Thursday, January 28, 2010

The Reaction

When Isaac was eight months old, he had emergency surgery to remove a periorbital dermoid cyst — a sort of benign tumor on his skull, next to his eye — after a CT scan had determined it was less than a millimeter away from infiltrating his brain.

After the surgery, my son, who had already proven himself quite a finicky eater in my early attempts at introducing table foods, became extremely orally defensive, and began to refuse solid food almost entirely. I did not know, at the time, that he had sensory processing disorder, and had no idea what was causing him to refuse food, or what sort of therapy might help him.

In the months that followed, his weight dropped lower and lower on the growth chart, and his growth slowed, until he finally met the criteria of failure to thrive. We took him to see several pediatric medical specialists without a successful diagnosis. During our months-long search for answers and help, we had him tested for common food allergies with a simple blood test, but the test came back negative.

We were advised at one point by a pediatric dietician to introduce peanut butter into his diet, because of its high nutrient and calorie content. (It is, after all, what doctors feed starving children.)

I was skeptical of this advice. Back then, the American Academy of Pediatrics recommended that parents delay introduction of peanut products until age 3 to reduce the chance of allergy (this advice has since been shown to be not only totally scientifically inaccurate but in fact detrimental — think the "All those doctors who have been telling parents for decades to put babies to sleep on their stomachs to prevent SIDS have just been scientifically proven to be totally talking out of their posteriors! Because they've been actually CAUSING SIDS with that unscientific, unproven advice! Who knew?"sort of wrong and detrimental — but of course I did not know that in 2005).

Plus, having seen his strong gag reaction to other really sticky foods, I wasn't optimistic that he would appreciate the finer points of peanut butter. But at this point I was desperate. And we had already had him tested for allergies once, hadn't we? So I took the dietician's advice. And at the age of 14 months, I fed my son a spoonful of peanut butter for the first time.

He promptly spit it out. And gagged. And made a face. And cried. And refused to eat or even touch anything else on his plate, apparently on the grounds that it might have been tainted with the Horror That Was Peanut Butter.

Fifteen minutes later, his eyelids puffed, and his cheeks swelled to twice their normal size.

And. I. freaked. out.

I was home alone with him, without a car. My husband was at work several minutes away. I called 911. Two burly EMTs from the fire department down the street showed up with the fire ambulance.

And they laughed at me.

"I don't see anything wrong with that baby," one said. "You're overreacting, I'm sure he's fine," said the other. "I don't see this swelling you're talking about."

I realized with horror that because my son was so thin for a toddler — he was in the third percentile for weight — the EMTs could not tell his face was swollen at all. They thought he looked like a normal baby. He did look like a normal baby. But not my baby.

They took my child's temperature and then left, refusing to take me to the hospital. I gave my son a dose of liquid Benadryl, scooped him up, and ran to our family doctor's office, which, thankfully, only was a mile and a half down the street. As soon as I walked in the door the receptionist, who had seen my son before, could tell there was a problem.

By that time, the swelling was already going down, and my annoyed and itchy toddler was returning to his normal cheerful self. But our doctor ordered a series of allergy tests at Children's Hospital just to confirm that peanuts, which seemed the obvious culprit, had truly been the cause.

For days, waiting for the testing appointment, I worried, convinced my child had a peanut allergy. I rounded up all the food in our house that was not clearly labeled peanut-free — including several of my son's few accepted foods — and despaired at the thought of throwing it all away. I already had an underweight child who was afraid of food for no apparent good reason. How many orders of magnitude more difficult would it be to try to help that child overcome his fear of food if he now had a legitimate reason to be afraid?

In those few days I lived the afflicted life of a parent who has just discovered her child has a food allergy. And then came the tests.

And they all came back negative. Every single one. Including the one for peanuts.

"He's not allergic," the allergist said. "There is no way he would have a total lack of reaction to peanut protein in a skin test if he had just had serious a reaction a couple of days before. It's something else in your house. Maybe he put his hands on a counter right after you cleaned it and then rubbed his eyes and got cleaner in his eyes, right before lunch? Kids this age have sensitive skin. We see mysterious reactions like this fairly often. You might never know what it was. Just hope it doesn't happen again."

So I threw out all my synthetic household cleaners. And a few weeks later, I tried peanut butter again. He still didn't like it. But his face didn't swell up.

In the four years since then, he has never taken a liking to peanut butter sandwiches. But he's certainly had the occasional Reese's Peanut Butter cup, and Peanut M&Ms. He's had trail mix with peanuts, and chocolate sundaes with peanuts, and peanuts in granola. He's eaten french fries cooked in peanut oil more times than I can count (Before you judge that junk food list, Judgy McJudger parents: remember — picky eater! Who needs to gain weight).

He certainly doesn't eat peanut products daily, or even weekly. But he has had them at least a couple of times a month for years.

Two days ago, at a school assembly, he tried a peanut butter cookie. And he made a face. And he spit it out.

And he broke out in hives.

And flushed bright red. And developed a blister on his upper lip. And he started itching all over, and complaining that his stomach hurt.

And then he started coughing and he couldn't stop even after a Benadryl Fastmelt and we had to take him to the emergency room. Where a doctor with a bedside manner about as warm and friendly as an avalanche falling on you gave him a double dose of Benadryl, prescribed us an Epi-Pen, terrified my five-year-old by jabbing a dummy demonstration pen into his thigh just to show us how it worked, without explaining to my son what it was first or warning him (and without telling him it had no needle in it) and then charged us $200 for ten minutes of his time.

And now I'm waiting. Waiting for an appointment at the allergist's office. To find out whether my son is allergic to peanuts.


Lori at Spinning Yellow said...

That's awful! I'm so sorry. Scary business these allergies. Sometimes our kids defy the normal reactions. We had kids in daycare that didn't have an allergy & then one day just did. Or we could never figure out what caused an allergic reaction even after testing. Hope you get some answers and never have to go through anything like that again!

Incidentally, I am taking Jane to the allergist for a "Peanut Challenge" test to see if she has an allergy before she goes to 1st grade and has to eat w/ all the other kids (they made Kindergarten nut-free for snacks to be on the safe side for possible allergies like hers, which she tested positive for when she was 15 months old & hasn't had any peanut stuff since.)

sugaredharpy said...

I'm so sorry, Jaelithe. I hope you get some answers for that sweet boy of yours.

tricia said...

I have had an anaphylactic peanut allergy since I was 2 years old, and I am now 28. Things have gotten much better with what I can eat (peanut-free labelling), and the understanding that others have about my allergy. I don't have any other issues around food, so it's really not a big deal for me anymore, and I bring my own food with me if I am unsure. I can imagine how much harder it would be if I was already limited in what I could eat, and then added an allergy on top of it.

I hope that's not what it is, and that you are able to find out what the actual culprit behind his reaction was!