So this is actually happening – peanut challenge

Bubba's SPT as a baby

Bubba’s SPT as a baby

Bubba first tested positive for a peanut allergy at ten months old. She had never been exposed to or ingested peanuts and in fact still hasn’t. Our house went peanut-free when she was still an infant and we have been diligent about her exposures to the ‘outside world’. Our gym childcare is food-free, our preschool went nut-free for Bubba (and others), and we were always proactive about asking friends at parties to please keep nuts out of reach from Bubba’s toddler hands. Keeping Bubba safe from peanuts was (relatively) easy when she was so small, but she starts Kindergarten in less than two months and a whole big world is about to open up for her: a classroom and cafeteria that will have nut products, potential playdates and Daisy meetings with unsupervised snacking, field trips and class parties. Of course I will still be involved in keeping her safe by educating others, checking ingredient labels, and providing her own food. The reality is she won’t be as protected as she has been however. The reality is that I will have to rely on many other adults and Bubba herself in ways that I never have had to before.

IMG_9437I’m proud of the allergy education I have given Bubba. I’ve shown her foods in the grocery that aren’t safe, pointed out different dishes at parties, compared candy bags so she can see how tricky it can be to know if something is safe just by its appearance. We’ve drilled into her “if we can’t read it, we don’t eat it” so that she knows ingredients have to be read, by an adult, every time. We’ve encouraged her to tell others about her allergies and to say “no thank you” when offered food. We have a plethora of children’s books talking about food allergies so she can understand what happens to her body when she has an allergic reaction. Bubba knows to speak up quickly when her body feels funny or itchy. But Bubba is still LITTLE. Really, really little. Kids are curious and test boundaries and get confused and are so trusting of adults, who may or may not know what is best. As much as I’d like to think otherwise, Bubba is no smarter and no more mature than any other Kindergartener. For her safety, we’ll have to make decisions about her ability to ride a bus (where kids sometimes secretly snack), whether she needs to sit at a peanut-free table in the cafeteria, whether she can participate in class parties and field trips without me present. Of course peanuts are just one of her many food allergies, but the prevalence of peanuts in children’s food products and the prolific nature of peanut ‘facility’ warnings make peanuts a bigger concern for us.

So what if she weren’t allergic?

A food allergy is defined by an allergic reaction upon ingesting a food – not by a positive skin prick or blood test. It’s possible to test positive to an allergen, and yet safely eat the food. A food challenge, where the food is eaten under medical supervision in a controlled environment is the ‘gold standard’ of allergy testing. The decision to truly test an allergy in this way, is one made with great care and with the advice of allergists. Our decision to move forward with a peanut challenge was based on factors very specific to Bubba: (1) She has successfully passed many food challenges (six!) and we feel she is mature enough to be able to handle a potential failure, (2) Her IgE numbers have gone down over the years. Her most recent level was 1.85 which puts her at a Class II allergy, (3) I am comfortable and experienced in treating anaphylaxis after having given Bubba epinephrine numerous times, (4) our allergist’s office is a five minute drive from the hospital, (5) we believe the potential benefits (increased freedom, reduced anxiety, additional safe foods) outweigh the risk.

So what are her chances? Well, unfortunately not 100%. One study of preschool children with positive peanut allergy tests but no previous peanut exposure found that 50% of those children could safely eat peanuts. The children most likely to pass had an IgE of less than 2 kU/L (like Bubba) and a wheal size of <7mm on a skin prick test. Only 5% of children who met both criteria failed the peanut challenge. Bubba’s last wheal size was 13mm so I can’t give her those kind of odds. But there’s a chance and for us that offers us hope. Wish us luck…

Making Easter Special – Allergy-Friendly Chocolate Giveaway

Kids love treats. They also love holidays and any reason to celebrate. It’s their joy that often makes our holidays so special. We all delight in seeing a child light up. Most allergy parents have found a variety of ways to make holidays both special and safe. That learning curve can be huge however. I know I have had my fair share of tear-filled birthday mornings because I couldn’t make a cake look cute (or even normal for that matter). I’ve been crushed for Bubba when swapping out unsafe Valentine’s candy with bright pink wrappers for her plain ‘ole gummi bears or safe chocolate chips. I’ve navigated the holiday party mine fields of allergen-laden trays and baskets – hardly outdone by the defrosted safe cupcake I brought from home. So like most allergy parents, I upped my game. I found better egg substitutes and expanded my baking repertoire. I stockpiled more safe chocolate bars, pinned more recipes, and expanded our traditions to include more food-free fun. I have also found special, unique, and truly festive treats so Bubba can share in the magic of the holidays. Amanda’s Own Confections was my ultimate find. Their products are free of Top 8 allergens and even made on dedicated equipment. Bubba has had their chocolate Advent calendar, a variety of themed Halloween and Christmas chocolates, and just recently, the most adorable and extravagant chocolate Easter bunnies and egg.

It’s so rare for our allergy kiddos to have treats that look and taste every bit as exciting as their friends’. To see Bubba bubble over with glee made my day. Bubba’s reality is that her treats never look like everyone else’s. She was incredulous at the size of and decorations on her Easter chocolates. Word for word, this was Bubba’s reaction: “Mom it’s so pretty! Is this really for me?? How do they make this delicious chocolate? I love the ribbons! Did you see the ribbons?!?” Amanda’s Own chocolate tastes like the real-deal. It is every bit as creamy and decadent as the milk-based version. So be warned, the rest of the family will be fighting your kid for a bite.

And because your allergy-kiddo’s joy is also my joy, I am partnering with Amanda’s Own for an Easter chocolate give-away. Yay! Simply share my Facebook post or retweet me on Twitter by March 2, 2016 to enter. A winner from each social media site with be announced and contacted on March 3, 2016. Amanda’s Own will ship you an Easter treat in time for the holiday.

Baked-Milk: A Slice of Cake Away from Hope

In case you read no further, say a little prayer or cross your fingers for Bubba this week, will you? She has her biggest food challenge to date this week – baked milk.

Bubba's first dairy-free frozen yogurt at Erin McKenna's Bakery NYC

Bubba’s first dairy-free frozen yogurt at Erin McKenna’s Bakery NYC

In case you’re unfamiliar with the nomenclature here is a brief overview:

Baked Milk
Milk, like many foods, is comprised of multiple proteins. The main proteins are whey and casein. Whey proteins are not heat stable, meaning they break down under high heat, whereas casein proteins retain their allergenic properties even when heated. You can be allergic to one or both. Seventy to eighty percent of milk-allergic children are able to tolerate baked-milk. The inclusion of baked-milk into a child’s diet has nutritional, social, and potentially allergenic benefits. Studies show that children who can tolerate baked-milk and include it in their diets are more likely to outgrow their entire milk allergy and outgrow it at an earlier age. So how do you know if a food challenge for baked-milk might be appropriate?

Predicting Baked-Milk Challenge Outcomes
The decision to undergo a challenge should be under the supervision and with the advice of an allergist. Factors may include your child’s age, history of reactions, IgE blood levels, and skin prick test (SPT) results. For an extended discussion on the details of specificity v. sensitivity in the various testing methods for cow’s milk allergy, see this article. Interestingly, one study identified milk SPT wheal size as more predictive than casein-specific SPT wheal size or milk IgE levels. Those researchers suggested a milk wheal size of <12mm would be an appropriate indicator for clinical food challenge readiness. Other researchers demonstrated the utility of casein-specific IgE levels in predicting challenge outcomes. Specifically, a casein IgE level of <4.5 equals a 95% chance of passing and >20.2 IgE level equals a 95% chance of failure. In the past year, Bubba has dropped from a casein IgE of 5.41 down to 3.67. Finally, here is one additional article discussing readiness for an oral food challenge and contraindications.

The work of Dr. Nowak-Wegrzyn (and others) demonstrates: those children who can tolerate baked milk are more likely to outgrow their entire milk allergy and those who regularly ingest it are likely to do so at an accelerated rate (compared to those who strictly avoid all milk products). The immunological changes these children experience are similar to those kids with spontaneous resolution and who undergo milk oral immunotherapy (OIT). At-home baked-milk ‘therapy’ is easily implemented and is far less likely to be frought with the potential adverse effects of OIT.

Milk has been Bubba’s biggest kryptonite. She has had more anaphylactic reactions to it than to any of her other allergens. It was her first anaphylactic reaction (at 15mo) and her most recent (October 2014). If milk touches Bubba’s skin, she gets contact hives which thankfully resolve with simple skin washing. If she ingests milk, Bubba vomits immediately and violently. She continues vomiting even after the food has left her body. Her throat starts to swell, making her cough and her voice grow hoarse. Thank God for epinephrine.

10541449_10153092673565194_3111246704968924710_oMilk is everywhere, all the time. Pizza parties, ice cream parlors, grills laced with butter, powdery cheese dust snacks, squeeze tubes of yogurt, toddler sippy-cups, breads, chocolate, etc. It is her, and therefore my, nemesis. It sounds funny to say, but if Bubba could outgrow her milk allergy someday I feel like she would start to blend into the ever-growing group of kids with a nut allergy instead of existing in a daunting food-allergy world all her own. It seems like most kids these days have some friend with a peanut allergy. It is sadly becoming the new norm. So cross your fingers for her, for hope, and for progress in this long, long journey.

Allergy-Friendly Advent Calendars and Christmas Books

Today marks the first day of the Advent season and for many kids the first day of opening a special treat or receiving a special toy in an advent calendar. Last year we ordered dairy-free chocolate advent calendars from Amanda’s Own Confections and loved them. The calendars looked exactly like every calendar most allergy-free families buy for their kids at their local grocery store or pharmacy. Many allergy families long for these small, seemingly trivial things to have a sense of normalcy. I know that was the case for me last year. This year I was too late and Amanda’s Own was sold out. Oooopps! So it’s a DIY kind of year.

I made our own advent chocolates using dairy-free chocolate (melted with a tiny dollop of coconut oil), an adorable candy mold I found on Amazon, and a handy squeeze bottle.

I wrapped the chocolates in small squares of foil and slipped them in the pouches of an old felt advent calendar we happened to have on hand (lucky for this procrastinating Mama!). The chocolates are delicious, festive, and cheap! If I do say so myself.

I found some adorable non-food DIY advent calendar ideas on Pinterest as well. A pin from Double the Batch was my favorite because it was such an exhaustive list of adorable ideas.

Some time ago I complied a list of every children’s allergy book I could find on the market. I have them all listed here. But I thought I would share a couple specific holiday/winter titles:

We have the No Peanuts for Santa book and Bubba loves it. It is a cute tale about Santa’s nut-allergic reindeer with an added bonus of being a great way to introduce the names of all the various tree nuts to a young child.

Beanfield’s Bean & Rice Chips

IMG_7138Beans only recently became a safe food for Bubba so I hadn’t ever bothered to buy Beanfield’s Bean & Rice Chips until I had the chance to stop by their table at the Food Allergy Bloggers Conference last month. They were delicious! I stayed to chat awhile so I could keep eating (my weight in chips) and discovered that they were certified gluten-free, made from non-GMO products, produced in a nut-free facility, and free of all major allergens. Not bad, huh? Although corn is safe for us, I know it can be a challenging allergen for others and these chips are even corn-free. They can compete head-to-head against your favorite chip for flavor but will easily win on nutrition. They have way more fiber, more protein, and less fat than anything else out there. There are a bunch of flavors – my personal favorite is the Pico de Gallo but the flavor is too grown-up for my kiddos. They like the Sea Salt the best. After I sent the folks at Beanfield’s an email telling them how much I loved their chips and to thank them for coming to the conference, they sent me a huge box of yummy chips for my family to share. How nice is that?!


How to hold your child like an Epi-Pen Ninja

I recently attended the Food Allergy Bloggers Conference and attended an amazing workshop with Dr. Julie Brown. I learned a lot about epinephrine (post to follow) and saw photos of the dramatic and unfortunate injuries that can result when a child is not properly restrained when administering epinephrine. In the photos below, you can see how we restrain Bubba when we administer epinephrine. We call it the Ninja Hold. It’s something we practice so that we’re comfortable, but also so that Bubba understands what is happening to her in the event she needs her Epi-Pen. I like the hold because it prevents Bubba from seeing the Epi-Pen injection and because of how firmly I can restrain her.

As you can see in the photos, Bubba sits between my legs. I am right-handed so I use my left hand to reach across her body and firmly hold her upper right arm. I place my right leg over her legs. I pull her arm across her body to twist her torso away from the injection site. I then use my right hand to press and click the Epi-pen into her right thigh. Hold for a count of ten.

I hope the hold works well for you also. Don’t forget to hold your Epi-Pen blue to sky, orange tip to thigh. That was another helpful Dr. Brown reminder!

Bubba’s annual allergy testing – things are looking up!

IMG_6826Bubba’s allergy testing began when she was less than a year old. For years her testing was done hodge-podge style as a result of mystery reactions or in our quest for a better allergist. Each new doctor had different insights, new concerns, and ordered their own testing. I hear from many readers that their allergist (or often their pediatrician) says you can not test for food allergies until a certain age. Though there is no magic number, there are inherent risks in testing (such as over or under inclusiveness). For us, early testing was successful and also extremely helpful. That said, if I had to do it over again I would have chosen to limit blood testing (no more than annually) and to have requested that all her allergens be tested each time. In her four years, Bubba has had five blood tests and nine skin prick tests. We have tested a total of sixty-five allergens, monitored her Vitamin D levels, and followed her total IgE. There is a lot to keep track of for this allergy mama!

So where are we now?

The idea that there is no ‘cure’ for food allergies, a potentially life-threatening condition, is a tough pill for any allergy parent to swallow and I am no exception. I am don’t-take-no-for-an-answer, I-can-talk-my-way-into-anything human. After spending years watching Bubba’s allergen list grow it has been extremely gratifying to watch her IgE numbers and wheal measurements drop. Each food challenge that we’re able to schedule and pass feels like we’re accomplishing something. And indeed we are. Bubba has passed challenges for soy, pineapple, chickpea, and baked egg. Her newfound tolerance for baked egg is of special significance because of the research demonstrating that ingesting baked egg (when safe) can accelerate resolution of the entire egg allergy. After only a few months of eating baked egg ‘therapy’ muffins, Bubba has been cleared for all home-baked cakes, cupcakes, and breads made with egg. The guidance we were given was no more than two eggs per recipe and a minimum one cup of flour per egg ratio. Soon we will progress to food with shorter cooking times – cookies, brownies, frozen pancakes/waffles, and finally homemade pancakes/waffles. Bubba was also cleared for pastas so we’ll be experimenting with homemade dairy-free ravioli soon. Yum!

This brave girl got a big treat post-testing.

This brave girl got a big treat post-testing.

Additionally, Bubba’s most recent testing shows she has likely outgrown her allergies to cumin, mustard, and nearly all legumes. WOOT WOOT! We have been approved to expose her at home to these foods and will be scheduling a food challenge for green pea. This is HUGE! Who cares about a little ‘ole green pea? Well for starters, Bubba had two anaphylactic reactions to them. Also, those little suckers appear in nearly every vegan cheese and tons of other dairy and egg alternative products. Daiya here we come!

What’s next?

With so much success it is hard to not want more. I have been eager to find out if a baked milk challenge might be appropriate for Bubba. Like egg, milk contains different proteins, some of which are not heat stable. We have been watching Bubba’s IgE number to casein (the heat stable milk protein) drop and it recently fell below the ‘optimal cutoff point’ according to Dr. Anna Nowak-Wegrzyn’s study. Additionally, on her most recent skin prick test the wheal for milk was smaller than the wheal for egg. One study suggests SPT results are most accurate in predicting outcomes of a baked milk challenge.

After meeting with a new allergist at the Children’s Hospital of Philadelphia, we got approval to challenge baked milk. Wish us luck! We will be doing the challenge in a hospital setting because it will be a higher-risk challenge. If Bubba passes we will begin baked milk ‘therapy’ cupcakes and hopefully progress to products with lower cooking times/temperatures just like we did for egg.

We will continue to stringently avoid peanuts, tree nuts, shellfish, sesame, and a few other allergens which have shown their remarkable staying power.

Auvi-Q Recall

AAAAAAAAAAAUUUUUUUGGGGGHHHHHH. That is the sound of an allergy mom two days before Halloween when she discovers all four sets of her daughter’s epinephrine auto-injectors have been recalled.


Sanofi just issued a nationwide recall for basically all active Auvi-Q devices. As you may remember, these are our favorite auto-injectors. They are smaller, use auditory instructions, and have a shorter injection administration time.

If you use an Auvi-Q please check your device to see if the recall applies:

This includes lot number 2299596 through 3037230, which expire March 2016 through December 2016. The products have been found to potentially have inaccurate dosage delivery.

If your device was recalled, please contact your doctor to obtain a prescription for an alternate epinephrine auto-injector (Epi-Pen or Adrenaclick). Sanofi will reimburse you for any out-of-pocket expenses incurred in replacing your device.

Epinephrine has saved Bubba’s life four times. When used quickly and correctly it has the power to stop a life-threatening allergic reaction. It’s basically a miracle drug. Bubba travels with it where ever she goes. She also has a home set, a school set, and a set at her grandparents. I have already called our doctor for a new prescription and will be heading out to the pharmacy now. Stay safe and contact your doctor if you have any questions!

She’s beginning to get it

As negative developmental milestones go, this one is harder on the mamas than the kiddos.

IMG_6668Bubba is finally ‘getting’ her allergies and she seems to be taking it better than me. We went to a Trunk or Treat event at Big Girl’s elementary school tonight. All three kids were dressed in costumes and excited to trick or treat in the school’s parking lot. Right before turning them loose, I reminded Bubba not to eat anything without approval from us and that we would play ‘switch witch’ with any unsafe candy when we got home. She nodded happily and ran ahead to get started. At the first car she asked for my help in picking some safe candy. Chocolates, no. Nerds, no. Laffy Taffy and Jolly Ranchers….I read the labels…safe! At the next car she again turned and asked for help. All the candy was chocolate. I knelt down and said “none of it is safe, but that’s okay. You can just take a piece, say thank you, and Mama will trade you for a safe piece at home.” She told me she didn’t want any candy that was unsafe. Well, it’s hard to argue with that. We skipped the bowl and headed to the next car. That one, along with the next several, didn’t have any safe options. Each time I told her, “it’s okay Buddy. Just say thank you, grab one piece, and we’ll swap it.” Nope. She didn’t want it in her bag.

You could tell it was finally sinking in. Bubba wasn’t smiling any more, she was walking more slowly, and she approached each new bowl with ever increasing caution. “Mama none of it is safe. They don’t have any safe chocolate? Why are all the candies bad?” I knelt down again and explained that most chocolate has cow’s milk in it and lots of candy has nuts or eggs. But that’s okay. Why? Because we will always have lots and lots of safe options for her. In fact, I had some in my bag. We could play switch witch right now and she could have fun trick or treating. Right?

Bubba continued walking the parking lot with us but the enthusiasm was gone. Even when we found some cars with safe candy options, she didn’t seem excited. I was crushed. My mama eyes brimmed with tears at her new found awareness. Given her 35 food allergies, the reality is that most food in the outside world is not safe for her. I believe my job as Bubba’s mom is to help steel her against these disappointments, to offer perspective, to help her understand this reality but to not dwell on it. That’s what my head says when my heart screams THIS IS JUST NOT FAIR. I kept up my internal temper tantrum as we moved on from trick or treating. Bubba danced in front of the DJ and walked in the costume parade. Bubba was over any candy disappointment. She was happy to eat popcorn I brought from home and got really excited when she discovered all the safe candy in my purse.

When we got home I sat down with Bubba to ask what happened tonight. Why didn’t she want to trick or treat and swap later? Was she scared to touch the candy? Was she mad she couldn’t eat it? Did she just figure why bother if she couldn’t eat it? Yup. She figured why bother. I asked if she felt left out because so much candy wasn’t safe for her. Nope. I asked how she wanted to handle Halloween night. I explained it would probably be similar, that lots of houses would have unsafe candy, but there might be a few safe items. She told me she would just take the safe stuff. That works for me. Instead of the switch witch game I anticipated, we’ll just make a safe candy goody bag for her to return home to.

So Bubba finally ‘gets’ it. Maybe not completely. Or maybe she gets it more than I do.

Annual update – long post

IMG_6285Every year we make a big trip to the Jaffe Food Allergy Institute at Mt. Sinai Hospital in New York City. We have been able to find good local allergists – who are the most practical to see for food challenges, pressing issues, and the endless school and camp form updates, but the chance to pick the brain once a year of one of the most prominent pediatric food allergists in the country, Dr. Scott Sicherer, is invaluable. We use these appointments to ask big questions: what should our next food challenges be, what food trials would Bubba be best suited for, what 504 accommodations should we seek when Bubba starts public school next year, what could be causing Bubba’s mystery hives, are we meeting her nutritional needs, etc. These appointments are vital to us as sources of knowledge and also for allergy-mama anxiety. Food allergies are hard. You want to fix it, but there really is no ‘fix’. Avoidance and preparedness for accidental exposure are the only real protocols. But all mamas want to fix things. It’s really really hard to just accept that your kid got the short stick. I can satisfy some of that drive with these appointments. They help me feel that I am doing everything I possibly can for my kid.

This year’s appointment was a mixed bag as usual. We added a couple new allergies (salmon and birch) which is always a bummer. Bubba had recently gotten hives on two different afternoons after I fed her a salmon dip. I suspected the salmon but she had previously tested negative for it. At the appointment we did a small series of skin-prick tests and she came back positive. I know losing salmon isn’t the end of the world, especially in the diet of a four-year-old, but adding anything to our avoidance list is very frustrating.

The addition of a birch allergy is interesting. Seasonal allergies typically don’t appear in children until ages 4-6. Bubba had previously tested negative for birch, but she was only two at the time. A birch allergy can cause oral reactions to foods that are cross-reactive. This may explain Bubba’s transient oral reactions to celery, carrots, bell peppers, raw tomatoes, and fennel. I’m hoping it will also explain away cumin, but that is less likely given her higher IgE number. A birch allergy can also cause a cross-reaction with peanut. The peanut protein Ara h 8 is so similar to birch pollen that those with a birch pollen allergy will often test positive to peanut and may have mild pollen-like allergic reactions upon ingesting peanut. That is why component testing is so important. We know, through component testing, that Bubba has a ‘true’ peanut allergy that is more often associated with anaphylaxis. But I now have big questions about whether Bubba is allergic to other legumes or if these are merely cross-reactive with birch (or peanut). She outgrew soy, eats black beans, and passed a food challenge for chick peas. She still has white beans, kidney beans, fava beans, and lima beans on her avoidance list. Imagine if we could strike four more? I also wonder if new and emerging seasonal allergies could explain her eczema flare ups and mystery hives last spring, over the summer, and this fall. Lots to think about.

The other bummer was that Dr. Sicherer doesn’t think Bubba would be likely to pass a baked milk challenge and therefore he wouldn’t support her doing one, absent much lower IgE numbers on a current blood test. Sigh. I was really hoping to start her on baked milk therapy, similar to what we’re doing with egg.

Positives from the appointment included the chance to consult again with a nutritionalist who gave us a great recommendation for a calcium and Vitamin D supplement, encouragement to give Bubba a daily probiotic (we chose this one from Mercola), and some very exciting negative skin-prick test results! Bubba tested negative for lentil and green pea. We will follow up with blood testing. If Bubba is negative for pea and can pass a food challenge, that would be HUGE. Pea protein appears in a bizzilion vegan foods that would otherwise be great milk and egg substitutes for Bubba. She had two anaphylactic reactions to peas before the age of two and hasn’t been exposed since. Fingers crossed!

Because our dream is to get Bubba in a clinical trial that can offer her some level of desensitization to some (any!) of her allergens, it’s important to us that Bubba always associates these trips with fun, adventure, and a chance to have special time with me. Although we were at Mt. Sinai for a couple hours and had some testing, the bulk of her day was spent riding trains, visiting playgrounds, riding a carousel, and at the zoo. She even got to eat out at a restaurant called Chick Pea after I cleared it ahead of time. A pretty exciting day for a four-year-old!