Anum's Story

“You never how strong how are until being strong is the only choice you have.” -Bob Marley

When I first filled our EpiPen prescription, I never imagined I’d have to use it. I learned to use it and taught those caring for Musa how to use it…but in my mind, I was being safe and preparing for a highly unlikely situation. Boy, was I wrong. Musa has had 4 anaphylactic reactions that have required him to be epipened. Three of those four reactions were outside the home. Writing about his reactions and going through the pictures is so hard…but if this helps anyone else then it’s worth it.

The first time Musa reacted to ginger in a rice dish he had eaten. I, however, didn’t know he was allergic to ginger until we had him tested after the reaction. He ate the rice but didn’t react until an hour later. He began throwing up, coughing hoarsely and his breathing was short and difficult. Thankfully, I was able to recognize the symptoms for what they were and administered the EpiPen quickly. I had my brother call 911 while my husband grabbed the baby bag and used EpiPen. By the time the ambulance arrived we were ready to go. Lesson learned: Anaphylaxis can happen right after ingesting an allergen or in this case an hour after. (I’ve read multiple stories of people reacting up to 17 hours later!)

The second time we were at my in laws’ house for a family gathering when tea was served. This particular tea was made with milk and a mixture of different nuts. The tea was being set on the table for the adults to enjoy when it caught Musa’s eyes. I remember seeing him walking towards the cup and not being able to get to him before he dunked his hand into the hot cup of tea. I immediately picked him up and took him to the bathroom to run his hand and arm under cold water. I called the pediatrician even though everyone insisted Musa was fine and not to overthink it. His pediatrician recommended taking him to the ER because of his milk allergy. I didn’t quite understand why they said that until we reached the ER. 

It was night time and the drive to the hospital was dark but once we got there and took Musa in we saw what he looked like. He needed to be given the EpiPen since he was showing signs of a reaction- his blood pressure was off, his heart beat was a bit irregular and his skin was swelling up. Lesson learned: anaphylaxis can occur through the skin, not just from ingesting.

The third time I didn’t act as quickly as I should have. We were at Red Lobster to celebrate my mom’s birthday. We picked Red Lobster specifically because we knew Musa could have the fries from there. He had them in the past and we wanted to make sure he felt included. He immediately started to throw up after the first bite. We took him outside to get some fresh air at which point his tongue began to swell up. He was crying and uncomfortable. I should have given him the EpiPen when his tongue started to swell but decided on Benadryl first. He refused to take the Benadryl but his swelling went down. We decided to head home at that point. On the way, Musa’s tongue started to swell up again so we went straight to the ER. There, his blood pressure and heart rate weren’t normal. The doctor administered epinephrine and we stayed a couple hours before being discharged. Lesson learned: epi first and epi fast.

The fourth time, about a year ago, Musa ate allergy safe cookies that were made on shared equipment to egg and milk. This was the scariest incident because Musa needed two doses of epinephrine about 30 minutes apart. He was at home when he reacted and the worse part was that I wasn’t there. My husband called me at work. He knew the signs of anaphylaxis and as much as he didn’t want to the be the one administering the EpiPen he did. I walked him through it over the phone as I rushed home. When we arrived at the hospital, Musa had a second reaction and was given another dose of epinephrine. This reaction is the one Musa remembers and what causes him to downplay how he’s feeling at times. He’s afraid of the epipen and doesn’t want to go through that again. Lesson learned: we needed to eliminate foods made on shared equipment.

During each incident we were a nervous wreck, stressed and incredibly scared. What got us through, though, was being prepared. We knew where our epipens and other medication were, who to call, where to go, etc. We never want to think we will have to epipen Musa but we always stay prepared as if we have to. Afterwards, we take time to think about what happened and how we could have prevented it or what we can do differently to avoid a similar situation in the future. We are learning as we go and hoping to help others in the process!

- Taken directly from Anum, So Allergic Life.