We Have a Plan and We’re Not Afraid to Use It…Not Anymore, Anyway.

In our 5 years of dealing with food allergies, my husband and I have trained a LOT of people on how to follow our action plan and how to give the Epipen or Auvi-Q.  We have trained friends, family, babysitters, teachers, sunday school teachers, Nursery workers, neighbors, etc.  This usually consists of talking through possible symptoms, when to give it, and a demonstration using the trainer device.  One time it also consisted of me using the real Epipen on myself, thinking it was the trainer.  It was all my husband’s fault, but you probably knew that.  Most people ask the same question.  “Have you ever had to use it?”  I hate this question, only because I hate my answer.

Our answer was that we had never used it, but we should have.  There have been a couple of incidents where we just failed to do the right thing.  In one case, we were so close to the hospital that we drove there, Epipen in hand and they gave it to her when we got there.  This horrifies me now, knowing what a huge risk we took for no reason.  Another time we drove to the ER and sat outside waiting to see if Benedryl would take care of the vomiting and hives.  Again, not the right choice.  Yes, we were very lucky and everything turned out fine, but I never want to depend on luck when my child’s life is at stake.

This past weekend, however, our answer changed forever.  After 5 years of coaching others on how to follow our action plan, we finally followed it correctly ourselves.  It took everything in me not to let the hesitation take over, but this time, everything in me was enough.

Here is our story:

Our two older girls were visiting their grandparents for the weekend.  Our oldest is allergic to eggs, dairy, peanuts, and tree nuts.  Our 18 month old son stayed with us and he is allergic to dairy only, per his allergy testing one year ago, which included the top 8 allergens and several seeds.  We struggle with how to give our children their siblings allergens safely, so he has not had much opportunity to have nuts or eggs.  I decided to take this opportunity to fix that.

After I dropped off his sisters on Thursday, I took little brother out for lunch and got him a peanut butter and jelly sandwich.  His FIRST peanut butter and jelly sandwich ever.  Since he had been tested for peanut allergies already, I wasn’t really worried about a reaction.  He ate about half of his sandwich and was perfectly fine, so we headed home.  Successful peanut exposure…check.

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On Saturday morning, we decided to take him out to breakfast, which is something we almost never do.  We took him to a restaurant we trust and we spoke with the manager about his dairy allergy.  We wanted him to have eggs, so the manager told us they could use a clean pan instead of the flat top and just use shell eggs, without the usual liquid egg mixture mixed in.  They would use no butter and no seasoning.  We also ordered him bacon and fruit.  the bacon was to be cooked in a dedicated section of the flat top that only cooks meat and the fruit was cut in the prep kitchen, which handles no proteins.  Yes, it’s a lot of precautions, but you’re about to find out why it matters so much.

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When he took his first bite of egg, he spat it out and threw it across the table, then he scraped at his tongue with his hands.  This is actually not an uncommon reaction for him when trying any new food for the first time, so, though a bit embarrassed at his lack of table manners, we were not concerned.  Then he took a tiny bite of bacon.  A few seconds later he looked like he was choking, with small gags and big eyes.  I made sure his mouth was clear and he stopped, then started again.  I could hear his voice, so I knew his airway wasn’t completely blocked.  Then he vomited.  Still thinking it was a choking episode that caused him to vomit, I took him outside for some air.  As soon as I got him outside and looked at him, I knew he hadn’t been choking.  His eyes were quickly swelling and he had hives on his face.  I ran back in with him, and told my husband we had to leave now.  The server was at the table so she gave him the check and he just laid down cash and bolted.

In the parking lot, we began our usual, “should we?”, but quickly knew there were no questions to ask.  WE SHOULD!  We strapped him into the carseat to keep him still and I climbed in the backseat beside him.  My husband held his leg and I gave him the injection.  Then my husband called 911 and requested an ambulance while I got him out of his seat.  He stopped crying right away and his face returned to normal very quickly.

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This is after the Auvi-Q injection while waiting for the ambulance. Facial swelling and hives are already returning to normal. I have no before picture for comparison, but take my word for it.

By the time the ambulance arrived, he looked like himself.  In fact, he smiled and waved at the ambulance as they pulled in.  We climbed in the back and they took us to the hospital after a quick evaluation.  On the way to the hospital, he started getting panicky and scratching his arms and legs ferociously until they bled.  The paramedic gave him a shot of Benedryl, which helped give him some relief.  He got a dose of steroids at the hospital and a prescription to continue them for a few days.  After a couple of hours of observation, we went home.

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Quick power nap at the hospital after the Benedryl kicked in.

Even though this was the first time we have ever given epinephrine, it was by far the least scary experience we have had around a reaction.  As soon as we gave the injection and saw his symptoms fade, I knew we had FINALLY handled it the right way and he would be ok.  I knew that if he needed another one, I could do it.  I knew, without a doubt, that this reaction would not be taking our baby from us.

Now we have to figure out if he has developed an allergy to eggs or if his food did have some kind of contact with dairy.  Another round of allergy testing in in his near future and we will have our answer.   The only thing I know for sure is that no matter what the results are, we can handle it.  We have a plan and we’re not afraid to use it!

Do You Think Your Child Is Safe At School?

You might have heard the buzz about new legislation for stocking epinephrine in schools.  As the mother of two allergic children and one non-allergic child, I am very passionate about this legislation.  You might think it’s because I want to take every precaution to keep my allergic children safe at school.  Nope….not about them at all (for me, anyway).  I want it for my non-allergic child, and you should too.

According to the recent Yahoo News article, States Enact Laws To Stock Epinephrine at Schools, by Lucas L. Johnson II , one quarter of all anaphylactic reactions that occur at school happen to a child with no known allergies.  Just let that sink in for a minute.  Twenty five percent of life threatening reactions in school happen to a child like your non-allergic son or daughter.  I don’t like those odds one bit, considering my non-allergic daughter does not have an epinephrine prescription.  In fact, she is the only one of my children who I know will not have epinephrine accessible to her unless she is with her siblings.  It is for her that I want this life saving medication stocked in her school.

Olivia has been tested for the top 8 food allergens and her results indicated that she is not allergic to any of them.  She has no known food or other allergies up to this point.  I know though, that she could develop an allergy at any time.  I also know that things she has never been tested for could cause a life threatening reaction, such as ant bites, wasp stings, etc.  If Olivia suffers a reaction at school, she will not have access to epinephrine because we live in North Carolina.  North Carolina is neither one of the four states that requires stocking of epinephrine, nor is it one of the 23 others that ALLOWS stocking of epinephrine.

Basically, the children with known food allergies who bring their own prescribed epinephrine to school are the only ones who will receive life saving medication in our state.  Even if another child has epinephrine on site, it will not be used on your child during an unexpected reaction.  Your child would not be treated in order to prevent their death.  They would have to wait for emergency assistance to bring the medication, which could easily arrive too late.  If you don’t care about the stock epinephrine bills because your child doesn’t have a known allergy, you might want to rethink your position.

My daughter who has severe food allergies never leaves home without at least 2 epipens.  She will always have them if she needs them.  This legislation is not for her.  This legislation is for my non-allergic child, and it’s for your non-allergic child.  Do you really want to bank on the chance that help will arrive in time?

Check the map above or this list to see if your state is one of 27 that allows or requires stocking of epinephrine in schools.  If not, the next time you see an opportunity to support legislation for stocking epi, don’t ignore it.  It just might save the life of a child you love, including your own.

I would love to see your thoughts on the issue in the comments below.  Does anyone think epinephrine should NOT be stocked in schools?