At 8 a.m. this morning, with our 2 tablespoons of peanut butter in hand, Kelley, Will and I presented ourselves at the Children’s Hospital Allergy department so that Will could do his Food Challenge.
What’s a ‘food challenge,’ you might ask? Well, it’s when you take the thing that you’ve spent over a year avoiding due to its potential to cause the death of your child and, yes, you feed it to him.
Now, of course, the reason you do this at the hospital is so that, should that worst-case scenario seem imminent, there are presumably enough qualified medical personnel on hand to bring him back to life. Still, as he sat there, looking suspiciously at the nurse who’d just given him the spoonful of peanut butter and telling her that he wasn’t supposed to eat it, I had to use every bone in my body to resist telling him to drop it and run.
“It’s o.k., Will,” I said instead. “That’s why we’re here. To have you eat peanut butter.”
Since that night a year ago November we’ve spent a lot of time trying to figure out what caused him to have such a ‘sudden and severe’ (the clinical terms, apparently) reaction on the side of the highway. There was no x-ray taken in the emergency room so no one was able to tell whether the top of his throat was closed (which would indicate anaphylaxis, i.e., what happens when you eat something you’re severely allergic to), the bottom of his throat was closed (which would indicate a severe case of croup or, alternatively, an asthma attack), or, simply, if he’d swallowed something and was choking on it.
The fact that he’d been asleep for three hours prior to suddenly waking up coughing pointed away from the choking idea, whereas the fact that his inhaler only seemed to make things worse made it seem like asthma wasn’t a factor either. In nearly a third of fatal anaphylactic shock cases, we were told, the case is never determined. Since Kelley had eaten a bag of nuts in the car two hours before the reaction occurred, however, it sounded like that could be the culprit.
When something like this happens, of course, the heavy artillery comes out. We carry EpiPens wherever we go. We read labels for hidden dangers. We know the doctor’s office phone number better than the phone numbers of most of our family. We also go to the doctor on a nearly monthly basis, whether for asthma check-ups or further allergy tests.
Over the past year Will has had skin tests to see what he might be allergic to. (Just about everything, apparently, although some things more severely than others.) With the peanut test being inconclusive, he had a second test (negative), and then a full-on blood test (negative). With food alergies, though, as anyone who has dealt with one knows, two negatives don’t necessarily make a negative. In order to be completely sure, you need to actually eat the food.
To be honest, I was less nervous about it I thought I’d be. Considering that, as we were in the height of the aftermath I wanted to just go and sit in the parking lot of the Emergency Room and have him eat a PB&J sandwich so that we could know once and for all, well, it was kind of nice to know that for once I seemed to be in synch with the world of science. It was kind of like getting the EpiPens — a calming of the nerves, so to speak.
And, after sitting there this morning for three hours in the safety of the nurses and doctors who work at one of the best children’s hospitals in the world, I was feeling all good and proud of myself that we’d made it through. He ate one spoonful of peanut butter, and then another. No swelling, no hives, no death. Thank you, God.
So I wasn’t at all prepared for the nurse to tell us as part of our discharge, “As you know, the reaction can take place up to 24 hours after exposure.”
Um, come again? “24 hours?” No. Suffice it to say that I didn’t know that. I didn’t know that at all. Even me, who worries about everything in the world, thought that all I needed to be concerned about was the 6-7 hours after he ate it. After all, that was the time period everyone seemed concerned with when they were trying to figure out what could have cause him to nearly stop breathing that night.
Still reeling from the fact that they were sending us back into the non-medically-trained-staff world of our daily lives, I almost missed the part where she said, “And we’d like him to eat 2 tablespoons of peanut butter each day for the next three days. Oh, and you shouldn’t do it before sending him off to school because you want to be in a position where you can watch him for the signs for at least half an hour afterwards. Be sure to have the EpiPen with you at all times. Bye, now.”
O.k. So maybe she wasn’t quite that flip. Actually, she was kind of great — both throughout the morning and at the end of it, taking the time to deal with my sudden inability to leave the protected womb of that hospital room and answering all my questions with confidence and reassurance. Still, I am now sitting here on my couch, TV off as I listen for him to suddenly wake up coughing like on that night a year and a half ago.
I look at the list of the symptoms we’re supposed to be watching for:
His or mine?
* Itchy Skin
The kid has the driest skin ever. I’ve never known his skin not to be itchy.
* Throat Tightness
For a year I’ve been asking him if his throat is o.k. The more I do, the more anxious he gets. (Which means that I have no idea if the bullet point #1 anxiety, should it occur, is anaphylaxis-related or mommy-induced.)
No way in hell he’s getting a bath until this testing period is over. I don’t care if he’s so dirty that he looks like Pigpen. I am simply not capable of thinking clearly enough to make the distinction between hives caused by his dry skin reacting to the bath and hives caused by peanut butter. I pick the free pass on that one.
* Facial and/or Lip Swelling
I guarantee you that if you look at your kid to see if his lips are swollen (and therefore indicating that a potentially fatal reaction is about to occur) you will see a set of lips that are swollen. And, by the way, allowing him to have a Pixie Stik as a treat after dinner is a very bad idea. Sour/sugary abrasive dusty candy does not a non-swollen set of lips make.
* Stomach Cramps
Well, yes. These are kind of obvious. But when you’ve spent the last month trying to avoid getting the stomach bug that various friends and family members are getting, how the hell are you supposed to know if it’s just a case of bad timing?
He has a cold. ‘Nuff said.
There are a few more items on the ‘Watch For’ list, “fainting” and “loss of consciousness” among them. I figure that if those happen, I’m pretty clear on the need to dial 911. Then again, he’s now asleep in bed. Kind of hard to determine whether someone’s lost consciousness when they’re already out cold.
The rule of thumb, apparently, is that if two ‘systems’ are affected simultaneously — i.e., if he’s vomiting at the same time he’s got hives — then it’s an anaphylactic reaction. Although he’s coughed throughout the day, sneezed quite a bit, and been itching his skin for hours (“But it’s just normal itching, Mommy”), I’m fairly certain he isn’t experiencing anaphylaxis. Yet. And I am desperately trying to believe the words that our asthma case manager said to me the week after this happened — despite the dark, despite the highway driving, despite the fact that you’d heard him cough on countless occasions before: “You knew.”
We knew that the cough was different that time. We knew something was wrong enough that we pulled off onto the side of the highway. We knew something was wrong enough that we called an ambulance to meet us on the Mass Pike at midnight on the Saturday night after Thanksgiving.
On the Monday morning after this all happened, we sent Will to school with a peanut butter and jelly sandwich. It wasn’t even a full 48 hours later, and at that point, no one had indicated that this could have been an allergic reaction. At that point, no one had yet mentioned that he was about this close to dying that night. At that point, I hadn’t yet had my near-nervous breakdown in the parking lot of his school when I left him in that room and realized that one of these days, I could be saying good-bye to him for the last time.
He didn’t die on that day, though, nor did he have a reaction of any kind that anyone can remember. So tonight, as I am sitting here and straining to hear any signs of distress, I will cling to that. He’s eaten peanut butter without any reaction. He’s had test upon test to bring us to this point. And, according to the discharge paperwork, he ‘was able to complete this challenge,’ which means that, according to all that is known, he ‘has likely outgrown the food allergy.’
But oh, how these next four days are going to suck.