Tricks and Treats

Since Bryan is only 3 years old, we haven't had any discussions yet about why we don't go trick-or-treating. My plan is to tell him that it just isn't safe because so many people give out candy with milk or eggs or peanuts in it. For now, he gets to dress up and give away (Bryan-safe) candy at the door, and when he gets older, we will probably throw Halloween parties for him and his friends. Am I being naive to think that will work? Probably- but he has surprised me so far with how mature he is about his allergies. So here's hoping...

In the meantime, here is a list of milk-, egg-, and peanut-free treats. As always, please check the label before you eat anything- fun-size products sometimes have different ingredients from regular-size. Hope you have a fun, safe, and allergic-reaction-free Halloween!

• Skittles
• Starburst (except fruit-and-creme variety)
• Sour Patch Kids (just the regular ones)
• Divvies Caramel Popcorn or Caramel-Chocolate Popcorn (available at http://www.divvies.com/; they also have Bryan-safe chocolate!)
• Raisins (which the neighborhood kids will LOVE...)
  

Surprisingly Bryan-Safe

As much as I would love to say that I carefully and lovingly prepare every morsel of food that my entire family eats, I am definitely a member of the Convenience Food Fan Club. Now, convenience foods are definitely more of a challenge for the food-allergic child. Beyond the simple fact that milk, eggs, and/or peanuts are used in a lot of basic cooking (cookies, cakes, breads, pastas and sauces, etc.), you also have to worry about cross-contamination. Just how carefully did they clean those machines between the peanut-butter crackers and the regular crackers? And while food labels have gotten much easier to read (all food products manufactured in the US are now required to use the "simple" words for allergens somewhere on the package), there isn't a lot of consistency as far as what "Manufactured on equipment that also processes..." versus "Manufactured in a plant that also processes..." means.

That said, I have managed to find a number of convenience foods that are, in fact, Bryan-safe. In this case, I am not referring to the wonderful specialty items that are designed specifically to be milk-, egg-, and peanut-free. (Thank you Divvies Bakery!) I'm talking about regular snack foods that you find at the grocery store. Pretzels are generally safe, as well as saltine crackers. The list below, however, has foods that are "Surprisingly Bryan-Safe"- you don't expect them to be safe because, well, they taste too good. =) Based on e-mails and conversations with the manufacturers, I have found that Pillsbury, Kraft, and Nabisco are very good about their labeling procedures. As always, please check ingredient labels before eating- manufacturers do change their formulas from time to time!

• Frosted Strawberry (and Blueberry and Cherry) Pop-Tarts
• Barnum's Animal Crackers
• Honey-Maid Graham Crackers
• Oreo Thin Crisps (100 Calorie Packs)
• Lorna Doone Shortbread (Cookies and 100 Calorie Packs)
• Cinnamon and/or Honey Teddy Grahams
• Ritz Crackers (that's right, I said Ritz Crackers)
• Wheat Thins
• Pillsbury Reduced Fat Crescent Rolls (the kind from the can)
• Pillsbury French Bread (again, from a can)
• Pillsbury Refrigerated Pie Crusts
• Kraft Jet-Puffed Marshmallows (NOT Creme)
• Bisquick mix (of course, use soymilk and/or other substitutes in recipes!)

Happy eating!

An unwanted anniversary

It was 3 years ago today that Bryan had his first (and hopefully, only) anaphylactic reaction. I certainly don't want to or try to re-live the experience, but seeing this date on the calendar makes everything rush back. (I'm not going to recount it here, though- I already did that in a previous post.) I suspect it will always be kind of an "unwanted anniversary" for me- very important in my life, even though I wish it hadn't happened. Luckily, Bryan was young enough that he probably won't remember what the reaction felt like. And I would be perfectly happy if he could go through life without ever having to find that out.

Pre-School Prep School

We decided that it was time to let Bryan out of his little bubble this fall and start Pre-School. Sort of like with the airlines, I did a LOT of research before making our decision. First, I narrowed it down to schools/centers that were accredited by the National Association for the Education of Young Children (NAEYC). My reasoning for this was twofold. First, NAEYC accreditation is an indicator of high quality among early childhood centers. The voluntary accreditation process is fairly rigorous. They look at many different factors, from curriculum to communication with families, from the physical environment to staff preparation. As a former early childhood teacher, I put NAEYC accreditation high on my priority list. Additionally, I reasoned that because the accreditation process is so meticulous, if a center were willing to go through the accreditation process and maintain those high standards, hopefully that would indicate they would be committed to working with us on Bryan's food allergies.

After I narrowed down the list of centers, I spent a lot of time on the phone. I spoke with the director of each center, first discussing the severity of Bryan's allergies, then covering their policies and procedures for working with children with food allergies. Among the topics I asked about were:

• Previous experience working with food-allergic children
• Food preparation (some centers provide food; others require children to bring their lunches) and mealtime procedures (where would he sit, how closely would he be supervised)
• Medical procedures, including where an Epi-Pen and/or Benadryl would be kept, who would administer it, what training teachers and staff had, emergency procedures, and what kind of discretion teachers had to administer medication on an "as needed" basis

After my marathon telephone sessions were done, I ended up with one center that seemed to be a good fit. I made an appointment to tour the center and meet the director. During the tour, we discussed much of the same information that we had covered over the phone, but this time I was able to see everything in person. It also allowed me to start establishing the relationship with the staff that will be a big component of keeping Bryan safe at school. After the visit, my husband and I talked about everything for several days, and we finally decided that this school would be a good option for Bryan. We went ahead and enrolled him to start in the middle of September.

Note to parents of food-allergic children- In addition to the usual medical forms that needed to be completed by the pediatrician, I asked our allergist for a Food Allergy Action Plan. This form has a complete list of Bryan's food allergies, as well as the steps that should be taken if a reaction were to occur. Ours describes each of the possible symptoms of a reaction, and indicates whether Benadryl or Epi-Pen should be administered. I will try to scan ours and post it so that you can see an example.

I still plan to meet with Bryan's teacher in person before he starts (she wasn't there when I visited). Otherwise, I think that we are prepared to take this next big step. Now whether or not I'm actually READY is a completely different question...

(Allergy) Test Review Session

The two basic types of allergy tests out there- skin prick tests, and blood tests. For the skin prick test, a small scratch is made on the skin, and is then exposed to the allergen in question. If the person is allergic, the scratch will then swell, sort of like a mosquito bite. The main test that our allergist conducts at this point is the blood test, which in our case is the CAP-RAST. Blood is drawn, and the levels of IgE antibodies for various allergens are measured. As I mentioned in the previous post, the IgE antibody level does not indicate "how" allergic the patient is to the allergen- it just indicates how likely it is that the patient is allergic. The "cutoff" level of IgE antibody that determines whether or not you are allergic varies with the allergen. For instance: for eggs, an IgE antibody level of 7 kilo-units per liter (kU/L) indicates a high probability of allergic reaction (95% of patients with this IgE antibody level for eggs will have a reaction). The "cutoff" level for milk, however, is 15 kU/L, and for peanuts is 14 kU/L. This doesn't mean that a patient with an IgE antibody level below these threshholds is not allergic- unfortunately, a reaction can occur pretty much any time the IgE antibody level is higher than zero. On the other hand, a positive test result doesn't guarantee that an allergic reaction will occur either. It just means that the possibility for a reaction is there. So basically, allergy testing can help you determine what foods might cause a reaction (that you therefore should avoid, just in case), but can't determine whether the reaction will actually occur or how severe that reaction could be. (Confused yet? This is why you should always talk to your doctor if you have concerns!)

So on to Bryan's test results. His IgE antibody levels are still extremely elevated for milk, eggs, and peanuts (>100 kU/L for each). They are also slightly elevated for almonds, cashews, hazelnuts, and sesame. Our game plan is to continue avoiding milk, eggs, peanuts, tree nuts, shellfish (as a precaution), and sesame, and re-test in about 12 months. And we'll continue the process until his IgE antibody levels drop low enough that it might appear that he has "outgrown" an allergy or two. At that point, we will look at skin testing, and if those come back negative, it will be time to consider the oral food challenge. But more on that later.

Check back with me in 12 months...

A question I get a lot from well-meaning friends and relatives is “How are Bryan’s food allergies doing- are they getting any better?” It’s a question that I find considerate and frustrating at the same time. Considerate because it’s nice that they are concerned for Bryan’s health. Frustrating because I really can’t answer the question very well. Food allergies unfortunately aren’t something that you can see day-to-day (or even month-to-month) improvement on. Since we very strictly avoid all of his allergens (as well as a few others for good measure), just because he hasn’t had a reaction in the last few months doesn’t necessarily mean his condition is improving- it just means that he hasn’t had any eggs, milk, or peanuts in that time. The only way we can tell for sure how his allergies are doing is through testing, and we only see his allergist every 12 months. And even then, tests can’t necessarily tell us “how” allergic he is (how severe his reactions could be)- they just tell us how likely he is to be allergic to the various allergens.

All of that to say- Bryan had an appointment with his allergist yesterday. He is still allergic to milk, eggs, and peanuts. (See the next post for more details.) Check back with me in 12 months...

Leaving on a jet plane

We just completed another food allergy milestone- our first plane flight. While the planning was somewhat stressful (my fear of the unknown more than anything else), the flight itself went really smoothly. We did stay with family, so we didn't have to worry about the "eating out" aspect of vacationing that is a bigger concern for most food-allergic families. However, here are some things that might be helpful to other parents trying to plan their first flight for a food-allergic child:

• We contacted three airlines- Frontier, Southwest, and United. Frontier unfortunately was unable to accommodate our concerns, as they have recently begun selling peanut-containing snacks on their flights. Southwest said they would make an announcement prior to the flight to ask passengers to voluntarily refrain from peanuts, and they would not serve peanuts within a "buffer zone" of 2-3 rows. They also requested that we fly the first flight of the day, as all planes are cleaned overnight. United said that they do not serve any peanut-containing snacks, but that they couldn't guarantee a peanut-free flight, as passengers are allowed to bring whatever they wish on board. United was the best option for us, all things considered. (None of the airlines were able to make any accommodations for the milk or egg allergies, which we weren't really expecting anyway.) However, always contact the airlines yourself, just in case their policies change.


• When you make your plans, always contact customer service, either to make the reservation with an agent, or afterwards to inform them of the food allergy. Even if it doesn't affect their food service plans, you will want them to make a note of the allergy on your reservation.


• Bring your own snacks for on the plane! This is really the only way you know for sure that what your child eats is safe.


• Carry your EpiPen with you. You are allowed to bring it on board, as long as you declare it with security. I put it in the security bin, separate from my "3-1-1" bag, and informed the security agent that I was carrying it. Make sure that you have the prescription information, including the patient's name and doctor's name. You may also do this with liquid Benadryl or other medications you may need to bring- just be sure to declare it separately from your "3-1-1" bag. I also got a letter from our allergist stating that Bryan has food allergies and that we needed to carry the EpiPen on board with us, just to be sure.


• Carry disinfecting wipes- we had some for cleaning surfaces, as well as hand wipes. We wiped down the seat belts, as well as the trays, as soon as we got to our seats.

Some helpful websites for making travel plans with food allergies include:

Food Allergy and Anaphylaxis Network- http://www.foodallergy.org/Advocacy/airlines.html
Transportation Security Administration- http://www.tsa.gov/travelers/airtravel/specialneeds/