Peanut-free or Not Peanut-free, Part 3 (One Year Later)

Just about this time last year, Pink had a close-encounter with a peanut butter sandwich on the bus on her way home from school (link). Based on the response I got to a letter I sent to the principal, I wrote a second letter to the superintendent (link). In both I argued that while I understood the district's reasons for not claiming to be peanut free, I also though they should be pushing for a safer environment for all children. In particular, I argued that the sack lunches the school provided for field trips should NOT include peanut butter sandwiches. Given the fact that kids like Pink had to choose between not going on the trip or living in fear because they were at heightened risk of allergic reaction given the sheer number of kids eating peanut butter together, I figured that my request was not an unreasonable one.

Following my message to the superintendent, I found myself in a lengthy exchange with her about our hopes and expectations and her very real limitations (apparently it's hard to police 800+ lunches to make sure no one sneaks in a little contraband). In the end, we agreed that the district would revisit their field trip sack lunch policy. The superintendent asked me for suggestions for peanut butter alternatives (to which I gave her a list about a mile long), and I didn't hear anything about it again.

Then, a month or so ago, Pink brought this home:

"The sack lunch includes: strawberry GoGurt, string cheese, 4 oz. applesauce cup, baby carrots, Cinnamon Toast Crunch cereal, Curious George fruit snack, and choice of beverage..."

Sure, this isn't really a "lunch." And, Pink still can't eat it, but, at least there is no peanut butter. Pink couldn't believe it when she saw the sack lunch menu. "Now I don't have to worry anymore!" she said with such a sense of relief that it that would break your heart.

*****

Yesterday, Pink's class visited a 19th-century living museum with her classmates. Despite the overcast weather, she had a great time exploring with her friends. She touched animal furs, tried her hand at being a blacksmith, and had a lesson in a one-room school house. 

Pink and her friends at the print shop.

The best part of all, though, is that on this field trip, she didn't have to worry about what everyone else was eating for lunch. Sometimes change can take a long time, and it isn't always perfect. Still, I'm reminded to never give up!

Parent of the Year

The award for awesome parenting at our house this week definitely goes to Ren. And given how spacey I am and how often I blow it, this is saying something. Ren earned this esteemed award because in one brief instant, he brought the reality of the epipen to life for all three kids. And for that, I will be eternally grateful. And, by "eternally grateful," I mean "WTH, Ren?!?"

We've had an epipen for awhile, and, peripherally anyway, Pink P knows we might have to use it if she ingests any peanuts. But, until yesterday, she didn't really grasp how an epipen works. This was intentional, of course. The last thing I want if Pink P experiences anaphylaxis is for her to panic about getting a shot. You try explaining to a five-year old that the shot will be a lot better than, oh, I don't know, DEATH.

We've always talked about it in only the vaguest terms: "If you accidentally eat a peanut and can't breathe, we'll use this to make you feel better while we take you to the hospital." Or, "We have to take this with us everywhere we go so we can to keep you safe." And I have to say, the whole peanut allergy/epipen thing was going pretty well. Pink P was aware of the need to avoid peanuts at all cost, but she wasn't scared about anything.

That is until Ren inadvertently injected himself.

And then screamed.

To his credit, he tried to regain control of the situation by a) claiming it didn't hurt (really, Pink P, it didn't hurt, not at all) and b) by being super silly and enacting an overly dramatic death.

But, neither kid was fooled. Not one bit. Probably because it clearly hurt. And also because before he claimed it didn't hurt and before he enacted his dramatic death he called out to me in a slightly panicked voice (see what happens when I leave the room to go to the bathroom?). And, we all know I'm not the calm, rational one in this relationship.

In case you're wondering, accidental epipen injections into fingers and toes are more common that you might expect. Ren "shot himself" (as Pink P puts it) when he was throwing away an old one and trying to properly dispose of the medicine inside. (I suppose that's one way to get rid of it). In 3% of the cases, the injection can cause blood vessels to constrict and stop blood flow to the digit (Thanks interwebs, I didn't have enough to worry about, what with the back and the shoulder--have I told you guys about Ren's shoulder? It will probably need to be replaced in the next year, so, yeah, I'd prefer Ren didn't also lose a finger).

My initial internet search indicated we needed to go to the ER ASAP. But, a certain Japanese man I know is not going to the ER no way, no how. Of course, it was a holiday, and no doctor was in, so I called the pharmacy. Fortunately, the pharmacist didn't say anything about lost fingers, but he did point out the risk of soft tissue infection and suggest we go to the ER to get a strong antibiotic. Awesome (see earlier sentence about Ren and ERs).

In the end, we did nothing.*** Ren spent most of the day staring at/feeling his thumb, mesmerized by how it felt. And, after about 24 hours, it seems back to normal.

Pink P, on the other hand, is traumatized for life.



***We do not, however, condone you doing nothing. You should probably make better choices than we do. If this isn't evident to you by now, you obviously haven't been reading my blog posts very closely.

May Contain Peanuts

If you know anything about people with Aspergers and high-functioning autism, you know that they often lack the ability to be flexible and to discern the shades of grey that are so common in everyday life. This is something we deal with with Sky. All. The. Time. Most days, it's manageable. I mean, after awhile, you figure out patterns of thought and can head off a meltdown before it reaches DEFCON 1.

Most days.

But, then there are the days when you find yourself trying to sneak in some ambiguity. Those are the days when you can't win.

You will never win. No, really. You won't win, so you should stop trying.

Why tempt fate? Because some days it looks like it might be easier, that's why. 

Just like it looks easier to take the short cut through the wet rice paddy. I mean, you can see your house on the other side, why walk all the way around? I'll tell you why. Because you will always lose your shoes. Always. Not only that, you're likely to get stuck and then fall down when trying to pull your legs out. In the end, you'll be lucky if you can free yourself and slop back home covered from head to toe in mud. It always only looks easier. Always.

Today, I tried to take the short cut. Before you start judging, let me tell you why (then you can judge because it was pretty stupid of me). See, ever since we went gluten free, our choices in cereal have become greatly limited. There are two brands of corn flakes at our local grocery store that are gluten and dairy free. One tastes much better than the other. The one that tastes better says "may contain peanuts" on it. Pink P is desperate the eat the "yummy" corn flakes. She asks for them every single day. EVERY day. And every day, I tell her no because of her severe peanut allergy.

Tracking the allergens in food has become easier (and much, much more serious) since Sky learned to read ingredient labels. He reads them obsessively. He finds gluten, milk, and nuts in things I never imagined. He knows that Pink can have food that says "produced in a facility that also handles peanuts" but that she shouldn't have foods that "may contain peanuts." Most days, I am grateful for his complete dedication to this endeavor. But sometimes, sometimes, I really wish I could sneak one past him.

I knew the corn flakes "may contain peanuts," but I also knew that the chances were very, very slim. Plus, I hadn't been shopping, and that was the only box of cereal left in the cupboard.  

"Eat fast," I said, pouring a little bit into Pink P's bowl. I could imagine how Sky would react, and I knew we had about 10 minutes before he made his bed, got himself dressed, and came downstairs. Unfortunately, as she's prone to do, Pink P chatted nonstop and was still talking when Sky came into the kitchen. That boy has razor-sharp senses, and before he even made it to the table, he knew.

"Mom, that cereal may contain peanuts. WHY is SHE eating it?" And with that, he lunged toward Pink and tried to grab the bowl of cereal out from under her.  I put myself between Sky and Pink, and said in a very calm voice, "It's okay, buddy, I gave it to her. There are no peanuts in the cereal. Sometimes they just write that on the box to be safe."

You guys, there was no way I was going to persuade him. The box said "may contain peanuts." Pink P can't eat things that come from boxes that "may contain peanuts." It was bad enough that she was eating the cereal. Worse was the fact that I  had given it to her. There was no way that this could make sense to my black-and-white son. No way.

Sky ended up having a complete meltdown. As I dragged him kicking and screaming to his room, he repeatedly shouted: 

MAY CONTAIN PEANUTS!

MAY CONTAIN PEANUTS!!!

MAY CONTAIN PEANUTS!!!!!!!!

By the time I got him to his room and ushered him into his top-bunk safe space, he was screaming, "I KNEW IT! YOU DON'T LIKE ME, YOU DON'T LIKE PINK P, AND YOU DON'T LIKE STOW. YOU'RE TRYING TO KILL ALL THREE OF US!" Because, obviously, that made infinitely more sense than mom bending the "may contain peanuts" rule.

I learned my lesson. I promise. I will never, ever, EVER try to bend the rules again. 

At least, not when Sky's home. 

Image from http://www.animeyume.com

WTF Vermont Curry?!?!!

Now I don't usually use foul language, but seriously who ever heard of peanuts in Japanese curry? Not me, obviously! Peanut butter is not at all popular in Japan, and aside from a few bar snacks, you rarely see peanuts, period. So, why would it occur to me or any other parent to a kid with a severe peanut allergy to check the label on the Japanese curry?

The good news is that Pink P is fine. The bad news is that even though she complained of CHEST PAINS, I told her to get an ice pack (her panacea of choice, along with the princess bandaids) and sent her to bed. In my defense, Pink P is known for melodrama and overreaction. I can't count how many times we've discussed the story about the boy who cried wolf. Just in case, I gave her an albuterol treatment, thinking she might be headed into an asthma episode.

I did not, however, break out the epipen. Why would I? We don't have any peanuts in the house, and if we did, she knows enough to check with someone before eating anything new. So, instead of keeping her safe, I made her eat the curry, which she doesn't really like anyway, and then sent her to bed without realizing she was having an allergic reaction to it.

Thanks a lot Vermont Curry. Thanks for once again making me feel like the shi**iest mom on the planet. And thanks, too, for setting off all of my panic sensors so I can never let my kid eat anything ever again without being totally paranoid.


**Oh, and consider this your PSA: VERMONT CURRY HAS PEANUTS IN IT.**

Got Milk?

Well, it's taken some time, but we've finally embarked on the path toward biomedical/dietary interventions in hopes of lessening Sky's behavioral issues and Pink P's allergy attacks. Many parents (and some researchers) have found that casein and gluten for kids on the spectrum can cause something akin to euphoria. If you know my kids, you know they really don't need any more of that. So off we go...

Step one toward being gluten and casein free (GFCF): eliminate all dairy. As soon as I committed to doing this, I suffered one of my week-long grilled-cheese-on-rye cravings (perfect timing). We started with dairy because it should be easier to remove from our daily menu and because the results of the diet change are usually more apparent quicker than with gluten-related changes.

To begin, I explained to Sky and Pink P how and why our diet was going to change. I listed foods they could no longer consume--milk, chocolate, cheese, yogurt and ice cream--and then pointed out that we could find some fairly tasty alternatives. I didn't mention all the foods with milk as a secondary ingredient--pancakes come to mind--because I didn't want to trigger a panic meltdown. I still haven't pointed out that pancakes are off-limits for fear of incurring their displeasure during the first weeks of this process. At some point, I totally expect Sky and Pink P to be displeased, but not quite yet.

Then I took them with me to the store and let them choose milk-alternative drinks and yogurt-alternative snacks. We even bought "Italian ice" (a.k.a ice with flavor) because there was no way I was gong to spend $8 on a quart of coconut milk ice cream (incidentally, Ren's impulse buy of an ice cream/sorbet maker at Costco a couple of months ago--it was on sale--looks a bit like premeditated genius right about now). Since milk and cheese have always given Pink P eczema, the kids are already familiar with milk alternatives. They even like some of it.



So far, good. I just need to remember we are now dairy-free and be vigilant when we are out. I also need to speak up the next time Big Sissy visits and wakes up early and makes pancakes because she forgot to read the label on the mix and had only learned about the dairy-free thing 12 hours before.





Image: bitewallpapers.com

What? Me Worry?

Before Sky was born, I made a conscious decision that I would not be one of those worrying-type mothers. There were three reasons in particular that I was able to convince myself all would be fine: 1) Ren had done this before, 2) we were/are older parents so, in theory, could handle anything, and 3) worrying parents only seem to make their kids crazy. I didn't want to be one of those parents.

So it is that I approached the birth of my first child with a startling calm. And Sky as a baby made me think my approach was not only warranted but also really smart. He was not terribly fussy, grew like a weed, and slept through the night at four weeks. It wasn't until Sky was about 20 months old and he started day care part-time, that I was forced to start worrying. He was on target in terms of language and general knowledge but way behind socially--at least this is how the daycare helpers defined his propensity to run into things. Years later (as you know from earlier posts), we figured out what led to the discrepancy between his intellectual and social skills. And in the interim, we worried constantly (and sometimes still do) about his troubles interacting with his peers.

With Pink P, it was less a result of my conscious choice and more the result of circumstances that made me take a laid-back approach to parenting. She was born seven weeks before we moved to Japan for 15 months. In the intervening weeks between her birth and our move, we sold our house, packed up all we owned, divided it between storage and the seven suitcases we carried with us to Japan, and boarded a plane for Tokyo, where we knew no one and had no idea what kind of living accommodations awaited us. Pink P didn't do nearly as well sleeping at night as Sky did (jet lag + Japanese sleeping arrangements = sleep pattern nightmares), but she was an even more laid-back baby. Since we were new to Tokyo, we would often set out for the day with no idea where we were going or how long it would take to get there. This meant I had no idea where I would find the nearest breast-feeding/diaper-changing station. No matter! Pink P never once fussed when we were on these early excursions, and when I did manage to find a place to feed or change her, she always extremely grateful and patient. It was as if,even as a baby, she knew exactly what kind of family she'd been given and she was totally okay with (resigned to) it.

For her whole life, though, Pink P had a red, irritated spot on her face, which we attributed to her pacifier habit. And the summer we moved back to the US, when she was 18 months old, this turned into eczema and hives. Then, on her second birthday, we discovered what peanuts can do to her. (All I can say is that I am glad she decided she didn't like the peanut butter and only touched a little bit of it to her lips. I'm also glad that Ren demonstrates more presence of mind than I do. "Give her Benadryl," he said without even thinking about it). Extensive allergy testing confirmed all that we had started to suspect: she's allergic to dairy, soy, and peanuts (not to mention dogs, cats and several other food chemicals we haven't figured out yet). Most of these are just annoying--they make her itch or give her eczema, but apparently a single peanut could kill her. As the doctor put it, "She can be in the same room as a peanut, but she shouldn't touch it." And then he gave me an epipen--in fact, he wouldn't let me leave the office without one. The moment they give you an epipen, it all seems a lot more serious. My vow not to worry became virtually unattainable when I realized a stray nut could kill my kid.

So now we are waiting on #3. Maybe it's the fact that life is slightly less insane--after all, I am neither in the middle of my Ph.D. coursework nor preparing to move to Japan for 15 months. Maybe it's the fact that I am getting too old for this. Maybe it's the fact that we didn't plan this and we weren't expecting it. Or maybe it's because both Sky and Pink P have turned out to have some very worrying conditions. Whatever it is, this time around, I am pretty much scared stiff. I'm toying with denial as a potentially more healthy alternative to sheer terror. I'll let you know how it goes.