Saturday, April 10, 2021

A Few Last Words

Hi! If you’re visiting this page, you’ve probably noticed I stopped updating this blog a few years ago. Life became very complicated as I went through the “sandwich generation” phase of my life, lost both parents to forms of dementia, and moved with my husband to Colorado. Even though I'm not actively updating this Food Allergy Feast blog now, I’m keeping it up and running, because people are still finding many of the blog posts helpful.

A quick update: My son, now in his early 20s and at college, successfully underwent OIT for both peanuts and hazelnuts while he was in junior high. However, by the time he got to college, he was so sick of eating peanuts and hazelnuts every day (which he hated) that he finally opted to quit the OIT maintenance. This meant his allergies returned just as strong as ever, and he is now back to full avoidance. For him, avoidance was easier than daily maintenance with two foods he detested, and it was a conscious decision on his part.

So my recommendation is: If you’re contemplating OIT, consider the life-long commitment (at least for now), and whether you or your child has the personality that can commit to it. Some do, some don’t. Every person is unique and must make their own decision. For our family, we’re back to avoiding all products with nuts or nut contamination. We’ve been living that way for two decades now, so it’s just our normal routine. We hope your family’s path is safe, smooth, and workable for you.

Meanwhile, I hope you find helpful information on this blog. While I am no longer maintaining this food allergy blog, I am actively blogging about writing on my website, Please hop over there to visit me, to learn about writing craft and the writer’s life, and to see where I’ll be speaking or to join my bimonthly newsletter. See you there!

Be safe,


Saturday, October 31, 2015

Allergy-Free Halloween Candy Round-Up 2015

By Kelley Lindberg

Go Teal! The teal pumpkin means we
have non-food treats available!
Every year I hit the stores looking for Halloween candy, and I share a list of common candies and the allergens they list. This year, I have been burning the candle at both ends and in the middle and haven’t had a chance to do that. But I’m going to post last year’s list, because I don’t usually see much variation year to year, so last year’s list will at least give you a starting point as you help your little trick-or-treaters sort through their candy loot.

If you still need to find candies free from all of the Top 8 allergens or free from corn, Target had a large supply of YumEarth Gummy Bears, Gummy Worms, and Lollipops yesterday when I was there (each $3.14 bag contains 10 individually wrapped packets). Dollar Tree always has a surprising amount of safe “icky” choices, like gummy skeletons and lollipops shaped like skulls, so if you’re looking for something fun and gross to put on top of cupcakes, for example, try Dollar Tree. They also carry the best peanut-free and tree nut-free candy corn I’ve found, from Crystal Bay. (I think Crystal Bay candy corn tastes better than Brach’s, anyway!)


Large companies use multiple factories. That means the same candy may be produced in different places, with different allergens present. So CHECK LABELS on every single piece of candy. Wonka is one of the worst companies for producing the same candy in different packages containing different allergen warnings, but they are one of the best at individually labeling their candies so you can verify its safety before every bite. A few candies may have changed their ingredients and moved to other places in my list from last year -- a good reminder to check old favorites. When in doubt, call the manufacturer for clarification (most list a phone number right on their package).

First I’ll list candies that don’t list corn as an ingredient (because there aren’t very many of them). Then I’ll list the candies and treats that do contain corn, but are free from some or all of the Top 8 allergens (peanuts, tree nuts, milk, egg, soy, wheat, fish, shellfish).

By the way, EVERYTHING on this entire list is nut-free and peanut-free. That's where I started, then I broke them down by the other allergens. I hope it helps simplify your Halloween!

Corn-free as well as free from Top 8:
YumEarth is at Target, and
this year they're even cheaper!
  • Bob’s Sweet Stripes Soft Mint Candies (red & white peppermints) (Sam’s Club)
  • Cotton Candy (Parade brand, Sam’s Club, 8 tubs per package)
  • Cotton Candy in Candy Corn and Boo-Berry flavors (Dollar Tree)
  • Cotton Candy, Hello Kitty (Dollar Tree)
  • YumEarth Gummy Bears and Gummy Worms (in Target!)
  • YumEarth Organic Pops (in Target!)

Everything from here on down contains corn ingredients:

Free from Top 8 (Wheat, Peanut, Tree Nut, Milk, Egg, Soy, Fish, Shellfish):
  • Baby Bottle Pops (Sam’s Club)
  • Betty Crocker Halloween Fruit Snacks
  • Bubble Babies Gum Balls (contains coconut, Dollar Tree)
  • Candy Jewelry (Dollar Tree)
  • Dots
  • Dum-Dums
  • Giant Lollipop (Dollar Tree)
  • Grave Gummies (contains coconut) (Dollar Tree)
  • Gummy Body Parts (contains coconut oil) (Dollar Tree – coffins and bags) [Note: 2 years ago, 
  • Walmart sold Frankford Candy Body Parts that contained peanuts, nuts, milk, soy, beef, and corn, so read company name and ingredients carefully]
  • Gummy Turtle Power Candy Pizza (contains beef gelatin, Dollar Tree)
  • Halloween Pops (contain gelatin, Dollar Tree)
  • Haribo Gummy Bears (contains coconut)
  • Hello Kitty Family Favorites Candy Mix (Dollar Tree)
  • Hot Tamales
  • Hubba Bubba bubble gum
  • Jelly Belly trick-or-treat-sized packets of jelly beans (Target)
  • Jolly Rancher
  • Life Savers
  • Life Savers Lollipops
  • Life Savers Gummies (contains gelatin, possibly pork-derived, although I can’t verify)
  • Market Pantry Spooky Shapes fruit snacks (Target – contains pork gelatin)
  • Mike & Ike
  • Pixy Stix, regular and giant (Sam’s Club carries a package of 50 Giant Pixy Stix)
  • Push Pops
  • Ring Pops
  • Skittles
  • Skulls & Bones Hard Candy (Dollar Tree)
  • Smarties
  • Sour Patch Kids (but be careful—the Sour Patch Twists contain wheat, so read labels carefully)
  • Spiderman Villains Candy Sticks (contains beef gelatin) (Dollar Tree)
  • Spongebob Gummy Krabby Patties (beef gelatin) (Dollar Tree)
  • Spooky Lollipop Rings (Dollar Tree)
  • Starbursts
  • Swedish Fish
  • Tic Tacs
  • Trolli Sour Brite Crawlers (gummi worms) (Sam’s Club – contains gelatin)

Contains Soy or Soy Warning (but free from other 7 top allergens):
  • Bon Bon Boom Lollipops (Dollard Tree)
  • Cry Baby Extra Sour Bubble Gum (Dollar Tree)
  • Hubba Bubba Bubble Tape
  • Jolly Rancher Crunch ‘n’ Chew (last year, these had soy listed, but I didn’t find any this year, so I can’t verify ingredients. Call the company at 800-468-1714)
  • Jolly Rancher Fruit Chews (last year, these had soy listed, but I didn’t find any this year, so I can’t verify ingredients. Call the company at 800-468-1714)
  • Jolly Rancher Lollipops (last year, these had soy listed, but I didn’t find any this year, so I can’t verify ingredients. Call the company at 800-468-1714)
  • Laffy Taffy
  • Laffy Taffy Ropes (Sam’s Club)
  • Lollipop Skulls (Dollar Tree)
  • Market Pantry Candy Corn Flavored Kettle-Cooked Popcorn (Target)
  • Scary Eyeballs Bubble Gum (Dollar Tree)
  • SweeTarts Chews (check every individual Wonka candy label because ingredients vary by assortment, and SweeTarts GUMMIES contain a warning for peanuts, tree nuts, milk, soy, and wheat!!!)
  • Gum: Dentyne, Trident, Orbit, Eclipse, Wrigley’s (Doublemint, Winterfresh, Big Red, Juicy Fruit, Spearmint, etc.)

Contains Wheat or Wheat warning (but free from other 7 top allergens):
  • Red Vines
  • Scooby-Doo Sour Straws (beef) (Dollar Tree)
  • Sour Punch Twists
  • Twizzler’s Pull ‘n’ Peel (these don’t list soy, although regular Twizzlers do, so read carefully)
  • Twizzler’s Strawberry Twists (these don’t list soy, although regular Twizzlers do, so read carefully)
  • Twizzler’s Rainbow Twists (these don’t list soy, although regular Twizzlers do, so read carefully)

Contains Milk or Milk warning (but free from other 7 top allergens):
  • Pop Rocks
  • Popping Candy (Dollar Tree)
  • Pumpkin Face Bubble Gum in Jar (Target)

Contains Egg or Egg warning (but free from other 7 top allergens):
  • Bottlecaps (check every individual Wonka candy label because ingredients vary by assortment – some have wheat warning)
  • Gobstoppers (check every individual Wonka candy label because ingredients vary by assortment)
  • Nerds (check every individual Wonka candy label because ingredients vary by assortment – some have wheat warning)
  • Nerds Ropes(check every individual Wonka candy label because ingredients vary by assortment)
  • Spree (check every individual Wonka candy label because ingredients vary by assortment)
  • SweeTarts (check every individual Wonka candy label because ingredients vary by assortment, and SweeTarts GUMMIES contain a warning for peanuts, tree nuts, milk, soy, and wheat!!!)
  • SweeTarts Mini (check every individual Wonka candy label because ingredients vary by assortment, and SweeTarts GUMMIES contain a warning for peanuts, tree nuts, milk, soy, and wheat!!!)
  • SweeTart Twists (check every individual Wonka candy label because ingredients vary by assortment, and SweeTarts GUMMIES contain a warning for peanuts, tree nuts, milk, soy, and wheat!!!)

Contains Soy and Wheat or warnings (but free from other 6 top allergens):
  • Airheads
  • Twizzlers

Contains Milk and Soy or warnings (but free from other 6 top allergens):
  • Charms Blow Pops
  • Double Bubble gum (check every individual Double Bubble candy label because ingredients vary by assortment and store)
  • Hershey’s Chocolate bars, the 1.55 ounce size ONLY (the S’mores size) (all other sizes contain nut warnings)
  • Kraft Caramels
  • Sixlets candy-coated chocolate drops
  • Tootsie Pops
  • Tootsie Rolls
  • Tootsie Fruit Rolls

Contains Wheat and Egg or warnings (but free from other 6 top allergens):
  • Bottlecaps (check every individual Wonka candy label because ingredients vary by assortment – some don’t have wheat warning)
  • Nerds (check every individual Wonka candy label because ingredients vary by assortment – some don’t have wheat warning)
  • Nerds Ropes (Sam’s Club)
  • Shockers (check every individual Wonka candy label because ingredients vary) (Sam’s Club)
  • SweeTarts (check every individual Wonka candy label because ingredients vary by assortment – some don’t have wheat warning)

Contains Wheat and Milk or warnings (but free from other 6 top allergens):
  • Utz Halloween Pretzel Treats (contains sesame warning, too)

Contains Soy, Milk, and Egg or warnings (but free from other 5 top allergens):
  • Sugar Daddies (Dollar Tree)

Non-Candy Ideas (can find packs of individual serving sizes at warehouse stores like Sam’s Club):
  • Boom Chicka Pop Sea Salt Popcorn (Target – 16 individual bags per container)
  • Chex Mix (contains wheat, soy, and corn)
  • David’s Sunflower seeds
  • Funyuns Onion Flavored Rings (contains milk, soy, and corn)
  • Jack Link’s beef jerky (contains beef, free from Top 8)
  • Keebler Crème-Filled Sugar Wafer Cookies (contains soy, wheat, and cornstarch)
  • Lay’s Potato Chips (free from Top 8)
  • Nabisco Lorna Doone cookies (contains wheat, corn, and soy)
  • Oberto Beef Jerky (contains beef, free from the Top 8)
  • Oreos (contains soy, wheat, and corn)
  • Slim Jim Meat Sticks (contains beef, chicken, soy, wheat, and corn)
  • Zoo Animals crackers (Sam’s Club, contains wheat, corn, soy, milk)
  • Drinks, like Kool-Aid Jammers or Capri Suns, or sodas in mini-cans – check ingredients

Watch Out for These:
  • The following candies may land in your child’s trick-or-treat bags, and they may not have ingredients labels, so watch out for them:
  • Bazooka Gum-Filled Pops – lists only corn, but comes in an assortment listing all allergens in a factory warning
  • Banana Splits (sold at Sam’s Club in an assortment. Contains soy and egg, and has factory warning for peanuts, tree nuts, and milk)
  • Brachs – everything this manufacturer seems to make has peanut and nut warnings, plus some of the other allergens, depending on the product.
  • Columbina candies – all have a factory warning for peanuts, egg, tree nuts, soy, milk, and wheat
  • Goetze’s Caramel Creams (sold at Sam’s Club in an assortment. Contains wheat, milk, and soy.)
  • Hershey’s: All mini and fun-sized Hershey’s chocolates contain nut warnings and should be avoided. Plain milk-chocolate and dark-chocolate Hershey’s kisses are nut-free, but contain milk. Most flavored Hershey’s kisses (caramel, cherry-filled, etc.) list nut contamination. The only nut-free size of Hershey bars is the 1.55 ounce size (the type commonly sold alongside graham crackers and marshmallows for S’Mores.)
  • IBC Root Beer Barrels (sold at Sam’s Club in an assortment. Has factory warning for peanuts, tree nuts, milk, soy)
  • Jawbreakers contain only sucrose, but packaged in an assortment that lists all the allergens in a factory warning
  • Lemonheads contain only corn, but are usually found in assortment bags that include warnings for all the allergens on the overall packaging
  • Mary Janes (sold at Sam’s Club in an assortment. Contains peanuts and soy, and has factory warning for tree nuts, wheat, milk, and egg)
  • Slo Poke (sold at Sam’s Club in an assortment. Contains soy and milk, and has factory warning for peanuts, tree nuts, and milk)
  • Taffy: For the first time this year, there are 2 taffy brands that are nut free. One is made by Taffy Town, and local company, but theirs do contain eggs, milk, and soy. The other is by an online store called Sweet Pete’s , which advertises that their taffy is made in a nut-free, dairy-free, and gluten-free facility. Other than those two sources, I have not found any other taffy that is nut-free, so assume most taffy in your child’s trick-or-treat bucket contains nut contamination.
  • Tiger Pops – packaging lists all allergens
  • Warheads – various packaging lists some or all Top 8 allergens in factory warnings

Monday, August 24, 2015

Back to School with Food Allergies

by Kelley Lindberg

About this time every year I post my back-to-school tips. So I’ll repeat them again this year, in the hopes that they help smooth the way for other parents over the next few weeks. Good luck, and here’s looking forward to a successful and safe year at school!

(For those of you tuning in to see how my son did this week with his OIT, he did great. No reactions, and he’s now at 10 mg of peanut flour, which contains 4.1 mg of peanut protein, in a liquid solution. This week’s Kool-Aid flavor: grape!)

Now, back to school. Remember, there are links to several school-related resources on the Utah Food Allergy Network's website, so be sure to check those out. And last year I posted my Back-To-School Food Allergy Shopping List, so you might want to look at that, as well.
  1. Ask the principal if there are other food-allergic kids in the same grade, and if they can be assigned to the same teacher. That makes it easier for the parents of the allergic kids to trade off field-trip and party chaperone duties, reminds the teacher to keep the classroom allergen-free for multiple kids, and gives you some backup in food issues. (It's nice to NOT be the only one.) Statistically, about one in twenty kids has a food allergy, so chances are good there will be several food-allergic kids in your school.
  2. Make several copies of your Food Allergy Action Plan (available on FARE’s website) and ask to hang one in the office, the cafeteria kitchen, and the classroom, so that your child's photo and "What to do in case of a reaction" instructions are handy no matter where he is.
  3. Practice with your child what he should do if he "feels funny." Role-play and pretend you're the teacher, and have him come up and tell you what's wrong. Often our kids are too shy about asking for help, so have him practice with you, and with the teacher if possible. Not only does that give your child words to use if something happens, but it helps impress upon the teacher how important it is. If he or she has a friend in class that can help, ask them to role-play, too. Our boys have a friend who was very vocal in supporting and helping speak up for them when they were shy. (Girls are especially awesome as allies!)
  4. I get on my principal's staff meeting agenda at the first of the year and give a 15-minute talk about allergies and demonstrate the EpiPen or Auvi-Q. When my son was in elementary school, I also gave a presentation to my son's class and all the teachers and aides he comes into contact with. If you're not comfortable doing this, ask if there are other allergic parents that you can contact. Talk to them about ways to teach the teachers -- maybe another mom would be willing to give the presentation if you make the photocopies. It's easier when there are two of you involved! There are also DVDs made for elementary school presentations, so you can let the DVD do the talking! “Binky Goes Nuts” is an Arthur cartoon from PBS. “Alexander the Elephant Who Couldn’t Eat Peanuts Goes to School” used to be available from FAAN before they became FARE, but now I can only find used copies on places like Amazon.
  5. Remember, In Utah, your child can legally carry his EpiPen or Auvi-Q. But he probably is not capable of administering it to himself in an emergency, so make sure the teachers and everyone else know where it is and how to use it. Because both EpiPen and Auvi-Q are available right now for $0 copay, get a pair for the school office, and a second pair to keep with the child (in his backpack or lunch bag, usually). You might also attach a luggage tag with his photo on it to his backpack, so the teacher can tell which backpack is his quickly.
  6. If he's going to be having lunch at school, talk to the Lunch Lady and cafeteria monitor. Introduce your child, tell her what your child is allergic to, and let your child know that the Lunch Lady is a friend that will help keep him safe. Then remember the Lunch Lady and the cafeteria monitor on holidays with little thank you cards or gifts to show you appreciate them. Few people do that. But it will help keep your child's food issues fresh in their mind, and they'll get to know him well.
  7. Ask about setting up a food table just for allergic kids. All that’s required is a table with a sign that says allergies only, and the cafeteria monitors clean it with a separate marked bucket and cloth. Don’t let them make your child eat in a separate room or the principal’s office. He shouldn’t be punished or isolated just because he’s allergic to some foods! Ask the principal to mention the allergy table in a newsletter or other information that goes home with kids at the beginning of the year. You may find other kids with allergies expressing an interest in sitting at the table if they know it’s available.
  8. Ask the parents of your child’s friends to send safe lunches with them every once in a while, so they can eat with your child. Make it a fun place to be!
  9. Most peanut-allergic kids don’t react to the smell of peanut butter in the air, but a few do. If you are worried if your child will react to the air in the cafeteria, ask to take him in for a “practice run.” Sit in the cafeteria for half an hour and see if he reacts. If he doesn’t, cross that worry off your list.
  10. Eat lunch with him for the first few days. That will reassure both of you that you can both handle this!
  11. Talk to the teacher about which cafeteria door your child should use to avoid peanut butter contact (usually the one furthest from the playground), where to put his lunch bag after lunch, and where his EpiPens will be.
  12. Remind your child NOT to throw away his lunch trash. Tell him to bring it home in his lunch bag, so that he can avoid using the trash can. If another kid slam-dunks a half-full milk carton in the trash can, you don’t want your milk-allergic child to get splashed.
  13. Medical alert jewelry can help remind teachers and other staff about your child’s allergy. Lots of companies now provide medical alert jewelry in styles ranging from classic metal bracelets to fashionable plastic jewelry or even cool fabric sports bands (like at American Medical ID). Use your favorite search engine to find a style your child will enjoy wearing.
  14. If your schedule allows, volunteer a lot, so the staff knows you and counts on you (not just for allergy issues). If the only time they see you is when there's a food allergy issue, then you may start feeling like they're whispering "Oh no, here she comes again." But if they see you as a "Gosh, what would we do without her" kind of volunteer, then the occasional food issue will be coming from a great mom who's making a reasonable request.
  15. If someone else is already the class mom, or you can't volunteer for that position, tell the teacher you really need to attend all parties and field trips because of the food allergy. The teacher may want to let the other parents know that you'll be selected for all the special events because of the food allergy, so that they don't think the teacher is playing favorites.
  16. Volunteer to shop for all the snacks or food materials for classroom parties or food educational units (like making noodle necklaces or gingerbread houses, etc.). Tell the teacher if she'll collect money donations, you'll go buy all the ingredients. They're usually delighted to get out of having to shop, and it lets you ensure the ingredients are safe.
  17. Be aware and be prepared, but don't panic! School is going to be a lot of fun, and your child will do just fine. And believe it or not, so will you!

Monday, August 17, 2015

6 Reasons Why I Almost Didn’t Pursue OIT for My Son’s Food Allergies

By Kelley Lindberg

Because of some discussions that took place on FaceBook after my first OIT post, today I will share the concerns I had going into this new treatment for my son’s food allergies.

My first post two weeks ago about my son’s journey with Oral Immunotherapy (OIT) for his food allergy to peanuts sparked a lot of interest (“Searching for a Food Allergy Treatment—Our OIT Journey Begins.”) Of course people are interested—this is a new therapy for food allergy that might represent a possible way to reduce a person’s reactions to a food allergen. Since experts estimate that 1 out of every 12-20 kids in American has a severe food allergy, a treatment that would lessen or eliminate the threat of a life-endangering reaction to food would benefit millions of people.

So, as I mentioned in that first post, I’ve been watching medical studies for years. As my son approaches his college years, I’ve been hoping one of the many possible therapies currently being developed makes it through trials and gets far enough along in its progress to offer me some hope for him before he’s off on his own, eating in college dorms and living with roommates. So when my allergist began offering OIT in his office, I was interested.

I was not, however, quick to jump on the bandwagon. In fact, even though I’d been begging our allergist for years to keep my son in mind if he ever began implementing a treatment protocol, when he finally approached me, I said “No, thank you.” I felt that the treatment was still too new and that there were too many unanswered questions and risks.

Now more than a year has passed, and although I still have questions and worries, my son and I decided enough data is being accumulated and enough patients have been through the process nationwide that we were willing to consider it.

I want to share my concerns, however. My goal with blogging about our journey is NOT to become an evangelist for OIT. It is to share our unique experience, adding our personal observations, successes, setbacks, worries, and other personal views to the growing body of information out there, so that others who are interested can see one more perspective.

To start with, I thought I should share my concerns, which explain why we waited over a year before we signed up for OIT.

I am very cautious when it comes to my son’s life. (Go figure, right?) While peanuts and tree nuts represent life-threatening dangers to him, we’ve also become REALLY good at managing those allergies by strict avoidance. In 16 years, he has had only 2 minor reactions as a toddler (which were how we discovered his allergies) and one minor reaction on an airplane two years ago. We’ve never had to use an emergency epinephrine auto-injector (EpiPen). We’ve been far more vigilant than some might think is necessary, but it’s worked for us almost perfectly. We’ve avoided foods with “made in a factory with” warnings. We’ve talked to every teacher, soccer coach, and friend. We carry EpiPens everywhere we go. We’ve used an abundance of caution, and we’ve been very lucky so far.
Of course, accidents happen, and while the temptation to say “We’ve been doing fine so far, why change things” is strong, I know a big change is on our horizon—college. When he goes to college, I won’t be there to remind him, cook for him, or notice those first signs of a reaction that only moms can see. So “the way we’ve always done it” is going to change, and I won’t have any control over that.

So I want reassurance that my son’s life will be safe when I’m not around. But that doesn’t mean I’m convinced OIT will be the answer. I’m hopeful, but not blindly so.

The first caution to note is that OIT is currently not recommended by official medical associations. A growing number of individual physicians are offering this treatment in their offices, but make no mistake—it is NOT an officially sanctioned treatment. That carries a lot of weight. I had to do my own research to reassure myself that enough doctors are doing this now, and have been doing it long enough to show documented success, that I feel comfortable with the practice. Medical associations will take a much longer time and require even more well-documented and tightly managed studies before they approve of it. I had to be comfortable with moving forward without that reassurance, and let me tell you, that’s WAAAAAYYYY out of my comfort zone.

Next, this treatment doesn’t prove successful for everyone. Our allergist and others like him who are sharing information and protocols with each other are claiming a success rate of 85 – 90%. That’s very encouraging, but it still means 10 – 15% of the people who try it won’t make it to the end of the treatment cycle and therefore won’t be protected from their food allergen. That’s a lot of time, effort, and money to risk on a gamble, even with pretty good odds.

A third big hurdle for me was a study that linked OIT to the development of possible eosinophilic esophagitis (EoE) disorders. EoE disorders are a different type of allergic reaction in the esophagus and digestive tract that can cause significant health issues. I didn’t want to trade my son’s known allergies, which we know how to manage, for a potentially worse disease. But I also learned about a study that shows a small percentage of kids who naturally outgrow their food allergies can develop EoE to that same food years later. (See the article “Those Who Outgrow Food Allergy Can Risk EoE” on Allergic Living magazine’s website.) The study’s researchers speculate that the kids who develop EoE (10-15% of the kids who outgrew their allergies) may have had EoE to begin with, and the disease was hidden because they were avoiding the food. When they outgrew the allergy and began to eat it again, perhaps that’s when the EoE symptoms were triggered. So even if my son outgrew his peanut and tree nut allergies on his own, he might still run the risk of developing EoE. Also, my allergist explained that in talking with other allergists about these possible links between OIT and EoE, the allergist are occasionally seeing EoE symptoms begin to emerge, but they immediately stop the OIT treatment and the EoE symptoms disappear. As he explained it to me, their observations show that when they stop the OIT, the patient reverts to their original allergies, and the EoE symptoms go away and do NOT progress into full-blown EoE disease. So the patient is ultimately no worse, albeit no better, than when they started. However, this is only anecdotal experience, and only large-scale, long-term studies will definitively illuminate the link between eliminating food allergies (whether through OIT, SLIT, a future treatment we don’t even know about yet, or by naturally out-growing them) and EoE. Those studies may be on the horizon, but they’re not here yet. So we’re flying a little bit in the dark as far as this risk goes.

Fourth, OIT is an expensive and lengthy process. We have to realize going in that we’ll be committed to this process for a minimum of 6 months of weekly appointments, probably more. And the dosing is twice a day, every day. We are very fortunate that our allergist is in our health insurance network, so we pay the specialist co-pay for every weekly appointment, plus additional fees for the peanut solution and any other tests or expenses we incur. Many people aren’t so lucky. Either they don’t have health insurance at all, or their chosen allergist is out-of-network, meaning they must pay a higher percentage of their medical bills for the weekly appointments. We’re talking thousands of dollars here for some folks. And that doesn’t include the costs some people incur when they live far from their allergist and choose to either relocate or fly or drive round-trip to their appointments every week.

Fifth, the treatment process requires us to adhere to a very regimented schedule. We’re not a highly regimented family. We like to be spontaneous. Dinnertime can be anywhere from 5:30 to 9:00, depending on what we’ve got going on that day. And my son is right in the middle of that social whirlwind called “the teenage years.” As part of the treatment, he must be dosed with peanut solution after breakfast and after dinner every day. And he must refrain from physical activity that can raise his body temperature (which increases his risk of a reaction) for 30 minutes before and 2 hours after those doses. That means he can’t inhale his breakfast and rush off to the swimming pool to clown around with friends. He can’t wolf down dinner, then immediately long-board with friends to the skatepark. And last weekend, only a week-and-a-half into his treatment program, he had to miss out on a weekend with his best friends at a lake cabin because I need to make sure he’s dosing at the right times and that he’s close to emergency medical help if he needs it. He’s having to confine his physical activity to the middle-of-the-day hours and curtail some of his social activities, and that’s hard.

Sixth, after we go through the 6+ months of treatment, we’re not finished. We’ll never be finished. Right now, patients who complete OIT are committed to having to eat a “maintenance” dose of their food allergen every day for, potentially, the rest of their lives. So while for some of us, having to eat a handful of peanut M&Ms every day for the rest of our lives doesn’t seem like a bad thing, what if he hates peanuts? Being told you have to eat a food you hate every day for the rest of your life, just so you don’t run the risk of becoming allergic again and having a life-threatening reaction, can seem like a cure that’s nearly as bad as the disease, right? Maybe someday there will be new data that shows OIT conveys longer-term protection than it now appears, or maybe a new treatment will cure these patients once and for all of their allergies, but until then, my son will be eating a handful of peanuts (or peanut butter) every day, whether he likes it or not. And currently, the recommendation is that these “cured” patients continue to carry EpiPens, “just in case.”

So, was this an easy decision for us? No, definitely not. So why did we choose to do OIT despite all of these hefty concerns?

Because we made the decision as a family—and my son had ultimate veto power—that the risks and inconveniences were worth the possible outcome. To live his life unafraid of that accidental exposure, to be able to kiss a girl without interrogating her about her last 2 meals, to be able to go with friends to a Mexican or Chinese restaurant without being left home, to go on a vacation without worrying about how many hours away he’ll be from medical help if he goes into anaphylaxis… all of those are goals we decided are worth pursuing.

Only time will tell if we made the right decision. But it feels right for us, for now.

And for those of you following along on our OIT journey, we had a wonderfully uneventful week, with no reactions at all after his up-dosing last week (now at 5 mg of peanut flour, which contains 2 mg of actual peanut protein). And the question I know is on everyone’s mind? This week’s Kool-Aid flavor for the peanut solution is Fruit Punch!