Food Allergies Get A Mascot This Halloween

Our kids spend most of October in their Halloween costumes. Sometimes, they pretend to be their characters (Transformers, this year) and other times, they pretend they are trick-or-treating. We make pumpkin-shaped, peanut/tree nut/milk/egg-free cookies. They paint pumpkins. (No carving them, after seeing what they did to Charlie’s arms.) They draw ghosts and jack-o’-lanterns, bring us spooky books to read, and look for Halloween decorations when we walk around the neighborhood. As Max says: “Halloween? Thumbs up.”

Image courtesy: FARE

Image courtesy: FARE

They hardly mention candy, though. Sure, they get loads of it when they hit the streets on Halloween, but the treats they look forward to are plastic spider rings, pencils, tiny rubber snakes, and other random goodies. That’s what they get when they turn in their bags of trick-or-treat candy at the end of the night. They also get a few candies that we have personally bought and vetted, but it’s not the highlight of the evening. The kids have a good time and Charlie is safe. It rocks.

The-Teal-Pumpkin-Project-5

Image courtesy: FARE

This year, we’re adding a new tradition, thanks to FARE and FACET. We’re painting a pumpkin teal and putting out a sign that will let parents know we have non-food treats available. It will also help get the word out about food allergies. We only hand out non-food treats, but many families who are taking part in the Teal Pumpkin Project will be handing out candy and offering non-food treats to trick-or-treaters who request them.

What makes the teal pumpkin useful is that when we see one, we’ll know that we can ask for non-food treats. That means that more of the treats Charlie and Max collect will be treats they can enjoy. It adds to the fun for them and doesn’t change anything for kids who don’t have food allergies – especially at homes that offer candy and non-food treats (from separate bowls).

I really like this idea and I’m glad it’s getting so much love from the press. When it comes to educating people about food allergies,there’s still a long way to go, so some of the comments on these news pieces are a little disheartening, but most people seem to think the teal pumpkin project is a great plan. Hopefully, those who think it’s an attack on an American tradition will see that no kids are being excluded – they’re being included. Everybody gets to have good, safe, fun.

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Food Allergy Challenge: Peanuts

This kid tolerates peanut butter.

This kid tolerates peanut butter.

Charlie tolerated peanut butter at his food challenge today. No, he shouldn’t eat it again. But, it’s not lethal to him. MK and I are so happy, we could pop.

After being off his allergy meds for several days, Charlie walked into the doctor’s office, hopped onto the little bench, and downed 10 consecutively larger portions of peanut butter, starting with a portion so small he couldn’t even taste it, and ending with a sizable bite. We waited 10 minutes between each portion, and I (and the nurses and doctor) monitored him closely. The whole thing lasted an hour and a half, but it felt like 20 minutes to me.

Charlie’s face didn’t display any hives during the test, but his arm got a bit red at the inside elbow and a tiny hive appeared on the other arm. The doctor also skin- tested him for environmental stuff (he’s allergic to mold) and tree nuts. He’s allergic to everything except hazelnut. (We initially thought that opened the door to Nutella, but it contains whey.)

At this point, the doc says, the peanut butter appears to exacerbate Charlie’s eczema. The doctor thinks Charlie will outgrow peanut by his next food challenge, which is in the Spring. But, for now, we’re happy just knowing that he’s not likely to experience anaphylaxis from accidentally eating something that has peanuts in it.

Still on the anaphylaxis list are egg (confirmed), dairy (confirmed), and tree nut (possibly). Knocking peanuts off the list is a huge win, and gives us hope that the others will be outgrown, too.

For Crying Out Loud

Charlie had a severe reaction at dinner last night. His face started looking like ground beef, distinct hives popped up all over his body simultaneously, and he started to cough. We used the EpiPen and then drove him to the ER, where they kept him for a long time before sending us off with the usual steroid.

Like last time, we don’t know what caused the reaction. We don’t keep any foods in the house that he’s allergic too, and all of the things he ate for dinner were seemingly safe. The peaches and veggies he eats all the time. The chicken nuggets are processed, but he’s eaten nuggets from that bag before. I know that doesn’t rule out cross-contamination, but still, geez.

As usual, the day after an anaphylaxis incident is tough on the whole family. Charlie is wild and disobedient. MK and I are exhausted from both the emotional drain and the lack of sleep that comes with getting up all night to check on him – not to mention the time spent analyzing what went wrong, and worrying.

The last reaction needing the EpiPen was in late April. We almost made it 4 months. Sigh.

Allergic Living Spreads Awareness with Six Steps Poster

This week is Food Allergy Awareness Week (FAAW) and Allergic Living magazine is one of the organizations leading the awareness charge. Today I spotted a neat new poster from the magazine that gives some easy-to-remember advice for spotting a reaction, treating it with epinephrine, and getting the patient safely to a hospital.

Six Steps That Save Lives Poster

Allergic Living’s new Six Steps That Save Lives Poster. Image Credit: Allergic Living

One of the things that struck me about the poster is that it notes that feeling faint and having a drop in blood pressure could be the only symptom of anaphylaxis. Charlie had a reaction like that once: he had some minor redness on his face and watery eyes, but because he gets redness anyway (and I’d never seen him get watery eyes), I wasn’t sure it was anaphylaxis until he started to look like he was feeling faint.

Anyway, this is great information. I’ve seen people posting online with the same question that I’ve grappled with: what is a black-and-white rule for identifying anaphylaxis? The answer is that there is no black and white rule, but knowing the symptoms will help you make the judgement call. I like that the poster reminds you to use the epinephrine injector (EpiPen or Auvi-Q, these days) even if you’re not 100% sure it’s a reaction. The word I’ve heard from multiple doctors is that getting an epi injection won’t kill (or even injure) most people, even if they’re not having an allergic reaction after all.

The EpiPen Saves The Day

epipen

The orange tip is extended to prevent anyone from getting an unexpected poke from the used EpiPen.

Charlie had an anaphylactic reaction on Sunday afternoon. He was playing in the back yard for more than an hour (with no food), when he suddenly developed a super-runny nose and hives on his face. By the time we reached the house to give him Benadryl, his face looked much worse, so we all piled in the car.

And then he started to cough.

Charlie coughing when he’s having a reaction is a miserable thing to hear. It’s the most futile, thick cough ever. Add that to the massive hives that popped up on his arms and wrists, and we knew the 10-minute drive to the hospital was going to be too long. We stopped the car, MK administered the EpiPen to Charlie, and we got going again. And then, as he always does after getting epi, Charlie started to look better. Within minutes, the cough disappeared entirely. His face started to look like his face again. And although the hives remained for quite a while, they were dramatically reduced in size just minutes after the shot. The ER kept us for  a couple hours, and then we were back to our house.

And now Charlie wakes up crying multiple times every night.

And Max is acting out and clearly stressed.

And we’re trying to figure what the hell caused Charlie to go ana in the middle of the yard. No food. So pollen? It was a very high pollen day, and it was windy. The doctor drew Charlie’s blood and is testing for pollen now. He also recommended that Charlie avoid the birch we planted in our yard a couple years ago. The beautiful river birch that Charlie, more than the rest of us, really loves. It will go to a new home.

So, now we’re trying to figure out this new, major wrinkle. Charlie’s upcoming peanut challenge for May has been pushed until after the summer.

* Interesting note: We had nine injectors (eight EpiPens and one Auvi-Q) on hand. Some in MK’s purse, three in a pack I carry on my belt, and some in a fanny pack we refer to as the “epi kit.” It’s always with us.

FARE’s Updated Walk For Food Allergy Website

newfaresite

The new FARE Walk for Food Allergy site is polished and easy to use.


My family really enjoyed the FAAN walk here in Lincoln, Neb. last year. It was a great chance to raise money for an important food allergy organization and it was also an opportunity to raise awareness of food allergies in Lincoln. And, it was nice to see that we are not alone – there are many, many families in our city going through the same thing. Now, there’s exciting news about this year’s walks, which will take place across the country. FARE, (formerly FAAN & FAI), now has a new website. I’ve checked it out, and I love it.

Food Allergy T-shirts

Charlie and Max at last year’s walk, sporting their T-shirts.

Lincoln’s walk isn’t up on the site yet, but FARE’s midwest regional development coordinator just sent out an email pegging the date as October 19th, at Holmes Lake Park. That’s where it was held last year, and it’s a great, scenic spot with plenty of parking.

Everyone meets up at a big tent and checks out the latest from Mylan, (maker of EpiPen and EpiPen Jr) and there are plenty of activities for the kids (balloon animals, face-painting, etc.). The activities are followed by the walk itself. If you’re thinking of going, I recommend raising money via the FARE walk site. If you’re not planning to go, I’d like to point out that last year Darth Vader showed up.

Food Allergy Fiasco: The Valentine’s Day Party

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When you have food allergies, you are surrounded by poison. Everywhere you look, there are treats and meals that will, should you eat even a crumb of them, kill you over the space of maybe twenty minutes. It makes Valentine’s Day tricky, to say the least.

vday1

Charlie isn’t old enough for pre-school, but I got a preview of what’s ahead when his four-year-old brother showed me the bag of Valentines he’d collected at preschool yesterday. I sent Max off to preschool with some paper Valentines, not realizing that nearly every other kid was headed there with candy. It’s no problem for Max, as he has no food allergies, but I was caught off-guard when I showed up at the end of school (with Charlie) and he asked to bring the candy home. I explained that he could only save the non-food treats, and he understood. He was disappointed, of course, but Max takes a lot of responsibility for Charlie’s allergies. He tells people we meet about them and watches what Charlie eats, commenting on whether he thinks its safe.

vday2I was relieved to see that a few parents sent their kids with non-food treats. Now that I know what Valentine’s Day looks like at school, I’ll send some better non-food treats next time.

What will it be like for Charlie when he starts going to school? I don’t know. I wouldn’t want him around these temptations. It’s one thing to avoid milk or peanut butter. It’s another to not reach into your own Valentine bag and pull out the chocolate kiss – to not touch any of the candy because any of it could have been cross-contaminated. That’s a tough spot to be in when you’re a kid.

While I’m on the topic of temptation, I always get a kick out of the people who post comments online (often under news stories about how schools handle food allergies) about how candy bars with peanuts should be allowed in schools, and that FAKs (food allergy kids) should just consider those lethal snacks to be learning experiences. Really?  That’s a very high-stakes way to teach the kid self control that he’s not old enough to possess yet. Resist the temptation to taste the candy that everyone around you is eating, that other kids are encouraging you to eat and telling you that it’s perfectly safe. Sure! I’ll bet that most of the people who make those comments aren’t nearly so disciplined, themselves. I’d LOVE to know the BMI of some of those…people.