Asher's 7th Anaphylaxis: Lessons

What I am about to say is just my own experience. Always consult your medical team and do your own research. My story should give you ideas on what to discuss with your team and research, it shouldn't be your own plan. 

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Asher: My throat hurts, I think it's the sprinkles. I think I ate too many and it's making my throat itch and feel funny. 
Me: What sprinkles? 
Asher: We're eating ice cream. 
Me: Ice cream? We don't have ice cream.  Plus, we didn't read the label together first.

I walked into the kitchen, got vanilla ice cream out of the freezer and one of the first ingredients was egg yolk.  My heart sinks. I feel almost like I'm going to black out.  How did this get here?  I numb up as best as I can and I tell Asher the hardest thing.

Me: Buddy, that ice cream had eggs.  How much did you eat? 
Asher: Just one bite and as soon as it went down, it hurt my throat. 

He runs to me and cries and says he's scared.  I tell him that's ok because sometimes fear keeps us safe and fear tells us to act and not be passive about something dangerous.

Me: Go lie down, watch some YouTube and I'm going to get you ready for the day because you have on a summer outfit and it's cold outside.  

Really, I was preparing us for a possible ambulance ride. I put on a bra, put on a hat, grabbed my phone charger, made sure we had everything that the ER would need and sat the epi-pens nearby where Asher couldn't see them.  20 minutes passed and I thought oh my gosh, this isn't going to progress.  He's even reacted to eggs baked IN things and this was pure egg yolk not heated up, could he eventually outgrow this one? 

Asher: My belly hurts, I think I'm just nervous and need to go to the bathroom. 
Me: Ok buddy, I won't listen, but I'll be right outside the door.  Does your throat still feel funny? 
Asher: No, it doesn't feel funny. 

Ok, maybe it's just nerves. As I stood outside of the open bathroom door, I messaged a fellow food allergy mom about what was going on and when I hit send, I heard him clear his throat.

You see, anaphylaxis isn't always you eat something and stop breathing. It isn't you eat something and immediately pass out.  You want to stop it BEFORE it gets to that, but you're also prepared for the times that it begins with the worst. Anaphylaxis is any two body systems affected. For example...
Hives AND stomach issues.
Throwing up AND a runny nose.
Sudden lethargy AND hives.
Throat issues AND stomach issues. 

I was thrown off because they didn't happen at the same time.  But when I heard him clear his throat and looked at his face (he looked pale and scared and in pain) I knew.  I should have known without having to hear that throat being cleared or looking at his pale face or seeing my own words typed out to a friend, but I didn't.  THE 7TH TIME HE'S HAD ANAPHYLAXIS, this time with a KNOWN ingestions of a food he's allergic to, and I didn't act as fast as I should have.

I grabbed his epi-pens. As I rushed him off of the toilet, we had this quick conversation:

Me: Ash, what are your symptoms? 
Asher: Stomach pain and funny throat. 
Me: How many is that? 
Asher: <starts crying> I don't want to. 
Me: I know buddy, but your breathing is the most important thing and you've been here before.  Lie down flat on your back and watch me do it. Ok, we take the blue part off and grab it in our fist with our thumb wrapped around too and not on the top.  Then I hold it on your thigh and I push really hard. <pushed the needle in his thigh>  

We lock eyes and count 
1, 2, 3, 4, 5, 6, 7, 8, 9, 10
(you only have to count to 3 now, but he kept counting so I held it on his thigh)

Me: Did that hurt? 
Asher: Not that bad.  
Me: How do you feel? 
Asher: I already feel better. 

His face immediately gained some color and while his voice was shaky and he felt wild inside, he was laughing and he was relieved it was over. I had big sister Zoe hold his feet in the air and I called 911. When I hung up with them, I called my mom.  As always she made it to my home before the ambulance. No matter where she is, somehow Bibi always gets there first.  Then, a friend who knew what was happening showed up and followed us to the ER.

The ER was so packed that we had to wait it out in the hallway, which was fine.  Asher was happy and completely winning over every person in the ER. We had the most amazing nurse who knew all of the YouTube shows Asher likes to watch. Only one person was allowed with him because of the hallway situation so my dad came back with him for about 10 minutes while I went to the waiting room.  When I got back to him, he looked suddenly terrible and wanted to hug me. He whispered, "my belly hurts."

It was kind of shocking because he had been acting so happy. I had even thought well, we made the right decision, but maybe it was never going to get that bad anyway and that's good.  I told the nurse and took him to the bathroom and stayed in there with him.  He said he was going to throw up.  I got a bucket and the nurse came to the door. She said they needed to start an IV to give him Benadryl and steroids and epinephrine.

This is why for Asher we don't use antihistamines first or alone. In fact, they aren't even in our action plan. He only gets them at the hospital and only WITH epinephrine.

Me: But Benadryl lowers the seizure threshold and his epilepsy is uncontrolled as it is, can you give him Zyrtec? 
Awesome nurse: Benadryl is the best medicine for him to help the epinephrine fight this.  Better a seizure than not breathing.  
Me: Start the IV. 

She said they couldn't wait and if he needed more time in the bathroom she would do it in there.  He didn't and we went back to the bed.  Asher is a kid that PROUDLY isn't scared of needles. But he was so scared and she was so amazing with him, talking about YouTube and letting him feel a little in control of the situation by letting him help her.

Asher: <clears his throat and goes pale>
Me: Just do it fast, I'll hold his arm. 
Asher: <cries out>
Me: It'll be ok buddy, hold still. 
Asher: <with tears streaming down his face>My iPad is only at 5 percent <whimpers more>

We all got a good laugh out of that.  He was crying because of his iPad not the needle haha. They pumped him so full of medicines that all counteracted one another in regards to amping him up and slowing him down plus the anaphylaxis and prior epinephrine...he immediately went to sleep.

I began my watch.  Alone. I watched his arms and toes and feet and eyebrows and lips and shoulders twitch over and over and over in his sleep. I waited for a seizure.  My head was pounding from the stress on my body and there was action all around me.  But it was as if it was all blurry while my eyes focused on my little boy. No seizures happened in the 5 hours that we were there and he slept the entire time.  I was glad for that, so he didn't have to feel the wildness within his body. The wildness that was saving his life. It also made me scared that we wouldn't be able to wake him up.

When they released us, the doctor said his name and he woke right up. I called Isaac to come and get us and Asher and I finally ate after not eating since 8:00 that morning. I took a shower and got on the couch.  I slept on and off from about 9pm to 11pm while Isaac stayed with Asher.

At 11, Asher came downstairs (Isaac had been with him in the bed upstairs) and said he had a "migwaine." He crawled on top of me and snuggled in.  All 71 pounds of him. I snuggled right back and we fell asleep until 5am when I woke up with my whole body in a panic.  Which I expected.

Anytime anything like this happens with Ash, I'm always completely together when it happens and the rest of the day.  Numb, even.  Day 2 dawns and my body feels such intense panic but my mind is numb.  At some point, my mind catches up with my body and I finally cry and lose it. I'm writing this out in between the body/mind connection.  I'm still numb and waiting for release.

Last night before I fell asleep, Isaac and I talked about how we can do better and what we learned. We still don't know which one of us bought that stupid ice cream and I'm kinda glad about that.  When something like this happens, it's hard not to heap guilt upon yourself.  Instead, we're focusing on the lessons we learned and we hope to help others with those lessons. Here are a few notes, not a comprehensive list:

* As a family, we will review the not eating unless you read the ingredients every time rule.  Isaac and I always read the ingredients before we cook or serve a thing, but we need to remind the kids. We also read the ingredients as we buy groceries, but because sometimes we can fail at this, we also re-read them every time we serve them.

*We are reinforcing the do not eat unless you tell an adult rule.

* Especially after seeing that the reaction came back even worse once we were in the hospital, we reminded one another to use  epinephrine with two body systems. Period. Every time. If we're thinking of using it, we just do. This has always been the rule by the way, it's just wild how much you can over think things in the moment.  We did ok, but next time we can do better.

* This is the first time we've use an actual epi-pen in a lot of years because with the last two episodes of anaphylaxis we used the Auvi-Q device (an epinephrine auto injector that has since been recalled).  Sometime within the past year, I read about instead of swinging the epi-pen into the leg, you can place the tip on the thigh and push really hard.  I did it that way this time and it was amazing. It seems like there is less risk of gashing the skin open or missing the thigh or sliding off of the thigh. Those were always my fears.   (*this is just what I decided to do, I'm not saying it's the right thing for you. Consult your doctor and do some research on it if you're interested in learning).

* Secondary reactions are REAL and people need to be made more aware of them. While we always watch closely, I was shocked that it came back worse after we used an adult sized epi-pen and he recovered so quickly at home.  ALWAYS ALWAYS ALWAYS go to the ER after using epinephrine.

*We always do, but it's worth saying: ALWAYS carry two epinephrine auto injectors with you AT ALL TIMES. One time we had to use the second one in the ambulance. You may need the second one.  Also, the first one may not work.  YOU NEED TWO, please remember this.

* What if we would have ignored the seemingly minor body system reactions the first time around because alone they didn't look life threatening?  I don't even know, but if you question whether you should use epinephrine, JUST DO IT. Just do it. The point of using epinephrine is to use it as quickly as possible BEFORE your body progresses to severe breathing problems or cardiac problems.  Do. Not. Question it. If breathing is affected and it's the only symptom, epi right away.  If any one symptoms is severe and you're worried, use epinephrine. If you feel funny about it and in your gut think something is not right, use epinephrine.

IT DOES NOT HURT TO USE EPINEPHRINE NEEDLESSLY, but it can cost a life if you need it and don't use it, or even don't use it fast enough.

Today, Asher is wild as a buck and his body can't stop moving.  But he's alive. Again.