Category Archives: Allergy Education

Bubba’s Allergy Update

Starting School and Failing Her Peanut Challenge
It’s been been quite some time since I posted. Ironically it was one of the busiest allergy periods we’ve ever had. The end of the summer marked Bubba finally being diagnosed with environmental allergies (basically the entire outdoors) which provided a much needed explanation for her random bouts of hives, terrible sleep, and general itchiness. Thankfully a simple daily antihistamine seems to be making her much more comfortable. Summer was also my time to prepare for Bubba to enter elementary school. Traditionally, allergy parents meet with school administrators to create a 504 plan for any necessary accommodations. We chose a private school. Federal civil rights protections for students with disabilities (504 plans) apply to public schools and to many private schools (those that receive federal funds). My understanding is that the standard used in evaluating the level of accommodation required under the law differs between public and private schools. I did not put any further research into the issue however because I was so happy with my meetings with Bubba’s school administrators. The principal, nurse, and her teacher were all so knowledgeable, supportive, and flexible. They seemed open to any accommodation we thought necessary and committed to doing whatever was needed to keep Bubba safe and included. If I felt my concerns weren’t take seriously I would have pursued whether we could obtain a formal 504 plan.

But what about the ‘allergy table’ issue? As I discussed in a prior post, we decided to do an oral food challenge to peanuts to determine what extra school safety precautions were necessary. The good news was that it took a lot of peanut for Bubba to react. This helped ease some of ours fears about Bubba accidentally being exposed to small amounts of peanut on the bus, in the lunchroom, or on the playground. The bad news was that once Bubba started to react it was bad. An anaphylactic reaction is, of course, much less frightening in an allergist’s office with epinephrine at the ready. But it still sucks. About two hours into her food challenge, Bubba started to complain about stomach pain. I took her to the bathroom in case it was gas or just a mild GI issue. Within minutes she was on the floor in the fetal position crying because her belly hurt so badly. I brought her back to the exam room and we called for the allergist. Bubba began coughing with increasing frequency and severity until her voice was gone. This happened very quickly. Bubba cried when she saw that she was going to have to get a shot of epinephrine, but gave a relived ‘oh’ when she felt the thin syringe needle as compared to the higher gauge Epi-Pen she’s had before. Less than three minutes later Bubba’s voice was back, bellyache was gone, and she was asking for the iPad. God Bless epinephrine. About 20 minutes later we thought the reaction had passed so I stepped into the hallway to call my husband and fill him in. My mother-in-law was with us so she stayed in the room. By the time I came back Bubba’s torso and groin were covered in enormous hives. We called for the doctor and she gave another shot of epinephrine. This time my trooper didn’t even flinch. I promise this kid is way tougher than me. And certainly more motivated by stickers.

The Egg Challenge
After doing Bubba’s annual allergy testing this fall (skin prick only this time) we decided to schedule food challenges for both eggs and milk. Her wheal size (reaction to the test) decreased significantly for both. She had been eating baked egg for almost two years at least 3 times a week. Bubba was uncharacteristically nervous for her egg challenge. She was worried about failing again. Stickers were enough to get her to the allergist’s office, but it took a LOT of persuading to try her first bite of egg. She wasn’t crazy about the taste, but said it tasted like “chicken.” She passed her egg challenge which is AMAZING. I wish my dad could have been around to hear about it. He passed away a few years ago having remained egg-allergic his entire life. We have tried feeding Bubba all sorts of yummy egg dishes at home including scrambles, cinnamon french-toast, hard boiled eggs, and meatballs. She will try them and hasn’t had any reactions but she dislikes all of them. Except mayonnaise, which she likes on everything. That’s my girl.

Upcoming Milk Challenge
How could you not want to continue that success?? Well, testing for milk makes us WAY more nervous. Or maybe just pessimistic. Milk has been Bubba’s nemesis since she was an infant. She got eczema when I drank milk while breast-feeding. Her first Epi-Pen was after drinking milk in a sippy cup (mistakenly filled my her Number One Mom). Her second and third and fourth Epi-Pens were all for milk too. Once was because a cooking spray had ‘butter flavoring’ which I did not understand to mean containing dairy. Another time was because she accidentally had a bite of a s’more containing Hershey chocolate. She had epic vomiting episodes after yogurt touched her tongue, after chocolate milk touched her tongue (relatedly – paramedics in Disney are super fast), and after she stole a sippy cup from her baby brother. She’s gotten hives from getting milk on her skin. She’s gotten an itchy throat from inhaling cheese dust during snack time at camp. In short, milk has not been her friend. So why challenge it, you ask? Well her IgE level for casein (the allergenic milk protein that does not break down when baked) has gone down, her skin prick wheal size has gone down, and she’s been successfully eating baked milk for a year. I believe in my heart and soul she will outgrow her milk allergy. And when she does I can’t wait to see the world open up in front of her. I want that for her as soon as possible. So instead of waiting till we’re 95% certain she’ll pass, we’re comfortable challenging milk when we’re ‘mostly’ sure. That doesn’t mean we won’t be nervous as heck though. Wish us luck next week.

We already feel tremendously blessed to have gone from 37 or so allergies down to peanuts, tree nuts, milk, sesame, and shellfish.


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…

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.

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!

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!

Back to School Food-Allergy Anxiety

The start of a new school year can be stressful for food allergy parents. Heck it can be stressful for all parents. New teachers, new rules, a new environment. We’re lucky that Bubba is back at her same preschool. One that has been extremely accommodating, supportive, and eager to learn when necessary. Her school is nut-free, birthday celebrations are food-free, and she brings her own snacks so the risk of her actually ingesting an unsafe food is reasonably minimal. The beginning of a relationship with a new teacher is always a delicate one however. My job is to advocate for my child. To do this most effectively, I need to create an ally while also being firm in what precautions must be followed to keep my kid safe. I think too often food allergy parents can mentally prepare themselves for a ‘fight’ before the school year has even begun. That can be based on fear or on prior fights they have actually endured. I think the best approach is to assume a teacher is the person ready to love and protect your child as much as you do. Teachers are often underpaid and under appreciated. They usually entered the profession because they love children. If you can approach your relationship with your child’s new teacher from this perspective, all that’s needed is information. A teacher doesn’t need to be reprimanded if they didn’t follow protocol – they need more information about the potential consequences of an unsafe environment. If your child felt excluded because of an activity or treat in the classroom – the teacher needs to know about those feelings. Your job as an advocate is to provide information and offer whatever support you can. Maybe the teacher could use another set of eyes during lunch time and needs you to push for an aide with the administration. Perhaps other families are having trouble remembering a new no-nut policy and you could draft a letter to go out to parents. Are other kids in the classroom making your child feel different? Maybe you could donate a book about food allergies to your school’s library.

When I met with Bubba’s teacher at the beginning of the year, I discovered that she had been trained on the Epi-pen, but not the Auvi-Q. This is the epinephrine auto-injector that we’ll keep at school so she needs to know how to use it. I offered a quick training at orientation, but then approached the school directors about when we can do a school-wide training. I said I would be happy to donate our training devices as well as our expired Auvi-Qs so everyone can get a chance to practice hands-on. I also wrote a letter to Bubba’s teacher explaining a bit more about her allergies and reactions. I hoped the information would be easier to digest when not busy trying to speak with all the other new parents.

Bubba is contact allergic to milk and eggs, but we have rarely had issues. We keep milk and eggs in our home, but thanks to diligent cleaning, she has only had small contact reactions a few times (all of which were resolved with prompt skin washing). I was a bit nervous on the first day of school when Bubba arrived in the classroom and the morning preschool class was finishing lunch. One little boy was finishing his Pirate’s Booty and the thought of cheese dust all over everything made me anxious. But, I know I informed Bubba’s teacher about contact issues and how to treat them. I also know we discussed starting the school day with hand washing. Bubba would be in a separate area of the classroom until lunch was cleaned up. So I chose to take a deep breath and trust that Bubba would be safe. That can be very hard to do as an allergy parent. Letting go, even a little bit, and trusting in the safety net you have built around your child.


Second day of school.

Of course there are challenges to this professed zen-like approach. Bubba had a couple small itchy bumps on her arm after her first day and told me she thought she had hives at school. It could have been random skin issues, including contact dermatitis. Regardless, we had a big talk about always telling a grown-up if she feels funny or itchy and why that’s so important. After the second day of school, she broke out in hives all down the backs of her legs. I tried washing her off, but she began crying from being so itchy so I quickly gave her Benadryl. What does the anxious food-allergy mom think? Did her bare legs touch a chair or surface covered in milk residue? Is this a contact reaction? I will need to discuss washing down all surfaces at school after children have eaten. What does the trying-my-very-best-to-be-rational food-allergy mom think? If the hives were from school, that’s weird that she didn’t get them at school. Contact hives are usually fairly quick. Did she eat anything new? Hmmmm. She tried a new homemade salmon dip both days. She hasn’t eaten a lot of salmon before – maybe only a few bites a couple times. Has she been tested for salmon? Oh boy. Is she fighting a bug? Could these be viral hives? Could they be idiopathic – hives for no apparent reason? Our allergist would probably say that might be as likely as anything. Sometimes there is no apparent cause for hives.

Whatever the cause, I will need to have a rational, reasonable, and positive discussion with Bubba’s school. A little more education about food residue and the potential for contact reactions could help prevent problems in the future for her and/or for another allergic kiddo who is more sensitive. The teachers and administrators are on my team. We all want to keep this little one safe.

Should you feed your baby peanuts?

You may have read about the recent peanut allergy study suggesting that early exposure to peanuts is beneficial for reducing the incidence of an allergy. I saw the same headlines and shared the links on social media. This is exciting stuff and the more people that have access to this information, the better. At least you’d think so. More on that below.

So the study. The idea of feeding your children peanuts earlier in life rather than purposely delaying exposure to prevent a peanut allergy is not so much ‘groundbreaking’ as it is a direct counter to the years of advice parents were given. As my mother will tell you, the old approach was to delay introducing major allergens to kids who might be predisposed to food allergies due family history. Maybe the body would be better able to digest the proteins or maybe any ‘allergy’ would simply be outgrown by the time first exposure came. So was the thinking.

Well, it turns out that was wrong. That said, there should be two major take-aways from the study. (A) not every baby should be fed peanuts and (B) there is not a direct link between my daughter’s peanut allergy and her lack of exposure. At least not one that this study found.

Let’s start with the study. “Investigators tested the hypothesis that regularly eating foods containing peanut – if started during within the first year of life – could elicit a protective immune response rather than an allergic reaction.” The infants were chosen for the study because they were considered high risk for developing a peanut allergy because they had severe eczema* and/or an egg allergy. Participants were excluded if they showed a significant sensitization to peanut as measured by skin prick test (SPT). So Bubba would have been excluded. She showed signs of a severe peanut allergy upon her very first SPT at six months old. These researchers didn’t study early peanut exposure to kids with an allergy, aka don’t tell me my kid wouldn’t have a peanut allergy if I had just fed her peanuts.

But here is what they did find: “Early (peanut) consumption is effective not only in high-risk infants who show no sensitivity to peanuts early on, but it is also effective in infants who already demonstrate peanut sensitivity.” That is AWESOME. Anything that reduces the number of kids with a food allergy is just plain rad.

So what’s the harm in mainstream media carrying this story? People like this guy. Too many people who know nothing about allergies now feel like they know what has caused the outbreak in peanut allergies – overprotective parents. And that’s not only wrong, it’s dangerous. Not every baby should be fed peanuts. If you have a family history of food allergies, a baby with eczema, or a child who has had an allergic reaction to any food, please discuss the best course of action with your pediatrician and/or an allergist.

So, parent to parent…what would I say if you told me you’re scared to feed your kid peanuts for the first time because of kids like Bubba? I would tell you I understand the fear. I would tell you there is no harm in talking to your doctor. I would ask about eczema and family history. If it all sounds clear? I would tell you that current research says you should feed your baby peanuts sooner rather than later.

Want to read the study for yourself? You can read more here and the trial details are available on TrialShare. I also recommend reading both Robyn O’Brien’s piece about the limitations of the study and FARE’s response.

*Note – please consider taking your infant to an allergist if they have eczema that is not resolving. 37% of infants with moderate to severe eczema have food allergies. Here is another article discussing the link between eczema and allergies. Bubba had moderate to severe eczema and we took it seriously. The rest is history.

What your kid’s treat-free Valentine’s Day means to me

IMG_3985We feel so lucky that Bubba attends an extremely supportive preschool. Before Bubba, they were not nut-free, families sent in birthday treats to school, most holidays involved food, and the school spring fair included a bake sale. They have evolved into a very allergy-aware school with a number of polices that help keep Bubba (and her many food allergic classmates) safe. The school is now nut-free and no outside treats are allowed. Including on Valentine’s Day.

I’m not sure non-allergy families really understand the positive impact of removing the traditional candy-filled valentines from the classroom. So I thought I’d share.

I would probably keep Bubba home from school on Valentine’s Day if treats were permitted. There is no way I could pretend the day would not involve extreme risk. What would people send in? Would someone forget the no-nut policy? Even if they didn’t, surely some of the treats would be unsafe. Bubba is allergic to milk, eggs, and numerous other foods besides nuts. What if kids started eating the treats in the classroom? Could my three-year-old really be expected to turn down candy out of sight of her parents? What if she snuck something? All it would take is one bite. Best case scenario, my kid would vomit, struggle to breathe, get a shot of epinephrine, have to go to the hospital, and strike fear into her parents’ hearts, her teachers’ hearts, and scare all her tiny classmates. BEST case scenario.

But let’s pretend I was feeling *lucky* and was somehow confident that my kid would not ingest a single bite of candy while at school. That kind of super-human willpower I must confess is something I do not possess as a grown woman (sugar = kryptonite). But let’s pretend.

So my daughter would exchange sweet colorful candy-filled valentines with all her favorite friends. She would know that all the food they gave her could make her very very sick. (That’s the only way this pretend game works – she has to know the danger in order to not eat the candy) Why would they do that? How do I explain that to a preschooler? She would come home and I would have to take away all the treats and valentines she got. From her friends. Would I eat them? Would her sister? Would I throw them out? Is there a scenario here that is not sad?

My kid has years ahead of her to learn that the world is not always fair. For her to learn that she will carry her own unique burdens in this life as we all do. As she gets older she can be trusted to turn down unsafe foods. And will know that we’ll always make something equally yummy for her.

But for now, especially when she is so young, I am so grateful that the lesson she is learning this Valentine’s Day is that those around her make sacrifices to keep everyone safe. To keep everyone included. Thank you, non-allergy families, for adjusting to this new reality with us. For trying your best to be understanding. And for sharing the love this Valentine’s Day.

IMG_1014 IMG_1007

Book Review: Patty’s Secret

Written by Leneille Moon

Patty’s Secret: A Tale About Living with Food Allergies
is the story of a pig who is nervous to start school and tell others about her food allergies. It highlights some of the anxieties and fears children with food allergies have – how to tell others, how to be around kids eating their allergens, and how to turn down an unsafe snack or treat. Tough stuff for our little ones! The book takes a slightly more serious tone than other allergy books. When Patty knowingly takes a bite of an unsafe snack, she suffers an allergic reaction. Patty’s teacher administers her Epi-Pen and she feels better. The author leaves out the next crucial step in appropriate medical care – a trip to the hospital. However, as long as you discuss the importance of this with caregivers and your child, I think this omission is okay. The author used that post-reaction moment for Patty to be able to hear from her friends that they would not have laughed at her allergies. I think the broader message of the book – the importance of telling others about your allergies – is an important one. Patty’s Secret would be a great book for a food allergic child to share with her class. It could speak ‘for’ her, help share some of her silent fears, and open the dialogue with classmates about acceptance.

I think the book would pair greatly with FARE’s Be A Pal program which helps teach students how to keep their food allergic friends safe. Print a free Be A Pal poster here and include it with a Patty’s Secret book donation to your child’s school.

Latest Skin Testing

I’ve posted about the basics of allergy testing – why you should test, the various tests available, and their limitations. We first tested Bubba via skin prick around 6-months-old. She’s had around six skin prick tests since then, usually to try to determine if a ‘spicy mouth’ reaction to a food was an allergic reaction or just a benign toddler ‘thing’ to a strong flavor or distasteful new food. Other times it was to determine if she was allergic to other similar foods. For example, after Bubba reacted violently to sesame seeds we decide to test for a few other seeds before introducing them to her.

Before. So Chill.

Before. So Chill.

Today we tested Bubba for some of her known allergens, either because they hadn’t been skin tested in years, or because they had only been tested via blood. Also, we tested for a few unlikely outliers for the reasons described above. Allergy testing is a necessary evil. But I can tell you there are better ways to spend an afternoon.

Bubba was a champ. At least compared to me who needed to cry to Hubs about it at the end of the day (whilst drinking a glass of chardonnay). She was tested for 22 foods plus 2 controls. So 24 pricks. On her tiny. Little. Back. She laid on her belly. I had a movie playing on the iPad. I pressed my face into hers and held her arms. I’m not sure I needed to. Bubba laid still. She didn’t thrash. But she did. Scream. Her. Bloody. Heart. Out. I almost wished she had fought. Because her bravery just breaks my heart more.

So I am drinking chardonnay. Because it is very hard to separate yourself as a Mama from your Littles when they are in pain.

Tree nuts upper left, peanut mid-back, milk barely noticeable upper-right.

Tree nuts upper left, peanut mid-back, milk barely noticeable upper-right.

This hurts me to look at.

This hurts me to look at.

While we waited for Bubba’s skin to react she watched her movie, hollered about being SO SCRATCHY I NEED TO TEAR MY SKIN OFF, and I blowed on her skin and murmured at her. Mind you Bubba is fully over it now. I’m pretty sure she was over it by the time we were back in the car and she was eating her chocolate lollipop. But I am still trying to sort through the results. She tested Class IV (the highest) for peanut, cashew, hazelnut, pistachio, walnut, sesame seed, crab, clam, milk, and kiwi. She tested Class II for pecan, shrimp, oyster, scallops, lobster, and pineapple. Negative for celery, fennel, anise, and coriander (paranoid allergy-mom seed-suspicions). I don’t feel like there should be any shockers here, but I was a bit shaken nonetheless. In particular because Bubba has had anaphylactic reactions to milk multiple times and her milk wheal (hive) was barely noticeable next to her tree nut and peanut wheals. Bubba has never been exposed to tree nuts or peanuts. So I guess I came out of testing more scared for the future.

*It is important to note that skin prick testing has a low false negative, but high false positive results. It also provides no predictive ability on the likelihood of anaphylaxis.