I Never Thought We’d Have to Think About Needing Epinephrine

I’ve been putting off talking about this all week. I have blogged and blogged about all of us needing to develop compassion for kids with life threatening food allergies. I even wrote an article last week about how my son wants to protect his friend with the life threatening peanut allergy. And just this week, we found out that his dairy allergy has the potential to get worse. This is scary. Like going from being the person holding the rope to help others to being the one on the edge of the cliff that needs the rope.

I took my son to the doctor last week because he had developed a new symptom: taking a lot of deep breaths, a lot of yawning, and some unusually bad circles under his eyes (they call them “shiners”) with some fatigue.  A bit of Zyrtec at night seemed to have made him feel better the next day. Maybe it was all due to seasonal allergies. We have a nebulizer at home with a steroid medication that helps him when he has the stridor barking cough that happens with the change of seasons. He never outgrew the stridor/croup, and I got tired of going to the ER every three months, so the pediatrician gave us the nebulizer and it has come in handy when he has had a breathing panic in the middle of the night.

So, wondering if he was developing the beginnings of seasonal asthma, I made an appointment with a well-known allergist here (recommended by other parents of allergic kids). We were able to get in the next day due to a cancellation. I figured we would walk out of there with a prescription with an inhaler. Plus, I did want to talk about ongoing monitoring of his food allergies.  It’s been a year since we moved here. And slightly over a year since he saw the allergist in New Jersey. And I know it’s important to keep going periodically to see if new allergies have developed.

So there we were, talking to the wonderfully understanding and patient allergist who went over seasonal and food allergies with us. Sometimes, when respiratory symptoms arise, it is hard to tell which one is happening: food or environmental. But my son was fine and the deep breathing was not the labored breathing that one sees in the throat area with asthma. So no need for an inhaler but to continue to use the nebulizer should he feel out of breath again.

I let the allergist know, too, that a few days earlier, my son had been food bullied (yes, food bullying is a thing). A kid at his lunch table rubbed an M&M cookie all over his face to see what would happen. My son felt like he’d get in trouble with the teachers if he got up from the table, so he didn’t.

This is disturbing because he is allergic to dairy and does not tolerate wheat without getting sick.

The dairy is a confirmed allergy, which means that it is an immune response, not a digestive one. Though, up to this point, the symptoms have been digestive (vomiting and stomach pains that last for hours). But after the food bullying and then the breathing issues, I was told that symptoms can also turn respiratory.

I wasn’t expecting anything more than digestive.

The doctor was concerned about the food bullying and instructed my son to leave the table should he be threatened again. We also encouraged him to tell the teacher to call me if he/she has a problem with him getting up from the table. The doctor was also concerned to hear that last year, my son’s then-teacher didn’t take his food allergy seriously when, on the one day that I forgot his lunch, she had put cheese and croutons on his salad and said “I bet you’ll be okay with a little bit.” I saw the salad because the school called me and I quick packed his lunch and got it to him. I sat and had lunch with him and ate the salad that he couldn’t eat. I was proud of him for not eating it, but thoroughly disappointed the the teacher did not take him seriously.

I had not reported the teacher last year because I was working so hard and was so exhausted that just managing daily life was enough of a chore.  And I just vowed to never forget my son’s lunch again. It gets tiresome to constantly have to work on this issue. I could have (and should have) made a big deal out of it, but I didn’t.

The doctor provided a document – a food allergy plan  (also called a 504 plan) – that I could use to work with the school principal. This year, I’ve had time to make the phone calls that I’ve needed to make. The principal has been an absolute gem in working with me. Tennessee also just passed a law that allows schools (if they want to take advantage of the new voluntary law) to stock epi-meds that can be used for any student without a prescription, and without liability on the part of the school. This is great because most first time anaphylaxis episodes happen at school where parents can’t control the environment as much as they can at home. Example: I don’t have nacho cheese chips with milk dust all over them here at home, but plenty of kids have them at school and you know how messy kids are. One food bullying incident, perhaps another kid rubbing his nacho cheese dusty hands all over my son’s face, and he has officially ingested milk through his nose. It is completely out of my control.

The good news is that the doctor said that about 50% of kids that have milk allergies will outgrow them.

The bad news is that it could also get worse. And anaphylaxis can and does happen with milk allergy.

The doctor offered to write a prescription for epi-meds for him should it ever actually get worse.  I decided to opt for it. I don’t know any parent that wouldn’t want to have a lifesaving medicine on hand should it ever be needed.

The more I think about it, and imagine the episodes where other parents have had to use epi-meds, I feel immensely lucky that his allergies have never caused him to stop breathing. I feel immensely lucky that I have never had to fear for his life.

Until now.

The fact that my son has an allergy that *could* get worse and that has even the remote potential of causing him to stop breathing scares the living daylights out of me.

I thought his reaction would always be digestive. Not that 8 hours of vomiting is fun. It’s horrible suffering that I do everything I can to prevent, but it’s not at the level of which I need to call 9-1-1 and administer CPR.

And after being so actively involved in the food allergy community as of late, I’ve learned that first time anaphylaxis reactions happen at school and are more likely the older the child gets. The demographic at highest risk for anaphylactic deaths are teens. So, I’m really nervous about my son’s future. And being prepared is going to be no picnic. This means that he is going to have to be visibly different than his friends and wear a medic bracelet and carry his epi-meds on him at all times. It’s going to cost me $30 plus shipping just for the really cool camouflage pouch alone. I don’t really have the funds for it with both me and my fiance being out of job at the moment , but I’m going to try. If that’s what he wants to carry his lifesaving meds, then that’s what he shall get.

As for the meds, I went with the Auvi-Q version rather than the Epi-Pen. It is a speaking device that will walk your child, or you, or your child’s teacher though the delivery of the meds. This is good because the sheer panic and fear and adrenaline that happens in the midst of dealing with a reaction could prevent a person from properly giving the meds. It does a countdown and sounds a beep when finished. No guesswork. It comes with a Trainer that can be used to train the child and any other person that would have to administer it.

Now I have to think about whether or not I should drive my kid to school and pick him up since the bus driver may not be trained in handling anaphylaxis emergencies. What else am I missing?

Now I’m one of those parents that has to think about my child’s life being in danger every day… during the 480 meals (lunches and snacks) where I will not be in his presence to control the environment and watch the children around him like a hawk.

It’s a strange day to be on the Epi-pen side of this scenario. I’ve talked about other kids needing compassion and support. And for us, reality has set in more deeply. A lot of contemplating this week. And a new level of fear to live with. This is kind of scary.

For friends and family that are reading this, it is important that you know about this in case his milk allergy gets worse. If you are a family or friend that has my son in your care, feel free to utilize the Trainer and learn how to give the medicine to him.

And thank you for reading this, for your compassion, and for your support.