The Day After Anaphylaxis

I can’t claim to know what it is like in other homes the day after anaphylaxis. But this is a snippet of what it is like in my home.

The day after an emergency run to the hospital is a strange day because it is such a contrast to the moment a food emergency is happening. When you are facing a severe food allergy reaction, everything happens fast – and must. You must inject epinephrine. You must get 911 on the line. You must get the ER. You must keep a close eye on any emerging or continuing symptoms of anaphylaxis. You can’t forget to record the time everything started happening.  You must keep a second auto-injector nearby.  Everyone’s adrenaline is pumping. And in all this, you must remain calm and focused. There is no time for doubt or waiting around.

Once our son was on his way to the hospital, the exposure needed to be completely cleaned up. In this case, that meant cleaning every surface in our kitchen, completely cleaning two refrigerators, washing pot holders and linens at the sink, and packing up and moving out a whole bunch of cross contaminated vegetables. We did all this after getting home from the ER, which meant it was a very late night for the parents in our house. We also continued to check on our son to make sure that he was staying stable and give him meds throughout the night.  Sleep did not come easily.

By contrast, the day after anaphylaxis at our home moves slowly. It is a strange day – a day in which we are all acutely aware that live an almost normal life. Eating is hard for all us. We look at food and wonder: what will this do to the one we love?  (more…)

What difference does a nose make?

We brought Tracy home in June after spending two weeks in Colorado Springs learning how to work with her.  Bringing home a service dog is in some ways similar to bringing home a new infant.  Everyone’s excited, overjoyed.  Tracy was a long-awaited and prayed-for new member of our family.  We had to adjust our routines to incorporate Tracy’s needs. Benjamin had to learn to embrace a new level of responsibility. We all needed to learn about each other.   It was an important time for all of us.   As can happen in transition times, not everything went smoothly at first.  Tracy immediately began to experience some health issues.   Her transition away from Colorado was more difficult for her because she didn’t feel good.  Happily, she is well now and fully embracing her new home.  She is obviously deeply devoted to her new boy.

Even from early on, though, the answer for our family is:  Yes, her nose makes a difference.  Tracy’s ability to search out trace amounts of allergens makes a difference for our son.  As soon as we brought Tracy home, we went on a family vacation to Yellowstone National Park.  This is the kind of vacation that takes careful planning on our part because of the great distances from medical facilities in remote areas, limited access to safe food,  and heavy dependence on nut products for summer snacking.

To make it work, we rented a cabin with a kitchen and planned to cook from scratch. We always carry a number of epi pens with us in the event of an emergency.  We located places where we could purchase fresh ingredients.

When we pulled up to the cabin in West Yellowstone, my mother waved us back and announced that there were peanuts strewn all over the front porch. (The owner knew of the allergy and had cleaned the inside, but the previous guests must have eaten nuts on the porch just before they left.)  Tracy had been with us 7 days.  Mom and I worked to clean up the porch. When we were done Joel asked Tracy to search the porch. She alerted to the door knob, door mat, and an arm of the chair. I cleaned those areas again. Joel asked her to check the area again. She cleared the door knob and the mat. She alerted again at the chair. As I got down to clean again, I noticed two small peanuts that were under the chair between the wall and cement.  I cleaned those up, wiped it down a third time, and asked Tracy to search it again. She cleared it.  Joel walked her through the house, and she never alerted to anything in the house.

Benjamin sat on the front porch often during that entire week, and never once had even a small reaction.  That might not sound like much, but to us it was amazing.  Tracy’s collar says, “I save Benjamin’s life.”  Did she save his life? I don’t honestly know if that can be measured.  Anaphylaxis works in wily, hard-to-predict ways. That, of course , is why it can be so scary. In one situation it is upon fast and furious. And in another similar situation it isn’t.  What I can say for sure, though, is that my son was relaxed, having fun, and not worried.  He never even had a small reaction. Nothing. That, I can say, was a first for him.

We are extremely grateful to Kathlyn Ross, Tracy’s trainer, for the time and care she poured into Tracy. We are grateful to Tracy’s puppy raisers for the loving environments they provided for Tracy as a puppy.  Her nose makes a difference for our family, for our son. We are grateful.

Anaphylaxis in Rome (part 2 of 2)

After one bite of the cashew-contaminated pasta sauce at our table in Rome in Summer 2010, Benjamin’s eyes were wide when he told us something was wrong. Joel and I both saw the look. The tsunami of emotions hit me again.  This time the symptoms were moving fast. Faster even than the second grade anaphylactic episode.

Hayley writes about the speed with which we recognized anaphylaxis, gave an epi pen, and got to the hospital. My own memory is that it felt like everything was moving in slow motion:  Watching the symptoms roll in, one after another. Throat closing, vomiting, hiving…  Joel holding Benjamin while I gave him the epi pen. My talking him through the whole event.  “I have to give you your epi now.  You are going to be fine. Let’s count together, 1,2,3,4…10”  “You are so brave.  We are going to take care of you.”  Joel grabbing all of the food bags and shoving them in a bag, lifting Benjamin up, and heading out the door. Me, checking in briefly with the law students that had come for dinner, and promising Natalie that we will take care of Benjamin.  Carrying Benjamin down the rampa (think of a LONG slow series of wide steps). Getting to the street, around the corner to the main road, and waving frantically to the first passing cab. He passed – and left us standing on the sidewalk. Joel keeping a constant eye on his watch.  The next cab coming by fast and me frantically waving again. Being passed by once more.  An Italian couple with a baby looking our way with puzzlement on their faces.  A third cab coming. This time I ran in the street waving and doing my best Italian dramatic beg. “Please, please, mi bambino, hospitale, anafalactico shock!!!” He stopped. He nodded. We climbed in. He took off fast. We later found out he wasn’t even on duty, just an angel along the way who helped us.

In the cab, talking to Benjamin. “Are you feeling okay? How is your throat?  We are almost there.” Holding Joel’s hand from the front seat of the cab to the backseat where he was still holding Benjamin.  Getting to the ER. Rushing in and trying to communicate in English and Italian with the triage nurses. Their confusion. Handing them the emergency sheet where we had listed his condition in Italian had had it translated, and having them read it and then immediately start to take Benjamin’s blood pressure – but still not moving with enough urgency. The next angel of the night walking up from the rows of people sitting in the waiting room and starting to talk to the triage nurses in Italian, and then to us in English.  Whatever she said, we were back with a doctor within seconds.  “I had a little English in my school,” she said.  Bless her.  I will always love this woman whose name I don’t even know.

More shots for Benjamin.  A young female doctor carefully reading a medical manual on food allergy protocol.  She looked carefully through the food items that we had gathered and brought with us. She found the cashew in the Romano sauce.  Another doctor coming in and listening to his blood pressure. Two doctors agreeing that he needed to spend the night.  Benjamin tucked into a bed with a small chair beside him in a room of about 10 beds. The nurse pulling the curtains around our bed. All of us working hard to cross the language barrier and fill out the necessary forms. Joel leaving the hospital and heading back to Natalie late at night. Sitting beside Benjamin through the long hours of the night, praying, exhausted, scared, and cold for the first time since I had been in Italy. Really cold. I asked for a blanket as best as I could. Someone came and tucked one around Benjamin.  Waiting. Waiting. Waiting.

It was in Rome that Benjamin really learned that life was fragile.  He knows now how quickly anaphylaxis can steal him from us. I can’t protect him from that knowledge anymore.  He felt it. He knows.  He chooses to live with grace and courage. He doesn’t take unnecessary risks with food, for which we are extremely grateful, even though he sometimes is in situations where other people don’t understand how medically fragile he can be might still introduce risks around him.  Do I regret going to Rome?  I don’t know. I don’t think so.  Benjamin doesn’t regret going to Rome.  Even after this happened in Rome, we talked honestly about leaving early – and he considered it but chose to stay.  I think it is really important to live a full life as best as you can.  We hope Tracy will be able to help Benjamin continue to live fully as he begins to learn to be more and more independent.

Anaphylaxis in Rome (part 1 of 2)

These posts are hard to write.  In many ways, it forces me to relive moments that are very frightening and difficult.  It also forces me face the reality that these moments might happen in the future at any time.  We never know the situation, hour, or moment.  Anaphylaxis can happen to him and changes everything in the blink of an eye.  We work hard to never have an anaphylactic moment.  But the reality is I can’t fully protect my son from that as hard as I try. He must live a full life and I want him too!

Before even agreeing to go to Rome in Summer 2010, Joel and I had “the talk.”  Do we go or do we stay? What is the worst case scenario? We both agreed our worst case scenario is that Benjamin might go into anaphylaxis.  Could we take extra precautions and try to prevent that or is it best to stay at home?  We want our son to live fully.  He loves history, cultural experiences, and travel. Could we deny him the chance to try? We reasoned: if we don’t travel, how will he know how to travel when he is grown?  We would have to work really hard to make it work. We could do that. 

So, here is a short list of things we decided to do. We worked with the university to create a list of every nut in Italian. We wrote a summary explaining his allergy to restaurants and food workers and a friend at the university translated it into Italian.  We wrote a one-page summary about his condition, immediate medical needs, and other vital information (blood type, etc.) for emergency workers and doctors and had it translated into Italian. (We carried that with us 100% of the time.)  We brought extra epi pens and Benadryl  and had prescriptions written by our doctor for all them to get them through customs. I started studying traditional Italian cookbooks. I made a list of dishes that I noticed were using nuts. I read travel memoirs and blogs of Americans living in Italy so that I had more information about rhythm of life in Italy. I’m glad I did, too! I found out valuable information – and had fun reading and learning about Italy.

We chose an apartment near to the children’s hospital.  We notified everyone. Participants in the academic program where Joel taught, airlines, restaurants we were scheduled to eat at, and catering services.  I planned to mostly cook from scratch in our apartment.

We worked hard to eliminate risk.

But it’s hard to be 100% right.  And we missed one.  I missed the danger.  I can still feel the lump in my throat and the hot tears in my eyes just writing it now. I missed it.  It was plain jar of red tomato sauce at the grocery store.  I read the label. I consulted my list and I did not recognize the word they listed for cashew, which was embedded in the middle of the list of ingredients. In all of my research I’d never run across a recipe for a tomato sauce (a Romano sauce) that called for ground cashew.

We had spent an unforgettable morning that day at a nearly empty Coliseum. We got up very early to take the kids. Our plan was to get across Rome early in the morning and be one of the first to stand in the long line. We already had our tickets.  It worked. We watched the sunrise from inside the Coliseum.  It was glorious. We took our time looking through the gladiator exhibit.  We left and walked down the main street in ancient Rome.  We wondered if the apostle Paul had walked where we were walking.  It was hot, dusty, but magnificent at the same time.

We left and made the long journey back across Rome to have lunch at home. It was hot, miserably hot.  We had invited some law students over for dinner and the kids wanted to have an easy pasta dish.  So, we stopped in the mart on the way home and bought the supplies.

At dinner time, the girls came over. We prayed and started eating and chatting about our day.  Benjamin helped himself to pasta and took a bite. One bite was all he had.  And then he said, “Dad, my throat.”  [to be continued]

Bread

Oh, how my family loves fresh bread. It is has been a part of the rhythm of my life as far as memory goes back.   Bread is central to my faith. Jesus is the bread of life. We eat bread together in my faith community as an act of remembrance.  We celebrate holidays with special family bread recipes. I have always made homemade bread on occasion. And we eat sandwiches every day. Benjamin in particular must take his own lunch every day to school and often to other events.  Bread is a staple.

But bread is now complicated. For a long time, there were plenty of choices in the stores for me to buy bread that my family would eat. Then we started to notice the warning labels increasingly on multiple brands of bread under the ingredient list: Warning: May contain traces of peanuts or tree nuts. OR  Warning: This bread is made a facility that uses peanuts and tree nuts.  Over and over again we began to see our choices dwindle to one or two. There was definitely a quality difference in what we could safely eat. The kids put their collective feet down and declared one brand off the list. I sighed. I understood. Bad bread is not really the same. I started working hard to make homemade bread again.

But, as I recently explained to a colleague of mine at work, it is really hard to be Ma in Little House on the Prairie in 2012 Minnesota. Work demands, car pool demands, and the pace of life began to make homemade bread making difficult.

We were down to really one choice of bread. Then, Costco quit carrying the line. (Please, Costco, bring it back!)  Joel and I shed quiet tears and then focused on staying positive and finding the creative solution.  Homemade bread it would have to be. We could share the bread making responsibilities as a family. And we found a wonderful book: Artisan Bread in 5 Minutes A Day.  It works! It is good. The children love it.

We appreciate our bread. We are so grateful to have our bread. Our home smells heavenly.  A food allergy is a journey.  You never know what is around the bend. It takes a lot of work to manage. But, blessings float back to you in ways that you would never expect.  Sunday nights I am laughing with my husband in the kitchen mixing bread and Monday morning I am slicing homemade bread and making sandwiches for my two children.

The Phone Call Every Allergic Parent Dreads

It came in second grade. It was a typical sunny California day.  I dropped Benjamin off at his school as I drove to my meeting at work.  Joel dropped Natalie off at her school as he drove out to Pepperdine, 30 minutes away.

In the middle of my meeting, my cell phone went off.   I noticed right away that it was the school’s number.  I excused myself, went to the hallway, and answered the phone.

The call began. “Hi, this is Connie. Benjamin is in my office complaining of a peanut emergency. I’m not sure whether to give him an epi pen or not.”  Emotions hit with the force of  a tsunami.

Inside myself it sounded and felt something like this: Be calm and think clearly. Go! Now!  Breathe.  Get to him! Go! Now!  Pray! I started praying, “Dear God, let him live. Let him live. Please let him live.”

I looked up and realized that I needed to respond the group of people at my work staring at me.  I don’t even know what I said or if I was coherent. I vaguely remember saying the words “peanut emergency” and people asking me what they could do to help. All I could think was I have to go! Now!

With sinking fear inside I wondered, “WHY ARE YOU CALLING ME, SCHOOL! We have a plan. A clear plan. An easy plan. It goes like this: In An Emergency: 1. Give Epi Pen 2. Call 911  3.Call Parents.”

Fortunately, my work was about 2 blocks from Benjamin’s school. I drove there. I walked in the door and saw “the look.”  He was itching severely all over although there were no hives. He was pale. He was clearing his throat. His eye started swelling as I walked in. AND STILL IT WAS HARD FOR ME TO PULL THE TRIGGER ON THE EPI PEN. I knew to give it and it was still hard. I gave him an epi pen and carried him to my car and drove 3 more blocks to the hospital Emergency Room. We went to triage, and waited for nearly 6 hours there. They observed him and administered more steroid medication when the epinephrine’s effects started to fade.

One reason that the school did not follow the emergency plan was because Benjamin had not had any food to eat at school.  It was before lunch and before snack time. Benjamin had begun to feel his body change during a transition from the gym area where there were other children eating snack food and candy.  He met his teacher at the door and said, “I am having a peanut emergency.”  She sent him directly to the office.  We don’t know what triggered anaphylaxis that day.  We do know it was a residue reaction.  Benjamin came into contact with some sort of nut residue somewhere, left unknowingly by someone.  He scratched his eye, mouth, or nose and that was all it took.  That’s all it took for the onset of anaphylaxis for him.

“Your Son is a Category VI”

In fourth grade, we went to a well-respected research clinic at the University of Minnesota. Our doctor was a pediatric allergist and immunologist.  He listened and carefully reviewed all of our son’s medical files.  He ordered a round of testing and we made an appointment to meet with him again to review the testing.

Before the second appointment, I received a report in the mail. The top of the report said something like this: These show abnormal results. Please consult your doctor immediately.  Even with a known life-threatening allergy these words can fill a parent with dread.

We sat in the office on the day of our appointment and the doctor said this: Your son has a category 6 allergy to peanuts.  Well, actually, his response was so strong we rated him a Category 6 plus. Our test at this time is not sophisticated enough to accurately measure the immune response in this test.  In laymen’s terms, he blew the test. Currently, we don’t have a test sensitive enough to measure his immune response.  Stunned would be a good word to describe the feeling of hearing news like this.  And we already knew he had a life-threatening allergy.

A pediatrician and mother of severely food allergic children wrote a thoughtful and informative piece where she explains the science of anaphylaxis.   She explains how anaphylaxis can come on as sudden as a summer storm.  You can read about it here. Here is more from an interview with Dr. Mary Tobin, a specialist in allergy and immunology in Chicago’s Rush Univ. Medical Center, about a Category VI diagnosis.

A category six diagnosis feels like you just moved into tornado alley. And the weather forecaster is predicting an unusually long tornado season with  high potential for tornados.

The diagnosis

I am often asked how we found out Benjamin had a peanut allergy.  Shortly after Benjamin turned one, I took him to the pediatrician for his routine one year old visit. We chatted about all the routine one year old milestones.  I asked her at that time how I should go about adding new foods to his diet.  She told me to add whatever I wanted to add, but to only do one new food every couple of days.

So, I started adding in new foods.  We gave him cantaloupe. He loved it.  I waited a couple of days and gave him a bite of my peanut butter sandwich.  He ate it. He looked a little pale to me but nothing else seemed wrong. So, the next day, I gave him another bite of peanut butter sandwich. The reaction was immediate.  He went very red in his face, then he went very, very pale.  Next, huge hives broke out on his neck and around his mouth and continued down his chest. I didn’t wait for more. I was home alone and terrified by the look on my baby’s face.

I ran to cabinet and gave him Benadryl.  I called my doctor. She instructed me to come directly to her office unless I thought he wasn’t breathing and then to do directly to the ER.  It was the worst drive of my life.

I did not know symptoms of anaphylaxis at the time. I did not know the word anaphylaxis existed. I did not know to go directly to the ER and fast. I did not know Benadryl was not an effective treatment for anaphylaxis. I had never seen an Epi pen.

My doctor treated Benjamin in her office. We stayed at her office a long time. She impressed on me that day over and over and over again to always state that Benjamin has a life-threatening allergy to peanuts. She told me to never leave him without telling people he has a life-threatening allergy to peanuts. She made me promise to never write on any form he has a peanut allergy. I had to write he has a “life-threatening allergy to peanuts.”  I left with an Epi Junior and had practiced how to use it. I left with a sheet of paper listing CATEGORIES of food he could never eat. It started like this:  High Risk Food–bakeries, ice cream shops, candy, any ethnic food. It went on and on. I had a crash course in reading labels. I was told to be careful about him ever eating a food that declared natural flavoring as an ingredient.  She told me to be careful about being around cooked nuts since that could trigger an allergic reaction. This was 2000.  She told me that commercially produced peanut oil was fine for Benjamin to eat. He could never, ever eat cold-pressed peanut oil and to ask at every place what kind of oil they used.  The information about peanut oil turned out to be incorrect for Benjamin. But, we were given the best information at that time.

I begged for a safe food list. She told me there would never, ever be a “safe” food list. Ever. She told me that companies change how they manufacture food and peanut proteins were sticky and often picked up by food not containing nuts in the ingredients through the process of food production. She told me this was called cross-contamination. She told me to never let Benjamin eat a plain M&M. Ever. She told me to be careful at buffets, church pot lucks, restaurants. She told me to join the Food  Allergy and Anaphylaxis Network (FAAN).

I left her office. I was overwhelmed.  I was terrified. I shared all of this with Joel. We cried for three days. I discovered in my circle of close friends that there wasn’t a lot of understanding or sympathy or help. This was shaping up to be a private journey (or at that time a nightmare.)

We prayed. We took a deep breath. We joined FAAN. We decided that there was a lot of wisdom to living one day at a time. Twelve years down the road I am deeply grateful that my pediatrician understood the gravity of a food allergy. Twelve years down the road I still pray. We still live one day at time.