of numb/tingly.
When the ambulance arrived, my allergy boy and I hopped in the back. The paramedics were fabulous. They immediately got my boy hooked up to monitors and they checked all his vitals. Everything was good. You could still see that his lip was swollen but it continued to get better. On the way to the hospital, the paramedics gave my allergy boy a needle with Benadryl and checked his blood sugar. All seemed well. The paramedics had another dose of epi ready to go just in case.
We made our way to the hospital like we were going for a Sunday drive. My allergy boy had calmed down and the Benadryl was making him sleepy. The paramedic riding the back was very reassuring. She told me that they don’t hesitate to give a second dose of epi, but that she had absolutely no concerns. All of my allergy boy’s vitals were normal and stable. We rode to the hospital chatting about allergies – she’d had anaphylactic reactions herself and we were swapping stories.
We arrived in hospital triage at 9:34. All was well. I answered questions and gave the staff all the information they needed to check my boy in. Eventually, we were led to a room where we settled in. The ER doc came in and checked my boy over. She said that I had done the right thing by giving him the Allerject and that everything looked fine. The swelling in his lip was almost undetectable and he had no other symptoms. They gave him a dose of pediapred and gave me a prescription for two more days’ worth. The plan was, they’d watch him for a couple of hours and we’d be released around 11:00 pm. I updated Mr. FN, who’d taken the other kids home. He updated M who was going to drive my allergy boy and me home after we were released.
So, we just hung out. My boy was fine. I was trying to find a spot in our room where I could get a signal to update on Twitter/Facebook**, and my boy was sipping on apple juice.
At about 10:45, my allergy boy started getting itchy. I checked him over and he was red around his upper legs/lower torso. I know this was new because after my allergy boy ingested the walnut, I checked him over everywhere. Front, back, legs, arms, mouth – everywhere. I looked with my eyes and felt with my hands because sometimes you can feel hives before you can see them. Between the various medical staff and me, my boy had been checked over like this many, many times. This was definitely new.
I called the nurse and she came in to check him. She did not seem concerned but said she’d let the doctor know. A minute or two later I check again and the redness was turning to hives. Once you’ve been around the allergy block a few times you know hives when you see them – they are quite distinctive. These were definitely hives and they were definitely spreading.
I went out again to the nurses’ station where the nurse was just telling the doctor. I told them both they were spreading and getting worse. They came in right away. The doctor looked, and she felt. She said, “Yep, this is real.” I knew exactly what she meant.
The thing about anaphylaxis is that you don’t exactly know which allergic reactions are going to turn truly dangerous. Hives around the face/neck/mouth are definitely a huge warning. So are breathing difficulties, low blood pressure and nausea/vomiting. But once you see any of these symptoms starting, you treat. If you wait to see if it’s going to escalate into full blown anaphylaxis, it might be too late. Epinephrine given in proper doses is very safe so you always give it if you suspect a potential anaphylactic reaction – even if you’re not sure.
By the time we got to the hospital – hell, even by the time the paramedics arrived – my allergy boy was getting better. None of the medical staff really even saw any of his symptoms. I never, ever got the sense that they doubted the allergic reaction, but when we saw these hives come up a few hours later – maybe when the epi and Benadryl were starting to wear off – we all knew that this was the real deal.
I was starting to feel very anxious again. We had never experienced a reaction like this before. The one time we had to administer epi, it worked quickly and there were no other symptoms. This was different. New symptoms, hours after the ingestion were very worrisome to me.
The doctor was very reassuring. She insisted that hives are not an emergency. Breathing, airway, blood pressure – these are the things she is watching out for. All of these were fine. My allergy boy had all kinds of wires attached to him monitoring his breathing, oxygen level, blood pressure, and heart rate. All were good. The doctor told me that if it got worse again, she’d give another epi, but that they don’t give epi for hives. The only thing to do is monitor my allergy boy closely and wait for the pediapred to start working (my understanding is that this takes 4-6 hours). At this point, there were a few hive clusters around his groin area and the top of his legs, and a single hive on his back.
Sometime around 11:00, M came to the hospital. I’d tried to get in touch with her and Mr. FN to tell them that we weren’t going to be released at 11 after all, but with practically no cell service in the hospital building, this was tough. By the time Mr. FN got in touch with M, she was already at the hospital wandering around looking for us. When she found us I updated her. I took the opportunity to go pee, and go outside to get cell service and send an update. I went back in and thanked M, and told her she should go home. She wouldn’t hear of it, “how will you pee?” she asked. Good point. So she stuck around. I was so glad that she did. She was great company. We chatted as my allergy boy slept.
I decided to go off in search of coffee and so I went for a walk and found the 24 hour Subway in the hospital and got a coffee and a sub. I went outside to check my messages and update Mr. FN again, then I headed back to the room.
Coming down the hall I knew something had changed because I could see that the lights in my boy’s room were on. As I got closer, I could hear him whimpering.
I got in and M updated me. My allergy boy woke up with more hives and itching. M had let the nurse know and the nurse came in and looked, then scurried off. I looked at the hives and they were much worse. They were spreading like crazy. I went to the nurses’ station again and talked to another nurse. As it turns out, our nurse had gone to get another dose of Benadryl. I asked them to call the doctor again.
The nurse came in and administered the second Benadryl dose. It was about 1:15 am. The shift had changed and a new doctor was on; he came in and assessed. The hives were spreading. The doctor insisted again that hives were not a concern; it was just the allergy running its course. Vitals were all good. They didn’t want to give him more epi because they said that it probably would not do much to help the hives anyway. This is contradictory to what I’d been told previously, and to what I’d witnessed having given my allergy boy epi twice now. I started to feel kind of annoyed at this point. What was the harm in giving him another dose of epi? We’re told over and over that it’s a safe medication. Better to be safe than sorry. Other than feeling agitated there are no side effects. The doctor just said to give the second Benadryl dose a chance to work.
The nurse got my allergy boy some cool cloths to help soothe, and brought him some cards/colouring stuff in an effort to distract. There was no distracting him.
The hives continued to get worse. M talked to my allergy boy constantly, asking him about recent movies he’d seen, school, whatever else she could think of. She was patting him on the back and legs, trying to help soothe the itch without him scratching. Eventually M and I were holding my boys hands so that he didn’t tear his skin apart. I could see the hives spreading. There were cords everywhere. My boy was writhing in distress. He was crying. He was terrified and in agony from the itching. He was begging us to take off the sticky things that were keeping all the wires attached to him. It was absolute torture for him and torture for us to watch, helplessly.
I noticed that hives were beginning to appear on his neck, then his eyelids, then around his lips. The hives on his back, chest, groin and upper legs were morphing from hive clusters into giant hives. It was grotesque***. I called the nurse again and she brought the doctor back in. I was trying really hard not to be a hysterical parent, and I think I did a pretty good job, but on the inside I was panicking. I asked the doctor, “Is there nothing else you can do for him?” Again the doctor said that my boy didn’t need epi and that it likely wouldn’t do much for the hives and itching anyway. I asked, “But is there any harm?” This is all quite blurry and I don’t remember the doctor’s reply but a moment later I heard him tell the nurse to get another dose of epi.
A couple of minutes later, the nurse came in with a needle of epi – this was his second dose of epi. I was holding my allergy boy’s arms, and the doctor was holding his leg. I’m not sure what body part M was tending to at this point but she was right there too.
The epi started working instantly. My boy screamed when he was being injected but by the time he was calming down from that, the hives and itching were beginning to abate. Within 15 minutes we had gone from a state of complete chaos, to my allergy boy drifting off to sleep. I went to call Mr. FN to update him. It was around 1:45 am. I told him he had to come to Barrie. Things had settled down, but if they got worse again, I needed him there. He made arrangements for the other kids and headed up. He got to the hospital around 3:00 am. My allergy boy was sleeping soundly and M and I were trying to get some rest in the most uncomfortable positions.
We told M to go home. She was reluctant. We insisted she go home and get some rest. She did but not before offering to get us food/coffee, offering her home if we needed to crash, and anything else we could have possibly needed. M was a tremendous support to us through this ordeal and I just don’t know what I would have done had she not been there. (M, you are the best. A million thanks to you for everything. xoxo)
My allergy boy slept soundly until around 6:00 am. When he woke up, other than scratch marks, there was no trace of a single hive. It was remarkable.
The doctor came in to assess. We chatted for quite a while – about what had happened, what to expect over the next couple of weeks. He said we might see hives come and go for up to two weeks following this incident. My boy has to take pediapred for two more days and antihistamines for a week. He also takes Singulair for asthma, uses a puffer when needed, and a nose spray when needed to combat the symptoms of environmental allergies.
Here’s my completely lay-person understanding of how the medicines work:
- Epinephrine (aka epi, Allerject, EpiPen) is fast acting, immediate relief for anaphylaxis. I’m not sure how long epi typically works but it is short-term. The paramedics had been prepared to give my boy another dose in the ambulance and the doctor in the ER told us some people who come in experiencing anaphylaxis need it every hour.
- Pediapred is a steroid that helps deal with the symptoms of the allergic reaction. This takes longer to work (4-6 hours) and is longer-lasting.
- Benadryl/Aerius are antihistamines. They try to stop the body from reacting allergically.
All three of these were absolutely essential during my allergy boy’s treatment. I figure my boy needed the second dose of epi because the first doses of both epi and Benadryl were wearing off, but the pediapred had not started working yet. By 6:00 am, the doctor says the pediapred had kicked-in, which is why he didn’t re-react again.
Today is Wednesday, and things seem to be fine. We’re watching my allergy boy carefully and giving him all his meds as instructed. Monday he was a bit wheezy and needed his puffer three separate times. His eyes were itchy and his cheeks were flushed at bedtime. Yesterday a random hive popped up on his leg. I don’t know if it was a hive related to his reaction or a bug bite. Either way, we are on guard. By now the risk of anaphylaxis is pretty much over (something called a biphasic reaction in which anaphylaxis can return up to 72 hours later – but this is very rare).
I spent most of Monday on the verge of tears. I had to tell myself to stop clenching my teeth and take deep breaths. That was one of the scariest experiences I’ve ever had and it’s taken some time to process the whole thing. This is true for all of us. The other kids have asked a million questions and we have all talked this to death. I’m sure there will be plenty more talking and processing.
Our allergist called yesterday because the hospital had faxed the ER report and he was wanted to check in. We’re going to see him tomorrow for follow up.
Thank you so much to everyone who has offered support and sent messages/made comments. It means so much.
*I actually had to call Allerject to get this information because you never see the needle. The needle is concealed and then once it’s administered the needle retracts immediately.
**Facebook/Twitter: I sometimes wonder if people think I’m weird for Facebooking/Tweeting this stuff. Nobody has ever said anything but sometimes I wonder. For me, this is raising awareness. This is real life. This is what it’s like to be an allergy parent and experience an anaphylactic reaction. It was also a really good way to update friends and family, many of whom had been at the BBQ when the reaction started.
***I wish so much that I had taken a picture of these hives. I tried to a couple of times and was fumbling around with my phone but then I felt foolish for trying to do this during a crisis. That and I needed two hands to tend to my allergy boy.
UPDATE: I wrote an update to this post called Coming Down from Anaphylaxis.