It was not to be….

Our first peanut encounter was at the Beluga tank when the girls were watching the whales beside the tank. A little boy toddled up to our empty wagon and promptly dropped his peanut butter sandwich into it. I couldn’t believe it. What made it worse is that he then smeared the peanut butter all over the wagon while he tried to retrieve it. I politely asked the mother if it was indeed peanut butter and if she had any wipes to help me clean it. She grudgingly helped me.

Then, as we headed through the “tropical zone”, we ended up walking beside a family that had 4 kids all eating… you guessed it… peanut butter sandwiches. I could smell the peanut butter before I saw the sandwiches. It was pretty overwhelming for the senses in fact. I told my brother we needed to get away from this family as I watched their kids put their fingers all over the glass of every display tank and then lick their fingers and then touch the glass again.

It was shortly after this that Alicia’s reaction began. She wasn’t even touching the same glass. She was sitting in her wagon eating her lunch and suddenly said, “Mommy, my eyes hurt.” It was dark where we were but I could see her rubbing her eyes and they looked swollen. I told my brother we need to move it to where there was better light so I could see her. We ran to the main area where there was good light and indeed Alicia’s eyes were swelling. I pulled out our epi pack and promptly gave her a good dose of Benedryl. I also gave Madelyn some since she shares the same allergy though she was not complaining (she is not as severe).

I was shaking like a leaf. After seeing her first reaction, which I described in my last post about this, I was worried it was happening again. Fortunately, the Benedryl did the trick and there was no need for the epi pen. My guess is just being around that much peanut butter set her off. It took an hour for my heart rate come down. We left the aquarium.

I sobbed in the car to my brother after the kids all fell asleep in the back. I was devastated. My already small and scary world just became even smaller. We were just starting to get comfortable with living with this allergy and once again I don’t want to leave the house with the girls. How can I send them to school? How can we visit anyone’s house? Clearly Alicia is very sensitive.

My question is whether it is reasonable to request that the Vancouver Aquarium, and places like it, consider being a peanut free zone? I know that a number of schools and churches have adopted such policies. This is, after all, a matter of life or death. Today I felt like going up to the peanut butter eating families and letting them know about our situation and ask them to reconsider their food choice when coming to such an environment where the experience for kids is tactile in nature. Is that reasonable? I know that I don’t have a right to tell people what they can and cannot feed their kids but what if they were in our shoes? Would they feel the same way? Wouldn’t they want to help us keep our kids and others with this life-threatening allergy safe?

I’ll sign this one off with a deflated sigh… why has this happened to us?

I will start at the beginning. This past July, we were enjoying supper at Corina’s place, when Alicia, one of my 2 yo twins, left the “kiddie” table and came up to us at the “big” table with hives appearing around her mouth. Before our eyes, the hives were spreading like wildfire. Having seen an anaphylactic episode myself, it was clear to me we were in trouble. I don’t think anyone else in the house quite realized the seriousness of what we were witnessing.

I shouted instructions to everyone in the house. “Joel, get the Benedryl out of the car (that I God-willing brought with us).” “Chris, get in our car, you’re taking us to the hospital.” “Corina, get a popsicle.”

Chris, my brother-in-law, Alicia, and I jumped in the mini van and drove like crazy to the emergency room. By the time we reached the hospital, Alicia’s airway was becoming compromised as she was starting to weeze and turn colour. Like a scene in a movie, I ran into the ER with her in my arms and screamed, “My daughter is in anaphylaxis!” Suddenly a swarm of nurses and a doctor grabbed her and went running. The quickly administered epinephrine and benedryl. The first dose was not enough, 20 minutes later, she needed another. The poor kid was jumping out of her skin and screaming like you’ve never heard a kid scream. Poor Chris, who at the time was suffering from ear-related issues, was trying to hold onto her whilst having her scream in his ear.

The most frightening part of all of this is that we had no idea what she ate to cause this. For dinner she had salmon, which she had eaten quite frequently before this happened. She had her first bite of a California roll, so we didn’t know if she was allergic to imitation crab meat, shell fish (from cross-contamination), sesame seeds, or ?????

We were referred to a pediatric allergist and waited seven long months for the appointment. In complete fear. If I could sum this experience and state of living up in one word, it is fear.

After scratch allergy tests for both of our twin girls. Surprisingly, the culprit looked to be peanuts or other nuts. Alicia was positive for peanuts and other nuts, Madelyn just for peanuts and much less severe than her sister. Because we didn’t know how peanuts or nuts would be in what she ate, our doc had us take it to the next step, a food challenge, to challenge salmon to see if the scratch test was innaccurate.

I had to purchase the salmon and cook it to bring to the hospital for the “food challenge”. For those of you unfamiliar with this procedure, you take a suspected food allergen that is not coming up positive in the scratch test, and have the child eat it in the hospital. The child eats small bits of the food at regular intervals and you sit and wait to see if they react. Quite honestly, it is one of THE most frightening things I have ever been part of. When I purchased the salmon to bring to the hospital, I sobbed in the grocery store. I wondered if what I purchased was going to kill my child. Once we were there, the room we were in had equipment to intubate her if necessary. Very intimidating. I knew we were in the best possible place to have something happen, but if you have ever seen your child turn blue once, you never want to see it again. Thankfully, she passed the challenge. We confirmed that salmon is ok.

Our next step is another appointment in a few months to have blood tests done on the girls. We didn’t opt to do it right away as they were so traumatized by the scratch test. This will give us a clearer picture of just how sensitive the girls are, and cover more potential allergens than we scratched for. Our son is also going to have scratch testing done since there is a 60% chance a sibling will have the same life threatening allergy.

What have we learned from all this so far? That people aren’t very understanding. That people have no idea how serious this actually is. That life is scary for us. That our world became much smaller after we found out. That knowledge is power. That you are truly your child’s only and best advocate. That sending our children into the regular school system could be too dangerous. How to use an epi pen. That we do have true friends that support us. How to read labels. How to cook from scratch. That I am a pit bull when it comes to watching out for my kids.

This lifestyle has changed our lives considerably. Socially, health-wise, and financially. It has put strain on relationships, it has limited where we can visit, it has limited our childrens’ choice for education, it is expensive to purchase nut-free products, and we are probably healthier because I have to cook most things from scratch.

I have learned a lot about coping and thriving with this situation. I will share as much as I learn with you as I continue blogging about this nut-free journey.

My first words of wisdom are these, buy an epi-jr pen. Even if you don’t think your kid has an allergy, you still never know. Just because your child didn’t react after a first exposure, doesn’t mean they won’t react. It is actually subsequent exposures that cause reaction. Also, what if a child visiting your home has a reaction? Administering epinephrine early enough can save a life. Make an epi-jr pen part of your home first-aid kit.You do not need a presciption to get one.  Also keep jr Benedryl in that kit as well. Know the symptoms of an anaphylactic reaction as they can vary (I’ll do a post on this next). Finally, be understanding of children that have a life-threatening allergy. Their parents are not trying to be pains in the butt or take away your “right” to feed your kid a peanut butter sandwich. They are protecting their children. Put yourself in their shoes, what would you do if you knew your child could die from such an exposure?