Category Archives: Testing

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 gage 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…

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!