The post I've been dreading... Anaphylactic Shock

I have been putting off writing this blog entry for a couple of reasons.  One, it reminds me of the day my child almost died and how I failed as a mother. And two, It reminds me of how easily it could happen again.
It’s important to me, and if you have a child with food allergies, it will be important to you to read this post and understand what happens when your child goes into anaphylactic shock. Granted, this is just my story.  Allergic reactions can manifest in many different ways and at different times.
This is a detailed account of what happened that day.  Why is it so hard for me to write this? I made mistakes.  I should have done things differently and I didn’t.  I didn’t truly understand food allergy and reaction and I was complacent.  I blame myself for all of it.  And at the end of this terrible day, while I hated myself, I was so very grateful I was given another chance to do things right.   Maybe by sharing my story, you will have a better understanding of how quickly and suddenly an allergic reaction can happen.  How there isn’t any such thing as being over reactive or over-prepared when it comes to keeping our food allergy children safe.  Read that list of ingredients one more time.  Check your bag again to be sure you are carrying everything you need out the door.  Because, in the world of food allergies there’s little to no margin for error.  Here’s my story.
A warm Spring day.  Cade was 3.5 years old and we were enjoying one of our outings to a local farm and bakery. We liked to visit the baby cows, chickens and eat some of their delicious ginger snap cookies.  The bakery was out of Cade’s favorite cookies, so he asked for a muffin instead.  As a “food allergy mom” I carefully read the label. “Chocolate Chip Muffin” the ingredients listed were standard and all seemed safe. Two small bites into the muffin Cade turned to me and said his mouth was “hot and prickly” – this was a description he hadn’t used before so I calmly took him to the car and searched for my Benadryl.  I assumed that the muffin must have been contaminated and he was having a reaction.  We have had reactions before and a little measured cup of Benadryl always did the trick.  I searched for the Benadryl, dumping my purse on the car seat… nothing. How could I be so unprepared? Did I forget to replace the “one –dose” I carried around with me? I didn’t want to give him an Epi-Pen shot to the leg, it didn’t seem serious enough to warrant it.  But here we were ten minutes from any store.  I quickly put him in his seat and drove toward town.  As we were driving Cade started saying, “Mom, I’m having a really bad reaction!  You should have read the ingredients” (yes, my 3.5 year old uses those words). I reassured him that we were going to get to the store and get him his medicine and that I DID read the ingredients!  In the pharmacy, I sat him down and dosed him in the aisle.  Ok, I have everything under control. Everything will be just fine now.  What a relief.
We drove home (a short drive) and the medicine started to take effect.  Once home, he became sleepy and wanted to snuggle on my lap.  Sitting there I punished myself, swearing I would never be without Benadryl again.  A close call, narrowly avoided. Just as I thought I might close my eyes and fall asleep with my sweet, snuggly boy. He awoke and said, “I’m going to be sick!” He started to vomit.  I was trying to calm him down and thought, “This must just be his body rejecting whatever he ate”… “The Benadryl must be working”.  Still I reassured myself and him that everything was fine. 
This is the moment where I have to believe greater forces were at work in my life. Cade turned to me and in a voice so matter of fact, so assertive, said, “Take me to the hospital.” My three year old was telling me to take him to the hospital?  “Are you sure? Really?” Honestly, the request seemed so strange coming from this little child that I felt compelled to honor it.  I packed him into the car and started driving.  Along the way I called family to tell them what was going on, also saying how I thought maybe I was over-reacting by taking him to the hospital. I called his pediatrician. I thought that maybe it would be better to check in with them than to head into the ER with a small child.  The pediatrician’s office suggested I continue onto the ER given their busy schedule.
Driving down the road I kept the conversation going with Cade. Hearing his voice, making sure it was clear and he wasn’t having difficulty breathing.  Approximately, half of a mile away from the hospital, Cade said that he had a “clump in his belly and in his throat”.  I became increasingly concerned and started passing cars along the busy road.  Laying on the horn at the street light intersections, I felt my panic start to rise.   I was becoming more and more terrified, just needing to make it up the hill to the hospital. 
As I pulled into the parking lot, Cade was still talking to me although his voice began to sound hoarse.  I turned around one last time and told him that we were here and the hospital would take care of him. I hopped out the driver’s side and ran around the car to take him out of his seat (probably 10 seconds tops).  When I opened the door, his airway had sealed shut. He was going into anaphylactic shock. Barely breathing… looking at me in fear. I can’t exactly say what my emotions were in that moment.  Only drive… drive to pick him up and run with him in my arms across the parking lot into the doors of the emergency room. There wasn’t room for fear, sadness or blame.  That came afterward.
Through the doors of the emergency room I ran up to the window and uttered the word, “allergy”.  At the call of the woman behind the window, it was as if a swat team of nurses descended upon us.  I continued to carry him through the building directed to a bed.  He was given an oxygen mask with a steroid, I believe.  I laid on the bed with him on top of me.  He was completely unconscious.  I felt like it was the least I could do as his mom… to hold him and let him know that I was right there.  How I wanted him to wake up – to open his eyes.  The doctor entered and examined him.  I felt so helpless.  I wanted to yell at the doctors.  For what, I’m not sure.  I wanted this to be someone else’s fault.  The steroid worked enough to keep him breathing and quiet.
They wrapped him in warm blankets and even though I was losing the feeling in both of my arms, I kept holding onto him.  Time was hard to keep track of in these moments of fear and frustration, but I believe twenty minutes had gone by when he started to stir.  I thought he might be warm under the blankets, so I removed them slowly.  Underneath the blankets I found his body was covered in hives. Hives like I had never seen before.  In fact, they all massed together and created one swollen child.  So swollen that the hospital bracelet they had put on him was tight.  They spread across his entire body so quickly.  Every inch of him was covered. Between his toes to his eyelids… the largest of the hives concentrated in his warm areas; groin, underarms, behind the knees, around his neck.  Some looked like blisters.  My son was unrecognizable. 
As if seeing him unable to breathe were not enough, the visual before me confirmed it all. A flood of emotions came over me.  I did this.  I was supposed to protect him.  This happened because I wasn’t careful enough.  I was complacent.  I recalled the last visit with our allergist, where I told him I wasn’t sure if Cade’s allergies were really all that serious.  We had never had a serious reaction and we also hadn’t been overly careful.  We ate at the bakeries were there was a chance of cross contamination and I thought that was ok. I never thought of myself as an over-reactive parent.   And look where this landed me.  My child almost died.  And why didn’t I think to give him his Epi-Pen? Why did I wait until the very last second?  Why did I risk my child’s life? 
At the sight of the hives, the doctor injected Cade with Epinephrine into the skin of his stomach. Cade had no idea it was even happening. They followed with two more injections of steroids into an IV in his arm.
“We’re waiting for the second wave” the doctor told me. When an individual has an allergic reaction, there can often be a second wave, a second reaction. 
Fortunately there was no second wave just a child, tired and confused by what had happened to him.  I realized why I didn’t give him the Epi-pen when I should have.  I was in denial.  I didn’t want to believe that our lives were at such great risk because of food.  That’s right… what amounted to milligrams of what we later discovered was a mislabeled “walnut chocolate chip muffin” my son could have died.
Within a couple of hours we left the hospital as if nothing had happened.  No hives, no swelling, breathing normally and all he had to show for all it was a Band-Aid where the IV was.  I left with so much more.  I left with awareness and a fear that no doctor could instill in me.  I left with a diligence to be prepared and to protect my son at all costs.  And hopefully, my story never becomes yours.  Be proactive, preventative and don’t take chances.  Share my story and your own to spread the word and raise awareness about the seriousness of food allergies in children.  They’re counting on us.
 
All original content copyright Kira K. Guidon, 2013.
 

 

They're going to give my child something that could kill him...

I can't believe I'm doing this.  It goes against everything I have been doing for the past four years.  Ever since his first allergic reaction, my priority in life has been to keep him safe from peanuts and tree nuts.  Here we are sitting in this room and they're telling me that they are going to give him peanut flour.  What kind of a mother am I?

I know what kind of a mother I am.  I love my son more than life itself.  There isn't anything in this world I wouldn't do for him.  So when I'm faced with the daily danger and threat of accidental ingestion, I'm determined to find a treatment... but at what cost?

The Plan: Day 1 - Our first visit to the clinic.  A relatively quick introduction.  Kind, warm nurses and staff that greet us and calm my fears with their presence.  I'm reciting all my questions in my head over and over.   They're written on a piece of paper in my purse, but surely, there's something I have forgotten.  In comes the doctor.  He's an older man who instantly is kind and funny toward my son and makes him laugh out loud.  I can see my son relax and feel at home in this rather sterile clinic room... but as I watch the doctor interact with my son, I too become relaxed and I finally have the feeling that we are in good hands. I hit him with all my questions.  His answers are immediate and concise.  This guy knows what he's doing.  I tell him all my concerns, and there's plenty. Can we stop at any time without reaction? Yes.  Can I give him Benedryl if he needs it without effecting his treatment? Yes.  Does this put him at higher risk for reaction? No. His answers puts me at ease.  So we start the treatment. 

A small dosage starting at a fraction of a milligram of peanut flour was mixed with water to dilute and then added to my son's choice of food vehicle (this time blue Gogurt).  He eats the three or so spoonfuls and she scrapes the edges of the cup in an attempt to get all of the peanut flour.  He's eating the entire time - snacking on goldfish and pretzels.  The consumption of carbohydrates is key to keeping his stomach settled during the ingestion of the peanut flour.  Every half hour they double the dose.

At 1.5mgs he starts to complain that there is a "clump" in this throat.  My heart sinks... we're only half way to the initial goal line and already a clump?  He's instructed to take several sips of water and the "clump" is gone.  Ok, I'm settling back in now.  The trickiest part of this treatment may be keeping a five year old boy sitting still for our 6 hour visit.  Keeping his activity low is key to avoiding a reaction.  As the day progresses we start to feel like part of the family of this clinic. 

Besides the obvious intention of seeking treatment for my son, something else happened that I did not expect.  I met mothers just like me.  Mothers who interrogate their children if they hear a slight clearing of the throat or spot a red hive on the skin.  "Is that a hive?  Is your throat scratchy?" I was brought to tears by the support offered by other mothers returning to the clinic.  And for a little while I was able to talk with them about what it is like to be us. 

Back in our room the doses kept on coming with no reaction.  I felt hopeful and most importantly, in good hands.  By the end of the day he ingested a single dose of 6 mg and a cumulative dose of 12 mg (equivalent to 1/10 of a peanut) without reaction.  Success!

The following day, we entered the clinic like veterans only to get hit with a dose (no pun intended) of reality when his body rejected the maximum amount he consumed the day prior.  We were visiting with new friends who were occupying the room next to us.  Our boys, the same age had just started a game Candy Land when my son vomited. My instant reaction was to apologize and get him out of the room as quickly as possible.  To my surprise, my new friend was comforting and accepting.  She reassured me that this had happened to her son too and there was no reason to leave if he didn't want to.  We settled back in to the game and our conversations, learning along the way that there were so many others out there that share a life similar to ours.

As a result of rejecting the peanut flour on day 2, he was lowered to a 3mg dosage for the first two weeks.  This will be a slow process but clearly one worth the time and energy involved.  Our goal is to gradually build his immunity to the peanuts (up to 394mg).  And so the journey continues.

How it all began...

How did you find out? That’s often the first question I’m asked when I talk about my son’s food allergy.  The question conjures anxiety just at the thought of dangers that we face daily.  He’s severely allergic to peanuts and tree nuts and mildly allergic to eggs. 

To recall the day when he had his first allergic reaction and to know that it was at my hand, is sometimes difficult and altogether surreal.  Mostly because up until this day I was your typical mother and he was a totally textbook child. 

So here's how it happened: Sitting at the table eating breakfast, I broke a small piece of my toast and fed it to my nine month old son.  Almost instantly he started to scratch at his face.  Around his mouth and his cheeks along with his neck became red and swollen.   I was shocked.  Completely shocked.  What was happening?  Was he choking?  I grabbed him and quickly realized he wasn’t choking but having a reaction to the food I had given him.  I called the doctor’s office.  They instructed me to give him Benedryl and that he should be fine given that he wasn’t having difficulty breathing.  As a new mother, I didn’t have Benedryl on hand.  So in my pajamas and in a frantic state, I drove the drug store and dosed him right there.  We were lucky… incredibly lucky.  The reaction to the maybe 2cm piece of toast was not anaphylactic.  We followed up with an allergist to learn that he was severely allergic to peanuts and tree nuts.  The toast was an oat/nut toast I had been eating for years.  It never occurred to me that my child would be one of those kids I had heard of with these “deadly reactions to every day foods”.  At that moment, our lives changed forever.

Fast forward to today.  My son turned 5 years old yesterday.  We have had some very close calls with accidental ingestion.   Along the way, we have seen five allergists.  All of which have told us that our only option is to avoid these foods.  We are careful but there are accidents.  He’s a child.  It can happen.  And I’m not satisfied with doing nothing. Why did they look at me like I was crazy when I would ask for treatment options?

Not long ago I told my son that I would try my very best to fix his allergies. He cried and laughed at the same time.  It was an incredibly powerful moment for the two of us.  Strangely I had only really considered how much his allergy affected me.  I was the one to read the ingredients.  I was responsible for keeping him safe.  If he had a reaction I blamed myself - I wasn't careful enough... how could I have missed that?   For as long as he can remember, this has been his lifestyle.  But when I saw the emotion coming from him in such a complicated mix of hope, relief and sadness, I knew that I had to do this for him. 

Today marks the sixth day of our Oral Immunotherapy Treatment.  We’re doing great.  Please join me on our journey to peanut desensitization.  We have a long way to go but we’re hopeful and want to reach more people effected by severe food allergies with this amazing breakthrough.

Here's a link to center we are using here in New England: nefoodallergy.org