A Food Allergy Lesson from a Headache

We believe that Zax gets migraines.

They haven't been officially diagnosed, but we've got the family history and they certainly fit the pattern. A few years ago, we learned to medicate him at the first complaint of a headache, because if we don't, we'll regret it when the screaming and vomiting set in.

We've also wondered if these migraines are tied to altitude and/or dehydration, because just about every time we take a trip to the mountains, he complains of a headache--and several vacations have been less fun because that's how they began.  I bring this up because Zax had a migraine yesterday when I picked him up from school.

The moment I saw him, I could tell that something wasn't right. He told me his head hurt, and as I dug through my bag for his ibuprofen, I asked whether he had told his teacher. We keep ibuprofen in the nurse's office for this very reason. He said he had told her, but she'd just encouraged him to drink more water. So of course I chatted with his teacher before we left, to make sure she understood that his headaches need to be treated right away.

When I asked if Zax had reported his headache, she said "No." All he'd said was that he was thirsty, so she'd told him to drink water. I explained about his migraines, and that I'll tell him to communicate better, but that he needs to get ibuprofen at the first sign of any headache. She seemed to understand migraines, and so I took my miserable child home.

Yesterday's headache was a doozy, and Zax threw up in the car before curling up on the couch at home for a few hours. He definitely needed earlier meds.

Looking at both sides of the story, I think that what probably happened was that he'd said "My head hurts but maybe I'm just thirsty and need to drink more water," ...or something to that effect. Out of context, his teacher probably didn't hear the first few words, and once she understood what he was saying, she just heard him report thirst. When I discussed it with Zax before bed, when his headache had, thankfully, resolved, he agreed that he'd probably said something like that. I told him that his teacher knows that he needs headache medicine now, so if he reports a headache and she doesn't respond the right way, then she probably didn't understand him. In that case, he should say it again, more clearly.

And then, of course, we started talking about his allergies in the same context. It occurred to me that the way he reports an allergic reaction may not always be clear to the teachers. Together, we discussed that if he reports a reaction and doesn't get the right response (meaning anything other than sending him with a buddy to the nurse's office) then he should say it again but make sure he says he's having an allergic reaction.

Kids don't always realize that they aren't clear to adults, and we parents don't always realize that our children's speech patterns don't necessarily make sense to people who don't know our kids as well. Just one more reason to make sure our kids speak up until they're heard if they ever have an allergic reaction!

Don't Lick the Dough!

Zax had a minor allergic reaction last night. And it was my fault.

We've been baking without egg for basically his whole life, but recently we were given the green light to start feeding him baked egg. On top of that, we've entered him into a Clinical Research Study where we've pledged to feed him baked egg on a regular schedule (I'll blog about it in detail at some point, I promise.)

Yesterday evening I was experimenting with a new bread roll recipe that had egg in it. The dough was so sticky that I needed help in the kitchen. I asked Zax to help me scatter some extra flour and get an extra baking sheet out. After he helped me, he pretended he was going to eat the rolls raw. I jokingly told him "no," so instead he ran around me and licked the dough that was stuck to the counter.

Alarmed, I told him to stop, so he started scraping the dough off with his fingernails so that he could eat it that way. I managed to prevent this and sent him off to wash his hands with the admonition that the dough had egg in it, and raw egg at that. I asked if he'd actually licked it and he said 'yes,' so I said I hoped it wouldn't be enough.

"For an allergic reaction?" he asked.

"Yes," I replied. "Or salmonella."

Sure enough, maybe five minutes later Zax reported that his throat felt funny. Benadryl resolved all symptoms within about 15-20 minutes, but still. Licking the raw bread dough.

I realized pretty quickly that this was really my error. I hadn't warned Zax that this particular dough contained egg. He's used to his allergens being in the house (not touching someone else's plate, etc) but he's never before been told he can't eat dough or batter. I don't let the boys eat it while we're actively baking, but since our baked goods never carry the threat of salmonella, my kids have never met a beater they aren't allowed to lick.

Until now.

I honestly hadn't thought about this risk in baking with egg until it happened. I also hadn't expected him to want to eat raw bread dough--but then, I seldom make bread products so he probably didn't realize it wasn't going to be sweet like pastry dough.

Lesson learned.

I apologized to Zax over dinner, for not realizing this risk and warning him about the dough I was making. He didn't seem too upset over it, for which I'm grateful.

And to top it all off, the rolls didn't even turn out that great. Zax didn't like them, which means I'll be baking (with egg!) again today.

*sigh*

Colorado Rockies Peanut Allergy Friendly Game!!!

Monday, August 3rd was a Peanut Allergy Friendly day with the Colorado Rockies!

We attended a handful of Rockies games when Zax was still a babe/toddler in arms, and we had no trouble at those games. Even after his peanut allergy was diagnosed, I don't remember having issues with the few Rockies games we attended. In retrospect, that was probably because his mobility was limited to our laps.

We took a break from games after Kal was born but then attended one last summer. It also happened to be weeks after Kal's peanut allergy was also diagnosed but not yet confirmed, and of course both boys were far more mobile.

The result was a perfect storm of paranoia. Nothing happened to either boy at that game, but I didn't watch any of the actual ballgame. My eyes were permanently on my kids, watching them for any hints of allergic reactions. I noticed the dozens of people near us eating peanuts, and couldn't help but cringe at the peanut dust that was everywhere. I wiped down the seats, but the kids behind us sometimes put their feet on the backs of our chairs, and more peanut dust would appear from the bottoms of their shoes. I was a paranoid mess, and didn't let the kids go so far as the bathrooms without their epis in tow.

I wasn't eager to repeat that experience, so when we discovered that the Rockies were having a Peanut Controlled game, we just had to attend!

The evening started out as a hit with the boys because they got to ride the light rail train for the first time in about a year!

Coors Field

When we reached the gates we'd been told to go to, our journey to our seats was marked by "No Peanuts" signs.

The game was not wholly Peanut Free. In fact, we had to sign hefty waivers releasing the Rockies of liability if anything happened at the game related to peanuts, because Coors Field is an open air ballpark and other people in other sections were still eating peanuts. These signs limited peanut contamination along our route to our seats.

Communication about this could have been a little better, though. One of these signs was outside the entrance gate, near a press entrance. I wondered in retrospect if we'd knocked there, would they have let us in and directed us straight to the proper elevators? An employee watched me take a picture of the sign but didn't say anything about it, and while I'd been told which gate to go to in advance, that had only been in response to my asking extra questions about park conditions, not along with the tickets I received.

Anyway, within the park they did a pretty good job of keeping most contamination out. The entire Mezzanine Suites level in right field was designated peanut free, even though it didn't fill up.

It was a pretty cool area, and one that undoubtedly usually costs much more money. It had an inside suite area with counters, tables, and big screen TVs plus a two-row balcony with the actual assigned seats.

We had a good time meeting other Colorado members of the Food Allergy Community, some of whom we'd previously seen online. We met the family of Betsy from FAACT and Lauren from the Denver Chapter of the No Nuts Moms Group. We also got to meet Duffy, a Peanut Sniffing Dog, and his family, along with lots of people touched in some way by peanut allergies.

This picture isn't pretty, but it's to show that they had several rows roped off with nobody sitting in them in front of our suites. This was to create a Peanut Free Buffer Zone.

We tried to get there early enough to get the free Rockies hats they were handing out, but we didn't make it. But we did get there early enough to see them warm up.





These two little dudes were happy to show off their Allergy Superheroes "Peanuts are my Nemesis" shirts and enjoy the game!

It took a couple shots to get the goofballs to both smile at the same time though.

Watching the game

I managed to catch The Wave in action!

Grrr, the Mariner's scored! (Actually, I think he was just grimacing because he didn't want his picture taken.)

One huge benefit of having the Peanut Free section in a suite was that the kids had more room to roam around. Which is good, because my kids don't sit still for very long.

There were six suites, all in a big long row. I think the Peanut Free crowd filled about three of them. Here's a pic of part of our section.

Rockies selfie!

This was our group: myself, hubby, the boys, and my parents.

The Rockies trailed for most of the game, but they managed to make the 9th inning fun. They started the inning trailing 4 to 8 and scored three runs. They got into scoring position again too. The crowd (what was left of it) got really wild--which the boys loved. That was probably the only inning they actually watched all of.

Poppa and Zax put on their Rally Hats.

Unfortunately, they didn't pull it together. The Rockies still lost 7-8.







*sigh*

I wish I could say the evening was without incident, but unfortunately, I can't. A little more than halfway through the game, my children remembered that Coors Field has a playground, and of course they wanted to go. They had played at it without incident last year, so I agreed to let my dad take them for an inning or two. (I did make his eyes go wide when I handed him the bulging bag of epis to take with.)

The boys were fine after they came back from the playground (I made them scrub their hands), and as we exited the ballpark after the game. As soon as we got out, I pulled out the wipes and had everybody scrub off their hands again (especially as we had deviated from the "peanut safe route" in order to visit the restrooms on the way out.)

I had thought we'd had a successful night, but riding the light rail home, Zax started rubbing at his face. I asked him not to touch his face and told him I'd scrub him down more thoroughly when we got home, but I didn't want him getting any possible peanut residue on his face. He rubbed a few more times anyway, and then rubbed his eyes.

At that point I tried to patiently explain how germs and allergens can enter our bodies through our eyes while hoping that nothing was going to happen. However, when we reached the car he reported that his throat felt funny. We dosed him with Benadryl, and fortunately that took care of it.

I'm sure he had peanut residue on him somewhere. He could have picked something up on the way out of the park, but more than likely it happened at the playground. All the other kids playing there had been walking through peanut dust and peanut shells, and my dad later reported that Zax even rolled down some ramps in the playground. That would have easily gotten it on his skin and clothes, and it was a short trip into his body from there. I later found myself explaining mucous membranes to my six-year-old, hoping he would understand the concept of not touching eyes/nose/mouth/ears/etc for next time.

We did have a good time overall, and I wouldn't rule out doing it again. However, I will nix the idea of the playground. The boys will just have to make do with terrorizing the suite when they need to move. Or they can go outside the suite and run up and down the peanut-free hallway leading to it.

Having food allergic kids is a constant learning process, isn't it?

For more information on Peanut Allergy Friendly Rockies games, you can watch this link:
http://colorado.rockies.mlb.com/col/ticketing/peanut_allergy.jsp

Inside a Food Allergy Study

21 lousy milligrams.

That's all the egg protein it took to induce an allergic reaction in my eldest son. It wasn't anaphylactic at that level and was controlled with antihistamines, but I can't help but shake the feeling that this is very allergic. 21 milligrams. That's 3/1000ths of an egg, folks!

Not many people know a specific threshold for themselves or their allergic little ones. The reason we found this out was because of a research study. We enrolled Zax in a study at National Jewish Health in Denver to study a new blood test for food allergies. From what I understand, the hope is that the new blood test will not only be more accurate, but may also predict severity.

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Day 1
It was an interesting process. The first day was a screening visit to make sure he was eligible, get his specific numbers, and take blood samples. They were specifically studying egg, milk, and peanut, and Zax is allergic to two of the three.

We started out by putting a numbing cream on his arm (which takes a while to take effect) and then we talked a lot. They took a medical history and did a scratch test for egg and peanut. I liked the way they recorded the numbers from the scratch test--they traced around his reaction with a fine-tip sharpie, then took a piece of packing tape, placed it over his reaction, pulled it off, and then they had an exact copy of the size and shape of his reaction. Very nice way to remember exactly how things went when they come back to his chart months from now.

His histamine control reacted, as it was supposed to, and so did peanut, but egg failed to show up. Suspecting that something was wrong, though, the doc reapplied the egg prick and reset his timer.

No such luck, egg popped up after all. I almost got my hopes up here, but not too much. I, too, suspected that something was wrong with the test and didn't really think his egg allergy had just disappeared. We were there for the egg, after all. They had met their study quota for peanut participants prior to our learning of the study. We first thought we could be grandfathered in since we were already in the study for egg, but later found out that doing peanut wasn't possible.

After the skin test was complete, they did a blood draw. Despite the EMLA cream, Zax said it still hurt. Poor boy. A previous blood draw had gone fine, but this one was uncomfortable in some way. He was brave anyway!

They took his vitals too, and did pulmonary function tests so they would have a baseline for later.


After his initial screening Zax did two double-blind food challenges. In both cases he ate applesauce seasoned with cinnamon and spiked with either egg protein powder or oat powder (placebo.) Neither we nor the staff knew which day was which until he reacted.

They weren't just interested in whether Zax would react, but also at what dose he would react, so they carefully gave him graduated doses at 15 minute intervals. The doses were as follows (measurements are in milligrams of egg protein powder or oat placebo.)

1, 5, 15, 50, 75, 100, 250, 500, 1000, 1250, 1750, 2250, 2750 = 9,996mg grand total (almost 10 grams if all doses are ingested)

For each day, we were scheduled for about 5 hours. The doses took 3 hours to administer (assuming he got through them all) and then we would hang out for a 2 hour waiting/observation period. If, on the other hand, Zax reacted, we would wait for observation for 2 hours following a reaction requiring Benadryl and 4-6 hours following a reaction requiring epinephrine. So 5 hours was more of a ballpark, it could be as few as 3 or as many as 7-8, depending on reactions, severity, and how far into the challenge he got before reacting.

Day 2

National Jewish has a dedicated Food Challenge Room in the Pediatric Department. This was pretty cool, because it was equipped with all sorts of activities to keep the kids occupied. We brought a backpack of toys and books along to keep Zax busy, but apart from his kitty we didn't even open it on day 2. They had movies, a Wii, toys, and crafts galore (Zax LOVES crafts, so when they called for the craft cart, he was in hog heaven!)

We started the day by getting his vitals again (and he took kitty's vitals) and then the eating began! I had explained what we were doing to Zax beforehand, several times, but we went over it again after his first dose. He wanted to know why we were coming twice so I attempted to explain the purpose of a placebo to a six-year-old. The moment I told him that it protects against him getting worried and thinking he feels a reaction when he doesn't, he pointed to his throat and said it felt a little funny. We reported that to the doctor, who suggested that he take a sip of water to see if it goes away. He did, and then buried himself in crafts, and nothing further came of it. Apparently describing the placebo effect is enough to cause a placebo effect.

There were two other boys in the the Food Challenge room (with their mothers and doctors) because the room was shared. Zax enjoyed playing with the younger of the two, who was challenging peanut for the same study Zax was in. The third boy was doing his one-year challenge for a peanut patch study--and he was getting near-constant attention from the staff. Both of the boys challenging peanut had an IV hookup in their arms so they'd be ready to administer steroids or fluids if necessary, which is hospital procedure for peanut challenge.

Before each new dose, the doctor and nurse checked Zax over, listened to his lungs, had him perform a Peak Flow test, and asked him how he felt and if he had any itchy spots.

After about 8 doses, I started doing math. I'm a numbers person, so I naturally gravitate towards them. I copied down all the doses, added up what Zax had eaten so far, calculated how much egg had been required for Zax to react previously, and thought about what all of that meant.

You see, Zax did a baked egg challenge before starting preschool, which he failed. I'd been told at the time to bake something containing 2 eggs, baked at 350 degrees for 30 minutes, and to bring in 1/12th of it. The nurse then cut the brownie I provided into four equal parts, and we fed them to Zax at 15 minute intervals. Zax felt a little funny after eating the first quarter (1/24th of an egg) but didn't report it because he wanted more chocolate. He no longer wanted any brownie after his second piece (1/12th of an egg cumulative.) If an egg is 6-7,000mg of protein, that meant that he'd started reacting at no more than 291mg, and he called the test quits at 583mg. At the time that I started calculating all of this, he had eaten 996mg of something--egg protein or placebo. I began hoping very fervently that day 2 was egg, because if it was, that would be a very good sign!

When given the option, my kid can cram a lot of crafts
into one day!

He kept eating each successive dose without issue, however, and after he ate a combined dose of more than half an egg (if it was real) I came to the conclusion that he'd been eating placebo. Zax loved the applesauce and eagerly scarfed down each dose without any issues. The room was fairly noisy and boistrous, and it became apparent after a while that all three of the kids were taking placebos that day. A random assignment to be sure, but it was nice to have everybody on the same page.

There was no eating during the test (except for the study doses), but after all doses were taken Zax was allowed to snack on foods that are safe for him. He did so, and we waited out our observation period with more crafts, games, and movies.

I didn't tell Zax that I was certain what he'd eaten was the oat powder. I told him that either it was the placebo or he'd outgrown his egg allergy. He'd approached the challenge with such confidence and enthusiasm that I didn't want to damper that with the expectation that he would definitely react at the next challenge, even though that was fully what I was expecting.

You may have noticed that Zax was wearing his "Eggs are my Nemesis" shirt for the challenges. It seemed fitting. Check out our website for gear like this to protect your little allergic superheroes!

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4th of July weekend only!

Day 3

Zax's second challenge was four days after his first. I reiterated to him that nothing might happen that day, although when taking his first dose he told the nurse he expected it had egg in it. There was one other boy doing our study that day, accompanied by his mom and sister (who had no allergies.) The two did not get along as well, so they did not play together much, although they watched TV together.

Zax selected a craft to do and got down to work. He didn't get very far, though, because a few minutes after his third dose he told me that his throat felt funny, kind of achy/itchy. We reported this to the doctor and nurse right away.

The doc has a sense of humor, which you can see from his
shirt. He said it was a graduation gift from medical school. It says:
Allergy Information:  This shirt contains a Nut

They took his peak flow, listened to him, and asked him questions. Then, just like the previous day, they asked him to take a sip of water to see if it would make it go away. Then they told me that they'd wait a bit longer and see how he's doing before deciding if they'd do the next dose.

After maybe 10-15 extra minutes he said his throat felt mostly better so they gave him his next dose, another 50mg, bringing him to 71 total. I felt certain that the challenge would end there, but after another 15 minutes he said it still felt about the same--not totally gone, but no worse than before. So they gave him dose number five, 75mg, which brought him up to 146mg total.

Just a few minutes after that dose, he said his throat felt worse again, and worse than before. While he'd been hesitant and wanted me to report his symptoms to the doctors previously, this time he boldly told them himself, and announced that he didn't think he should eat any more. They checked him over and still didn't see much in the way of physical symptoms except possibly more stuffiness in his nose (he'd already been stuffy from seasonal allergies because he couldn't take antihistamines prior to the challenges) but everybody agreed that he should stop.

I know what they were doing when they pushed him to five doses from three. My kid had experienced a mild placebo effect on the first day, on the first dose, and as part of their study procedure they have to make sure that a patient is actually experiencing a reaction and not just a tickle in their throat or a placebo reaction. I do get that. But since the feelings never completely went away and then returned more strongly after the next few doses, there's no doubt in my mind that he was feeling a reaction on dose 3, after eating a cumulative 21 lousy milligrams. No doubt. And if he's going to react to 3/1000ths of an egg, I don't feel like he's going to grow out of this anytime soon.

We gave him a meltaway Zyrtec, which greatly surprised me. When the doc suggested it over Benadryl because it wouldn't make him sleepy, I couldn't help but grill him. Is it really as effective? I'd never considered or even heard of using a once-daily antihistamine in place of Benadryl. He said it hasn't been rigorously studied but from what they've seen, liquid or quick-dissolving Zrytec (and possibly Allegra) works as well as Benadryl for mild reactions. Zax was already starting to get drowsy from the reaction, so I decided to give it a shot rather than give him a drug that would make him even more tired.

After about 40 minutes Zax reported that he felt all the way better, but a few minutes later he gulped a bit and said he might throw up. He didn't, but he sat with the throw-up bucket nearby while staring mindlessly at the TV for another half hour or so.

Once he started to perk up, I broke out the consolation prize--a new Lego set. We even found a better use for the throw up bin!

I realized after the fact that I'd been taking pictures through the whole procedure, but I hardly took any while Zax was reacting. Too preoccupied with my child's welfare to think of the camera. For a while he looked really run-down, with bloodshot eyes and circles under them. Once all of that cleared and his behavior perked back to a semblance of normal, I knew he was feeling better.

By the time we left, Zax was basically himself but still a little worn out. It's rough to have an allergic reaction, even if it isn't anaphylactic. Especially if you ate more than you probably should have. He was tired all afternoon and didn't have his normal energy level again until the next morning. I'm happy to report that the next morning wasn't at all affected by the reaction, and he played soccer without a hitch. We had Epis on hand as per doctors orders (which we always do anyway) in the time following the challenge just in case of a biphasic reaction, but fortunately he was fine.


It was weird intentionally inducing an allergic reaction in my son. I was never scared for his life--after all, there's no safer place to have an allergic reaction than in a hospital surrounded by doctors who do this all the time--but I was worried about him, especially going into Day 3. Even though there had always been a chance that he'd react to the first challenge, it somehow felt worse the second time, and probably because I knew that something was going to happen that day. I was doing my best not to pass anticipation or anxiety on to him, and I think I succeeded, but that doesn't mean it was easy.

I am glad, however, that we're contributing to the advancement of food allergy science. This new blood test may someday replace RAST testing, or it may fizzle and die off, but we're helping determine if it works, and that's a worthwhile achievement.

There was one silver lining to Zax's reaction, other than the obvious contribution to medical science. I quiz him regularly on what he's supposed to do during an allergic reaction, and I introduce different scenarios for him to think through. A few months before this study, I asked him if he remembered what an allergic reaction felt like and he said no, not really. Then he suggested that maybe he should try something he's allergic to again so he can remember.

I am a fan of knowing what you're dealing with. When I first read the story of B.J. Hom's death, I couldn't get past the detail that he asked his father for cough drops because his throat hurt. He didn't know he was having an allergic reaction, and so neither did anyone else in his family. I was stunned than anyone with food allergies could make it to the age of 18 without knowing what an allergic reaction felt like--because my own childhood was riddled with accidental exposures that, among other things, didn't allow me to forget that telltale sensation. So the fact that someone could die of an allergic reaction because they didn't even recognize what was happening scared me. A lot.

It scared me so much that it has colored the way I parent. Every time one of my kids has had an allergic reaction, I've asked them to think carefully about how they feel and to remember it, and if they ever feel that way again, they're to tell an adult right away. Because really, none of the words we use to describe an allergic reaction quite does it justice. They're close, and good guides to be sure, but it's a unique feeling that lacks an appropriate descriptor.

So there was Zax, at the wise old age of 6, admitting that he didn't remember an allergic reaction (it had been a few years) and suggesting that he needed a reminder. This study certainly gave him that reminder, and there was no safer place to do it. And if that experience can keep my child safer, then it was time well spent.

Flu Shots

This will be short today.  As I mentioned Wednesday, Zax was hospitalized for the flu. He's much better now, and has his normal energy level back except for bedtime.  I caught the flu myself--even though everyone entering his room was required to wear masks and gloves, I was already doomed (after laying in bed with him before realizing he needed to go to the hospital, carrying him face-to-face from the parking garage to the ER, holding him close while he got an IV and an epinephrine injection...)

Click the link to the left, or in the "Allergy Superheroes"
tab at the top, to order one of these for your little
peanut-allergic superhero!

My doc ordered me Tamiflu right away, just based on my personal exposure, so I think I'm ducking the worst of it (not to mention I had whatever partial immunity I was still supposed to get from my flu shot), but I'm still tired from launching our Peanut Allergy Slap Bracelets and taking care of kids who are full of energy (one of whom was supposed to be in school, but can't be because he might still be contagious.)

So I'm just going to share more pictures from Zax's stay in the hospital, and spread the message to GET A FLU SHOT! Even this year, when they say the virus has mutated, it can still offer partial immunity to most people.  We tend to write off the flu as being a minor ailment, but I've now experienced firsthand how scary it can be.  Don't assume it will be minor for you or your children.  Get immunized!  The flu is not worth the risk!

In the ER, getting breathing treatments

After treatments made him feel a little better

Next morning, still not much interest in anything

Using the "Shaky shaky," a device that vibrated his
chest to loosen congestion

Finally allowed to take a walk!

Feeling much better by the end, and discovering just how much
fun it is to play with a hospital bed