Most of what I write is humorous. Sometimes things happen that aren’t. This is the spot for those. I imagine I’ll occassionally post here about life with food allergies. They aren’t the worst thing in the world, but they’re not that funny either.
BAD DAY — posted Monday August 6, 2007
I don’t know how to tell this story. I am not looking for pity, or even for understanding, because in all honesty, I don’t think it’s possible to understand this situation unless you experience it daily. Unless you live it every hour, every minute, every second of every day. What’s the point then? If I’m not looking for understanding then what am I looking for? Maybe I’m just hoping to bring this issue to your attention and raise your awareness of it.
Some of my readers, primarily family, will sense an eerie familiarity in this story; feel like they’ve heard the basics facts of this before. I’ll tell you now that’s because the incident described here happened some time ago and I did indeed tell some of you about it in person, or by phone, or by email either the day of, or the day after it happened.
That said, I guess the best way to proceed is to just jump on in…
Did you ever wake up and KNOW it’s going to be a bad day? That’s what happened to me on Thursday, May 11, 2006. It was a cloudy, dark morning; rain was predicted and storms were coming. Literally and figuratively.
After breakfast I dropped my son, then 4 years old, off at daycare, and headed out to work with this overwhelming feeling that I should turn around and go home. “This is not going to be a good day,” I thought. “I can feel it, and I’ve felt it before, and each time I’ve been right.” Unfortunately, my instinct was about to prove itself once again.
Rain began to pour from the sky and two road closures from car accidents forced me to turn around and take different routes, but none of them took me back to my house. Eventually I made it to work.
Lunch went by without incident. The phones were quiet, and to me, that’s always a source of relief. In my life, when the phone rings during lunch, my heart stops. It might be trouble, news I don’t want to hear. But on that day, I made it right through lunch and decided my earlier concerns were probably unfounded.
Then my cell phone rang. It was Julie, the director of my son’s daycare center. She wasted no time in getting to the point: “Your son is coughing. He’s upset, and he’s asking for his nebulizer…”
Now, what to do? We don’t keep a nebulizer at school. My son only has asthma when he catches a cold. As of that morning when I dropped him off, he was healthy. He didn’t have a cold and he hadn’t been coughing. Naturally I looked at the clock. It was 2:08 p.m… a good two hours past lunch, yet still within the window of possibility for a reaction. Although all food he ate for lunch that day was stuff he’d eaten before…
Did I mention that my son, in addition to asthma, has food allergies? No? Well then, I guess now would be a good time to mention that. He was diagnosed with them when he was an infant. It was apparent when he was just 2 weeks old that something wasn’t quite right, but it took nine months of near weekly doctor visits to get a proper diagnosis. In the early days we were at the pediatrician’s office so often that I began to worry the doctor would think I had Munchausen by Proxy. I didn’t. As I said, my son has food allergies; multiple food allergies. He is allergic to milk, eggs, peanuts, and tree nuts. These are also the kind of food allergies that are referred to in the allergy world as life threatening.
LIFE. THREATENING. There. I said it. Those aren’t easy words to write. They are even harder to say out loud. In the food allergy community they are mostly whispered in the way people used to whisper the word “cancer”. The truth of this affliction is sometimes that shocking, that astonishing, that people are loathe to take it seriously. If we whisper it, it might not be so bad.
And therein lies a problem. If we continue to whisper the scary dreadful truth, will anyone hear us? Will anyone care enough to do something about this? Something needs to be done. More money needs to be directed towards research for a cure because right now the number of children with this condition is exploding.
In just 10 years time the incidence of food allergy has doubled. And today, according to The Food Allergy and Anaphylaxis Network, one in 17 children under the age of 3 is afflicted. On the whole, over 12 million Americans or 4 percent of the population have food allergies. Is your child in school yet? One (or more) of their friends will probably have food allergies. After all, some 2.2 million school-age children do.
Researchers don’t really know why these numbers are exploding. They have many working hypotheses, however. I’ve read their various hypotheses and for what it’s worth, I don’t agree with any of them. The current leading hypothesis is called the Hygiene Hypothesis where researchers believe that our society with all its antibacterial soaps and immunizations and industrialization and progress is just too clean. So they theorize that the body doesn’t have the onslaught of dirt and grime and viruses and bacteria to battle. With nothing better to do, they suspect the body launches an attack on otherwise harmless substances, like food. This results in an allergic reaction.
Obviously, I’m just one person and one person does not make up a proper scientific sample, but anyone who knows me or has visited my home can probably attest to the fact that I am not the best housekeeper in the world. You’ll find some dirt and germs here; still we have food allergies.
Allergic reactions from food allergies can manifest themselves in myriad ways. Most commonly, exposure to a food allergen results in an itchy or tingly feeling mouth; hives; swelling of the tongue or the throat; and vomiting or diarrhea. At its worst, a reaction can result in difficulty breathing and anaphylaxis, the most severe type of allergic reaction involving several bodily systems which, if not treated quickly enough, can lead to death. That’s where the life threatening part comes in.
On the phone, Julie reported that my son’s breathing sounded labored. She said it was hard for him to catch his breath. She handed the phone to my son so I could take a listen and try to talk to him. He said to me “Mommy, I’m coughing. I need my nebby… Can you come get me?” I asked him if it was hard to breath, and he said yes before he started crying.
This wasn’t my son’s first reaction; he’s had many. This year we joined the local fire department’s “ambulance club”. We pay a flat yearly fee and then we don’t get billed when we need an ambulance. Whether we need them one time, five times, twenty times or more in a year, it doesn’t matter. We’re a member and they can’t bill us for their services . This is not a club you want to join.
Some of my son’s reactions happened before he was ever diagnosed and we had no idea or understanding of what we were witnessing. All we knew was our son was fine, happy and eating one minute and very, very sick just a few minutes later. Some of his reactions have included hives and when you have asthma they are nice to see. At least I think they are. They are a helpful way to determine that yes, this is an allergic reaction. On two occasions my son had reactions where his only immediate symptom was sudden breathing distress. Without hives or other tell tale symptoms of a reaction, a person with food allergies and asthma may experience difficulty breathing and reach for their asthma medication. That has proven to be a costly mistake and resulted in more than a few fatalities when victims failed to recognize or admit to themselves that they were having an allergic reaction. They failed treat themselves with life saving epinephrine because they didn’t realize the seriousness of their situation. Because of this, doctors now urge those patients with asthma and food allergy to always treat breathing problems as a food allergy reaction if they aren’t certain which they are experiencing. The epinephrine that treats a food allergy reaction will help in an asthma attack as well.
Since I wasn’t sure if this was an asthma attack or a food allergy reaction, I instructed Julie to give my son his EpiPen and call 911. I gathered my stuff, alerted my husband who happens to work in the same building, and together we ran to the car on our mission to meet the ambulance at the emergency room.
As we were getting to the car my cell phone rang. It was Julie again. She said my son was very upset and she thought maybe he would calm down if I talked to him.
“Mommy!” he cried through coughing fits, “I don’t need the EpiPen shot, I’m fine!”
He continued to cry and cough and I tried to calm him down. Julie got back on phone. “Sorry” she said through her own tears. “I thought talking to you would calm him down, guess not. I’ll give him the shot now.” I told her she would probably need someone to hold my son down.
It’s simple enough to use the EpiPen. You simply pull off a gray end cap and position the pen above the outer edge of the upper thigh and jab it into the leg. You hold the pen in place like that for ten seconds, then pull it out. There are no “do-over’s”. One shot can save a life. One miss could be a disaster. Be careful not to inject yourself or stick yourself with the exposed needle after you’ve given the injection.
My son has received a shot of epinephrine like this on three occasions. It hurts a little and it leaves a bruise that causes him to limp and complain of leg pain for days afterward. But at least he’s alive to complain.
As I was speeding toward the hospital my cell phone rang again. It was Julie calling to tell me that the EMTs had arrived and my son was on his way to the hospital in an ambulance. That was fine. The hospital was where we wanted him. They have life saving equipment there.
Most allergic reactions resolve with only one dose of epinephrine. Somewhere between ten and thirty percent of cases, however, need multiple doses of epinephrine. But even when one shot stops the reaction cold, it’s possible for the reaction to return later in what’s called a bi-phasic reaction. This is a second reaction which can happen 4 hours or more after the initial reaction has seemingly resolved. It can be worse than the initial reaction. Thirty to forty percent of all reactions are bi-phasic. Experts recommend that patients stay in the emergency department for four to six hours after an initial reaction for this reason. If you have a bi-phasic reaction the life saving equipment and the doctors who know how to use it will be right there.
Do you know what it’s like to rush to the ER not knowing if your child is dead or alive? I do. Three times over.
Do you know what it’s like to speed down the highway in the pouring rain, shaking and sobbing with tears streaming down your face as you think back to that morning’s breakfast and how that might be the last meal you ever share with your child? How that morning, when you kissed him goodbye at daycare may have been the last time you saw your child alive? How that morning’s drop off may have been the last time you heard your child’s sweet voice say “Mommy, I Love You”? I do.
When my husband and I arrived at the hospital, we ran to the ambulance entrance but my son wasn’t there. We ran into the ER, but he wasn’t there either. The ER was empty save for one nurse who was helping a young man complaining of chest pain. I had to wait my turn. I stood there, frantic, shaking, and tapping my foot while quietly crying and waiting for someone, anyone to help me find my son. My husband was there beside me and then he was gone! He scrambled through a pair of double doors behind a patient who was being wheeled in on a stretcher, leaving me stranded, because the doors only opened with a pass card.
After what seemed like hours I was taken back to my son. He was sitting on a hospital bed wearing the standard issue blue hospital gown. My husband and a teacher from his daycare were with him. He wore a hot pink hospital i.d. tag around his ankle, a pulse ox monitor on his finger. He was watching Jimmy Neutron on the hospital television. When I stepped into the room his face was waging a war. He couldn’t decide if he should be happy to see me or if it was okay for him to break down cry over the insult of the EpiPen and the cold sterile surroundings. His expressions clearly showed this. He said was hungry and he wanted to go home, but it would be hours before we could leave.
The daycare teacher had ridden to the hospital in the ambulance with my son. Furious with my husband for leaving me stranded at the ER admissions desk, I told him to take the teacher back to the daycare center and talk to director about exactly what happened.
They left and I stayed with my son. I spoke with the doctor as he examined my son and I explained what I knew of what happened. But now, sitting beside my son who appeared to be fine, I wasn’t so sure I did the right thing. Maybe, I thought, he didn’t need the EpiPen? The doctor, however, assured me that he did. That by instructing Julie to administer the shot and call 911, I did the right thing. Given my son’s history of food allergies and past reactions, he said I did the right thing. He said, had we waited to give the EpiPen, my son might have been in more distress. I chose to leave the conversation there. I did not want to know if “in more distress” was code for dead. Later that evening we were discharged from the hospital with orders to follow up with our allergist. Also later that evening, I wasn’t surprised to find my son limping and complaining that his leg hurt. But I guess the hurt is good. It means he’s okay. It means he’s alive.
In the United States, some 200 people die from anaphylaxis, the most severe form of a food allergy reaction every year. As of this writing, there is no cure for food allergy. The only “cure” is avoidance. Don’t eat or touch the offending food, the food you are allergic to. People with food allergies have to avoid their allergens to avoid a reaction. It seems easy enough to do but it’s not always possible. Food allergens show up not only in foods, but in soaps and lotions, cosmetics, and medications. Vigilance is required, but accidents happen.
The daycare director reported that my son negotiated with her about how he didn’t need the shot. She said he finally gave up his arguments and let her give it to him but he told her how to do it, exactly where to give it, and that she needed to call 911 and could she please put a band aid on the spot afterward? That’s cute, but four year olds should not have to know how to save their own lives.
The next day I reviewed entire incident with my son’s allergist. He too felt we did the right thing. After I hung up the phone I got my son’s breakfast and he promptly spilled his orange juice all over himself and the floor. I cleaned it up with a smile, helped him change into dry clothes, and drove him to daycare. I didn’t want to, but I had to. This life, it’s like riding a bicycle. If you fall you have to get back up and get back on the bike again. If you don’t, if you hesitate from the fear of it all, you’ll never ride again. And so you get back up, put your feet on the pedals, and push on.
by bellevelma, Copyright 2007
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