Italy (Guest post by Hayley Astrup)

I met Benjamin while studying abroad in Rome, Italy, in the summer of 2010. Benjamin’s dad was one of our professors, so the whole family took the opportunity to spend the summer in that wonderful city. The first weekend we were there, the whole group traveled across the country for a weekend. My two roommates and I got placed on the “teacher bus” (as opposed to the bus with the rest of the students), where we began getting to know the professors and their families better than normally possible.

As the summer went on, us three girls spent a lot of time with Benjamin’s family, whether on the forty-five-minute walks to school in blistering heat, on walking tours of the city, and even running into each other during weekend vacations to other Italian cities.

Precautions were constantly being taken to make the environment safe for Benjamin. After dealing with his allergies for a decade, Mom and Dad clearly had a system: they had his doctor’s notes in Italian for eating in restaurants, an Italian translation of ingredients to watch for when grocery shopping, and knowledge that McDonald’s is safe (and in Europe, it has healthier options: bonus!) Then there are just risks that necessarily were undertaken constantly—constant use of public buses and trains, tourist attractions that have been visited by millions and millions of people, and just the variety and amount of people around at any given time, to name a few.

Like most people, I had no understanding of how severe Benjamin’s allergies are. His dad was one of my first professors in law school and I remembered him telling us about Benjamin and the need to keep his cell phone on during class in case of an emergency, but I know now that I did not comprehend the severity of Benjamin’s condition. After all, one of my best friends had a peanut allergy growing up and it never came up unless someone offered her a Snickers bar. But after spending any amount of time with Benjamin, you get how serious his allergies are and how constant of a job it is to be surveying situations, predicting the behavior of others, truly understanding the foods you consume, and still getting to be a kid, having friends, and having a life.

Unfortunately, I got to experience his allergy in a way most people never do. One evening toward the end of our time in Rome, my roommates and I were invited over for dinner at his family’s apartment. Jennifer made a lovely meal of two of Benjamin and Natalie’s favorite pastas (full of fresh, authentic Italian ingredients, of course!) Shortly after we sat down to eat, Benjamin felt something weird about his mouth. He politely excused himself from the table and went to the bathroom. His dad followed behind shortly after. We sat at the table slowly beginning to understand what was happening. Benjamin began exhibiting a second symptom and that is the clue that something is very wrong. Benjamin was in anaphylaxis. He, his parents, and his sister handled the situation with remarkable poise. They understood the situation, diagnosed the culpable pasta, administered the EpiPen, asked us to stay and watch Natalie, grabbed the ingredients they cooked with (for further diagnosis purposes), and ran down a caught a taxi (deciding this would be faster than an ambulance) to the nearest hospital—all within about two minutes. They then overcame the language barrier and had Benjamin in with the emergency room doctors within fifteen minutes of the onset of the attack. It was remarkable. And scary.

The culprit of this vicious attack? An obscure name for cashew dust in the spaghetti sauce. Not only is this an unexpected ingredient, but they also did not use the standard word for cashew. Another example of when even diligently reading the ingredients does not help. One bite of pasta with a tiny amount of cashew dust was all it took to nearly take this person’s life.

Of course, a service dog will not help with these types of food-based reactions, but this goes to show how sensitive Benjamin’s allergies are. A service dog can help relieve the environmental concerns (think about how many things you touch in a day that someone before you could have touched after eating some sort of nut). Being a teenager is hard enough; a service dog will help this smart, happy, wonderful kid not have to constantly face his mortality.

Helping Hands

My eight-year old cousin had a summer job. The job he chose was to walk dogs. On his flyer there was a spot that read, “All the money I get from walking your dog will go to my cousin who has a peanut and tree nut allergy. He is raising money for a service dog that smells nuts.” I thought it was really special that he would give me all his money that he got from walking people’s dogs all summer. He could have used it for himself and kept it, but instead he thought of me and wanted to give me the money or my service dog. When he gave it to me I almost started crying. In comparison to how much I finally need it was not a huge amount, but I could tell that he actually did not want to keep the money for himself. He wanted to give me the money so that I could have a service dog. That is why I think that it was just as good as giving me all the money that I need to buy the dog. He did not keep any for himself. He gave me all of the money he had earned. I don’t know if he is reading this or not, but I want to thank him anyway, because no one forced him to give me the money. It was all his own free will.  And it really matters that he gave his money to help me. Even small donations really make a big difference.

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.

My Survival Strategies

I have survival strategies. Here is my list of the best ways to NOT have a reaction:

1.  I always do “the scan” when I walk into a room to make sure that everything is safe inside.

2.  Anytime I sit down to eat, I wipe down the table that I am going to sit at. I do the same thing on an airplane.

3.  Any time that I go to a party at someone else’s house, I eat before I go.

4.  I also keep an early bedtime and a clean house so that I keep my immune system healthy.

5.  I wear an epi-pen around my waist.

6.  I have emergency money in case I am with friends and they buy dinner at somewhere that is not safe. I can go and find a safe place for me to eat, or buy a coke.

7.  I am learning to cook from scratch.

8. I choose non peanutty sports. I swim, I bike, and I hike.

9. I read every label every time.

These strategies are important because they are ways for me to keep myself safe.

***These are all important, but the most important strategy is actually to learn to know that life is unfair, and say no to things that are not safe. Sometimes it is tempting to say, “Oh, it’s just once, and it’s only cross contaminated, it won’t hurt me.”  But the truth is, whatever it is, it will hurt me. With all of these strategies, I am prepared for whatever is thrown at me.

Pics of Trac-E

We were thrilled to get some pictures of Trac-E (who will be Benjamin’s service dog) this week from her obedience trainer.  Thanks, Ted!

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Trailer time

I got a Burley tail wagon dog trailer yesterday. I am really excited about it. I cannot wait to try it out. Of course, that is hard to do when you have strep throat. I will only be contagious for twenty-four hours though. I will go this weekend, but I don’t know if I can wait that long. I am also kind of worried about balancing. Maybe I will have to get a balance band! I hope that the trailer will not be too much harder to pull, though. I also hope that it is not too heavy. It would be hard to pull up hills. In fact, I will have to find out what happened to my gears last time I was on a hill or I might have to walk it up (not 🙂 )! Last time I tried to shift gears on a hill, it did not work very well. Now I am stuck on gear six, the hardest gear to pedal in. I will figure it out though. I will have to test out the trailer before I go on the Iron Man, so that I will know how much sooner I have to stop. I hope this works!

“Safe” foods that aren’t safe

Not all things are hard about Benjamin’s food allergy, and there are lots of ways we have great times. We’ll post more of that in the next few days also, but some of these earlier posts set some background in case readers are newer to his allergy.

One of the things that is hard is figuring what foods are safe.  As Jennifer said yesterday, there is never a “safe list” of foods or restaurants, since manufacturing lines and preparation procedures change often.  This is frustrating to us, and to anyone who needs to provide food for Benjamin or anyone else.  (It has led others on the internet to create lists, but those aren’t a good idea generally.)  For example, one standard food often listed is the candy “Smarties.”  A quick search just now revealed that these were on a “safe foods” list for Halloween 2011 that someone created.  Here’s why that’s a bad idea.  Not all Smarties are safe!

As we bought some food last week to do some allergy training, we bought one bag of name-label Smarties (always considered safe) and one bag of a brand called “Nice! Smarties (r).” The name-brand bag is considered safe and the label does not indicate otherwise.  The off-brand bag is a 3.75oz bag sold at Walgreens and if you open the bag the individual candies are not labeled but look identical to the safe Smarties.  If you read the off-brand bag, they are clearly not safe: There is a statement “This product was packed in a facility where peanuts, tree nuts, milk and soy are used in the production of other products.”  I know quite a bit about allergies, and this one surprised me to find unsafe Smarties.  But when I just looked this up specifically, the main Smarties website says that they license their product to “rebaggers” and it might not be safe.  Ugh.  Safe food that is not safe.

For store bought foods, this means we are left reading labels.  Every label. Every time.  But as I’ll write about later, not even this is foolproof.  US law does not currently require adequate labeling of foods.  Only the top 8 allergens must be listed, and even then they must be listed only if they are actual ingredients.  Any “may contain” statement on a bag (or “packed in a facility with”) is not required by law but placed by the company to possibly protect from other legal liability.  So these show up often when they are not necessary, cutting out foods that might otherwise be safe.  And when there is NOT a may contain statement, that does not mean that the food is necessarily safe since there is not a required disclosure.  Unlabelled foods can and do cause anaphylactic reactions — as here when a girl rushed to the ER last month from one bite of Entemanns muffin that was cross contaminated with tree nuts (and not printed on the product label).

An admin note about the “donate” button

If you’re visiting this site and considering giving to help Benjamin’s fund-raising to get a service dog to help with his food allergy, thanks!  A friend just let me know something about the “giving” button in the top left sidebar.  When you click through to the Paypal screen, it’s easiest if you first enter an amount you’d like to give and then press update total.  (If you fail to “update total” then when you fill out your credit card or paypal info the system might erase it and tell “you can’t enter $0 as a donation” and you’ll have to fill out your personal info again.)

Thanks again, and if would rather donate by check let me know and I can facilitate it.

Life with a nut allergy

I am constantly worried about what I eat and touch because of my peanut allergy. It’s really hard to be around people who don’t understand what life is like because it is extremely hard to communicate how serious I have to take my allergy. Especially at thirteen years old, most people don’t want to believe that I know more than they do about any topic, and they think they’re right even about how to keep me safe around nuts. It’s even harder when a kid doesn’t understand because it makes me a target for bullying. It scares me when I am walking through class and I suddenly feel a finger on the back of my neck and hear the words, “Ha, ha, I just ate peanut butter.” They could actually have had something containing nuts and I don’t know if it is real or not.  I have to run to wash my neck off (which is extremely embarrassing). This happened to me in fourth grade.

Every time I walk up to a door, I get scared. I have no way of knowing what is on that door. I always have to drink out of a water bottle because I have reacted from a water fountain before. I often have to turn down treats at church and friends’ houses because they are not safe. I always hate when it is time to eat cake at birthday parties because I rarely get to eat it. I hate to say this, but I even know what it feels like to have a reaction so bad that I have to use an epi-pen. I almost had to use the epi-pen on Christmas Day. That made me mad.

I even know what the epi-pen feels like and I promise that it is not fun! Its needle is a little more than two centimeters long. It hurt so badly when it went into my leg that I could not stand up. Dad had to carry me to the hospital. In Italy, I reacted to one bite of pasta sauce that had ground cashew in it (the label was in Italian). The reaction was instant. I have also had an anaphylactic reaction from a doorknob or a water fountain.

When I go into anaphylaxis, it is scary because I can feel my throat closing off and I have horrible pains in my stomach; my skin is so itchy it feels like it is on fire. It is scary because I know those feelings mean that my body is shutting itself down. Those feelings are also scary because they mean I will have to spend the night in an uncomfortable hospital bed in constant worry that I might have a biphasic reaction. I might have to have a second epi-pen and a second shot in the rear end and then they might have to intibate me. That is where they put a tube down my throat so that I can keep breathing. My life is scary because I know that unknown things around me can send me into anaphylaxis.

[I posted more about living with an allergy here ]