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!

OIT Food Allergy Treatment, Step 1: Yep, He’s Drinking the Kool-Aid

By Kelley Lindberg

My son swallows his first dose of
peanut flour mixed in Kool-Aid. This dose
equals about 1/100,000th of a peanut.

Last week I announced that my teenage son will be undergoing a new treatment for food allergies, called Oral Immunotherapy (OIT). (See “Searching for a Food Allergy Treatment—Our OIT Journey Begins.”) While not yet recommended by official medical associations in the U.S., I feel like OIT has also progressed beyond the purely experimental stage, with a small but growing number of allergists in the country providing this treatment. While the temptation to embrace this treatment as the miracle cure I’ve been hoping for is strong, there are many significant reasons to be cautious, or even downright wary.

However, I know many of you want to know how my son is doing after his first two weeks of treatment, so this week I’ll focus on telling you how the first two weeks of treatment have gone. Next week I’ll step back and talk about the concerns I had (and still have) going into this treatment, because I want the information I post to be as fair and balanced as I can make it. Otherwise, it’s of little use to anyone, in my opinion. Deal? Deal! (And I promise all my posts won’t be this long, but there’s so much to share in these first couple of posts. Sorry!)

Day 1, July 27:

Today was our information kick-off meeting. We met with the allergist and his staff, and we went over all the details, such as the dosing schedule and what to do if he has a reaction to the dosing. Highlights:

• We’ll spend two days introducing tiny amounts of peanut in a liquid solution, every 15 minutes over a period of 3 or 4 hours, gradually increasing the dose until he reaches the level just below where average patients begin to show reactions. (Or they will stop sooner if he reacts sooner.)
• After 2 days of this in-office treatment, we’ll take home a bottle of the solution, and we’ll administer it to him twice a day at home, every day, until next Thursday when we return for our regular “up-dosing” appointment. Assuming he got through the week without any major reactions, the office will administer an increased dose to him and watch him for reactions for an hour before sending us home with a bottle of that increased dose. We’ll dose him at home twice daily with that until the next Thursday. We’ll repeat this cycle of returning to the office to increase the dose (“up-dosing”) every week at the same time.
• If he has a small reaction, such as a few hives in a localized spot, we can treat with liquid Zantac, liquid Zyrtec or Allegra, and if necessary, a liquid steroid. For larger reactions, we should call the doctor immediately and be prepared to administer epinephrine. Larger reactions, including anaphylaxis are less common, but they do occur.
• He must take the peanut dose on a fairly set schedule—once after breakfast, and once after dinner, but not later than 9:00pm (so that he has a good two hours of being awake and alert before going to bed, because those two hours are the most likely time to have a reaction, and they don’t want him falling asleep during that time). The doses should be between 9 and 15 hours apart, so there is some flexibility, which is good for our family.
• He must refrain from physical activities that might raise his body temperature for 30 minutes before and 2 hours after each dose. For an active teenager, this could be inconvenient.
• He will start on a liquid peanut solution, then after a few weeks graduate to peanut flour mixed into a soft food (like pudding or applesauce), then finally graduate to actual whole peanuts. At every step, the peanut proteins are carefully measured and controlled. You definitely can’t do this at home (unless you have a measuring cup that can accurately measure 1/100,000th of a peanut!).
• To enhance the treatment, the doctor recommends taking a probiotic daily. Some studies indicate that food allergies may be linked to the reduction of beneficial bacteria in the gut due to antibiotic use, so our allergist includes probiotic use in his protocol.

After hearing all of this information, my son and I went home to talk about it.

And my son balked.

He had been the one who first wanted to do this, for the obvious reasons: he wanted to be free from the danger of accidental exposure, and he wanted to stop worrying about peanuts everywhere he went. I hadn’t been sure about it in the beginning, but because he wanted to do it, I was now on-board.

But now that the treatment was only hours away, he suddenly realized it’s scary. He’s never had to use an EpiPen, and now the doctor was telling him he might have to BECAUSE of the treatment. Plus, he fixated on the “no physical activity for 2 hours after dosing” rule, and he became very upset about that. Never mind that he no longer plays soccer or runs track, and he primarily spends his time on the computer, playing his guitar, or watching movies with his girlfriend. In his mind, this was a sudden, insurmountable problem that no one warned him about.

He went to his room, I started texting my friend Kim for advice, and we each stewed for an hour. Then I went to his room, shoved the pile of clean laundry off onto the floor so I could sit beside him (See? We’re just like every other family!), and started to talk to him. I talked about the reasons we had originally looked into this process, and the ultimate goals that he longed for. We talked honestly about pros and cons. Finally, I realized I was talking myself into quitting the process. But much to my surprise, he had talked himself back into it! When he calmed down from his initial panic, he realized that his goals to become as peanut-worry-free as possible outweighed his concerns. Then he just had to talk me back into it.

Finally, we both agreed to go ahead and start the OIT procedures the next day, as planned.

It was a mentally exhausting discussion, but one I think we both needed to work through in order to feel good about what we are doing.

Day 2, July 28:

8:30am: We get to the doctor’s office bright and early, ready to start (despite yesterday’s hiccup).

8:45am: Our allergist meets with us privately to answer last-minute questions and brief us again on what to expect. We ask about probiotic brands and dosages, but otherwise we are as ready as we are going to be.

9:00am: We’re taken to the Food Allergy waiting room, where other patients and parents are gathered. There are 5 patients starting this OIT cycle with us: three teens (my son is the oldest at 16) and two younger kids (the youngest is 4). My son has brought his laptop and I’ve brought a book to read.

It looks like a syringe, but the solution is not
injected--it's squirted into the mouth and
swallowed. The syringe is an accurate way
to measure and deliver the liquid orally.

9:20am: First dose! The nurse gives my son an oral syringe filled with 5 mcg of peanut flour mixed in a liquid, which he squirted into his mouth. Then he has to “swish and swallow” with water to make sure none of the solution gets stuck in his mouth, and that he swallows all of it. (Spoiler alert: The “secret liquid ingredient” into which the peanut protein is mixed is cherry Kool-Aid!) He breathes deeply a few times, and again every few minutes, to “test” himself for any reaction. He wasn’t told to do this, so I know he’s just nervous and worried that he’s going to start wheezing. He doesn’t.

9:35am: Second dose, same quantity (5 mcg).

9:50am: The dose is doubled, so this time he ingests 10 mcg. After a few minutes, I think his face starts to look faintly reddish, but after a few seconds, it fades and I can’t decide if it’s my imagination or not. I ask the nurse, but by then his color looks normal and she doesn’t see anything either. He doesn’t feel anything, and he continues working on his laptop. I have a hard time focusing on my book.

10:05am: Same dose again (10 mcg). People in the waiting room are starting to talk to each other and share “when did you find out he/she was allergic” stories. Everyone’s nerves are starting to calm down a little.

10:20am: Increased dose—now he’s at 25 mcg.

10:45am: Increased dose again—now he’s at 50 mcg. Again, I think maybe he seems a tiny bit flushed, but it only lasts a few seconds, and then it’s gone again. It could be my imagination. I am so worried that something wrong is going to happen, I know I’m conjuring up demons. But he says he feels totally normal, he’s stopped taking deep breaths, and he’s totally relaxed about the whole thing. I’m trying to relax. Honest.

11:05am: Same dose (50 mcg).

11:20am: Increase to 100 mcg. All is good. No flushing.

11:35am: Last dose of the morning, and it’s 100 mcg again.

11:45am: The doctor comes in and gives us a refresher talk about dosing at home and what to do if he gets sick. Then the nurse gives us an oral syringe filled with a single dose (half of the amount in the last dose he just took, so 50 mcg of peanut flour), which he will take at home after dinner tonight.

7:40pm: We finish dinner, then give my son his evening dose of 50 mcg.

9:00pm: My son is annoyed with me because he just asked if he could go long-boarding with his friends. I told him he needed to stay home so I can watch him for reactions. Maybe eventually I will be more comfortable with him going out in the evenings, but for the immediate future, I need him nearby.

A hive!!!! (On his lower cheek.)
Despite my initial maternal panic, it
went away after we treated him with
oral antihistamines.

9:15pm: We’re watching TV, and my son says “Mom, I have three hives.” WHAT??? Sure enough, he has one on his cheek, and a couple on his right side. I grab the paper that says what to do in a reaction, and I line up the 3 liquid medications I’m supposed to give him. My son calmly says, “Really? All three?” Suddenly I’m questioning myself. Did the doctor say to give all 3? Or one at a time? Or…? Crap, I don’t know! I dial the phone number on the “home dosing instructions” sheet and the doctor answers. I tell him what’s going on, and he calms me down and says to administer Zantac and Allegra, but to hold off on the steroid. He says if the reaction gets worse to call him back. I make my son hang up his phone (for some reason he thinks a girlfriend conversation is more important, but I insist) and I give him the 2 medications. The hives disappear in a few minutes. Yes, I watch my son like a hawk for the next several hours. No, he doesn’t get any other hives. No, he doesn’t ask about going long-boarding again. I can’t help making one snarky little “See why I wouldn’t let you go long-boarding tonight?” comment, but prevent myself from repeating it ad nauseam. I’m proud of my restraint. I’m not sure he appreciates it, though.

Midnight: It’s been 3 hours, drama-free. We each head for bed peacefully, our first day over and our first crisis minimal and handled. Whew. I can do this, right?

Day 3, July 29:

8:30am: We arrive at the office and get checked in.

Graphic found on
Bruno Thadeus’s Hypersensitivity Slideshow 

9:00am: The allergist comes to talk with us privately to see how we’re doing. My son is fine. I’m still nervous and a little embarrassed about calling the doc last night. He assures me that’s normal, then says from now on, when there’s a small reaction like that, we should hold off and watch it for a few minutes to give the body a chance to resolve it on its own. He admits that this is exactly the opposite of how we’ve been trained to act all along, but because these are minute quantities and his reaction last night was so small and immediately cleared up with the medication, we want to give the process time to work on building up his immunity. He also spent some time explaining the science of what we're doing. In overly simplified terms (which I am probably explaining poorly), a reaction happens when a single allergen protein molecule lands on two IgE receptors on a mast cell at the same time. If an allergen protein molecule only lands on one IgE receptor, there’s no reaction. It has to connect two receptors for a reaction to happen. So what we’re trying to do by introducing minute amounts of the allergen protein (in this case, peanut protein) is slowly saturate individual mast cell receptors with their own protein molecules until all the receptors are eventually “occupied” by a single peanut protein molecule, so that there aren’t any lonely IgE receptors hanging out trying to make a pesky threesome. (Okay, I’m positive that’s not how the doc explained it, but you get the idea.) {Photo from } The doctor also said that the OIT process may also increase the IgG4 in the body, and if the amount of IgG4 eventually dominates over the amount of IgE, that may add additional protection against allergic reactions. Yeah, I’m going to need to do some more research before I fully understand all of that.

9:30am: First dose of the day. Because my son had a minor reaction after last night’s dose, we dropped back to a lower dose this morning. So while the other patients began with a higher dose of peanut (1 mg, I think), my son started back at 25 mcg. The doc recommended being conservative today, which frankly makes me happy! This means we may extend his treatment by a few weeks overall, but I’m okay with that.

9:43am: I think my son looks faintly reddish again, but it goes away quickly.

9:45am: The red is gone, and he is given the next dose with no problems. This dose is 50 mcg.

10:00am: 50 mcg. No red color, no problems at all.

10:15 and 10:30am: These two doses are at 100 mcg, which is the dose we finished at yesterday in the office. There are a lot of people in the Food Allergy waiting room today—the same people who started this cycle with us yesterday, and additional patients who are farther along in their treatment and are coming in for their weekly “up-dosing” appointment. Several chat with us about how happy they are with their treatment so far.

10:45 and 11:00am: Both of these doses are 250 mcg each! This is the highest he’s done so far. No problems.

11:15 and 11:30am: 500 mcg… still going strong!

11:45 and 12:00: His last two doses for the morning are both 1000 mcg each (1 mg)! This is where the rest of the kids started this morning, but like I said, I’m okay with being conservative and taking it slow. We will go home with a bottle of the Kool-Aid solution. He will take a half-dose tonight (500 mcg), then starting tomorrow morning he will take a full dose (1 mg) twice a day until we return next week. The other patients are doing doses of 5 mg now, so my son is behind their level, but I still feel good about taking it a little slower.

Midnight: It's been an uneventful evening, which is just the way I like it! No hives, no worries after his evening dose.

Day 6, Aug 2:

My son finds an itchy bump on his torso about three hours after his morning dose. It doesn’t really look like a hive, and it could be a bug bite. Hmmm. We watch it for a half-hour, and it doesn’t get any worse and no others pop up. We don’t administer any medication, and eventually it starts to fade and finally goes away on its own.

Day 10, Aug 6:

This is the bottle of peanut solution
we use at home. Grape Kool-Aid. Mmmm!
(My son says he'll never be able to
drink Kool-Aid again without chasing it
with water for the "swish and swallow" step.)

Today is our first “up-dosing” appointment. We tell the doctor about the one mystery hive/bug-bite/bump last Sunday, and he says it probably wasn’t a hive since it happened so long after the dosing, and says we did the right thing to watch it. My son is given a single dose of the new increased amount (2.5 mg), then we sit in the waiting room for an hour to make sure he has no reaction. This time, the peanut flour is mixed in grape Kool-Aid, and for the first time, we can actually see the peanut flour floating in the solution. It’s strange to know that he’s ingesting this, on purpose, after so many years of strict avoidance. Life is weird.

Day 16, Aug 12:

I am finally getting all these notes written up for my blog. He’s been doing great all week—no reactions, no hives, no problems. Tomorrow is our next up-dosing day.

If you’re still reading, I’m sorry this was so long, but I hope this has been informative. Next week, I’ll post about some of the concerns/cautions related to OIT. (Plus, I’ll provide an update on how he does after tomorrow’s up-dose, of course!) See you then!

Searching for a Food Allergy Treatment—Our OIT Journey Begins

By Kelley Lindberg

That's my goal: Stay calm while we try to
re-train my son's body to tolerate peanuts.

My son is two years away from starting college. When he was first diagnosed with allergies to peanuts and tree nuts 15 years ago, there was very little information available out there, and almost no support for parents of newly diagnosed kids. Fortunately for me, I immediately found a friend in the same boat, whose child had also just been diagnosed. (Quick aside: If I could grant the world a wish, it would be that everyone had a wonderful friend like Kim by their side!) Then together we discovered the Food Allergy and Anaphylaxis Network (now called Food Allergy Research & Education, or FARE), and that was our first lifeline to information we could use to make life more “normal” for our kids.

As the years went by, awareness, resources, and information began to proliferate. Now there are hundreds of cookbooks, a bazillion websites and blogs, educational programs for teachers and caregivers, support groups in every state, restaurants that “get it,” and online and real-world communities where we can share our stories and help each other navigate the world of food allergies.

The one thing there hasn’t been is a scientifically vetted treatment for food allergies.

There have been lots of studies, lots of possibilities pursued, lots of theories, and lots of attempts. Several are still ongoing. Many more have been abandoned because they just didn’t work the way researchers hoped. But as all this research has been discussed over the years, my one hope was that some kind of treatment would finally be available to patients before my son went away to college.

For 15 years, we’ve managed his food allergies by the only method available—strict avoidance of the allergens. And we’ve worked hard at it. We avoid foods that say “made in the same factory as foods containing nut products.” We read every label. We carry EpiPens at all times. We train teachers, soccer coaches, friends, and relatives. We work with the schools to raise awareness and minimize risk for not just my son, but for all the other students with allergies, too. I’ve maintained this blog for years, and I was on the board of the Utah Food Allergy Network (UFAN) for 5 years (and I’m still an active member!), sharing information to make other families’ lives easier.

And still I hoped for a treatment that would protect him when he goes away to college. But every year, college got closer and treatments seemed to get farther away.

But then a spark of hope. My son’s allergist told us he’s part of a nationwide network of providers offering an early program of Oral Immunotherapy (OIT), where the allergen is introduced in a tightly controlled, carefully measured manner over a period of many months, in an effort to slowly desensitize the body to that allergen. I’ve been reading about this treatment for years, watching to see if it fulfills the promise shown early on. After helping develop a protocol for this treatment and after a year of conducting this treatment on patients in his office, my son’s allergist says he’s seeing success rates of 85-90%.

I wasn’t an easy sell. I’ve also been watching the research concerning various other treatments, including one derived from a Chinese herbal remedy (Food Allergy Herbal Formula-2, called FAHF-2), a desensitization treatment that introduces peanut proteins through a patch on the skin, and a desensitization treatment where the protein is administered under the tongue (sublingual immunotherapy, SLIT). And I’ve been watching the side effects and failure rates of different treatments. So far, while not a perfect solution, OIT research seems to be showing strong success rates and is closer to wide-spread use than some of the other treatments. So as my self-imposed college deadline looms, I asked my son if he was willing to do OIT.

After many conversations and much soul-searching, we decided this felt like the right time and the right decision for our family. If he were younger, I might have held off, waiting for more of the other treatments to become more established. But those may remain options for the future if OIT doesn’t work for him. And there’s no guarantee it will work. He could be in the 10-15% for whom it doesn’t work. But if we don’t try, we’ll never know. And we’ve decided the end-goal of being able to eat in a university cafeteria, hang out with friends, and live with roommates without the constant worry of accidental exposure is worth the risk.

So we decided to go for it.

Last week, we started the treatment. I’ve been taking notes as we go, and starting next week, I plan to post my observations and thoughts so that others can see what our OIT journey is like for us, and what’s involved at each step.

If you’re interested, I hope you’ll join us on our journey.

Happy (and Allergy-Safe) Cinco de Mayo!

by Kelley Lindberg


Hola!

Everyone’s favorite pseudo-holiday, Cinco de Mayo, is this Thursday! Because we Americans love any excuse to celebrate, we’ve co-opted yet another minor holiday and turned it into a giant beer- and food-filled fiesta! (Think St. Patrick’s day, but with spicier fare.)

Not that I’m complaining, mind you. I love Mexican food! (And the margaritas are nice, too.)

But while you’re celebrating, keep in mind that Mexican restaurants are one of the most likely places for a nut-allergic person to have a food allergy reaction.

Nuts, you ask? At a Mexican restaurant? Dairy, sure. Seafood, okay. But nuts?

Yep, nuts.

Mole (pronounced "mole-ay") sauces, a mainstay of many upscale Mexican restaurants, are wonderful, flavorful sauces for enchiladas. However, almost all mole sauces are made from ground-up nuts – almonds and peanuts being two of the most common, but not the only ones.

But moles aren’t the only culprits. Plain ol’ enchilada sauce – that ubiquitous red sauce that smothers enchiladas, burritos, heuvos rancheros, and just about anything else that comes on a plate, can often have a nut warning on the label.

So before you move your fiesta to a restaurant, call ahead or check their website to see if there are safe menu items for your nut-allergic family member or friend. My son knows to stick with a plain cheese quesadilla whenever we go to our favorite Mexican establishments, but that would never work for someone allergic to milk, of course.

Mexican food is delicious and often fairly easy to make at home, where you have complete control over the ingredients. So this year, consider turning Cinco de Mayo into a fun-filled family fiesta, with everyone joining in the cooking activities!

Tacos are super-easy (even for little ones to help with), and they can be made with any protein source you’re not allergic to (shredded pork, ground beef, chicken, fish, shrimp, black beans, pinto beans, etc.) a few safe spices, diced onions, tomatoes, black olives, lettuce or spinach, salsa, etc. If you’re allergic to milk, try Tofutti’s soy sour cream and Daiya’s shredded vegan cheddar cheese (also soy-free) for toppings (both found at Whole Foods and some health-food markets).

Add some safe corn or flour tortillas, or some home-made cornbread (use rice milk and your favorite egg substitute in the recipe – bakes up great!), and some fresh fruit, and you’ve got yourself a simple school-night dinner that’s muy bueno! And for an extra treat for the kids (and for the adults who aren’t interested in beer or margaritas), check the Mexican food aisle at your grocery store for some authentic Mexican sodas, in flavors like pineapple and mango. It’s a super-simple addition that can make an ordinary meal into something a little more especial!

I Wouldn’t Wish Allergies on Anyone

by Kelley Lindberg


Back in January of 2009, Joel Stein wrote an essay for the LA Times proclaiming that food allergies are made up by hysterical parents who crave attention. It caused a lot of controversy, obviously. (“Nut Allergies – A Yuppie Invention,” LA Times, Jan. 9, 2009. )

Understandably bothered by his misinformation, I responded by writing my own article on my blog. My article began with “Dear Joel, I’m glad no one you love has a severe food allergy. I wouldn’t wish that on anyone.” ("Countering Hysteria," Food Allergy Feast blog, Jan. 19, 2009)

You’ll never guess what happened. A couple of weeks ago, Mr. Stein wrote an essay for Time magazine. Turns out, his one-year-old son has developed nut allergies. Read his new essay here: “A Nut Allergy Skeptic Learns the Hard Way,” Time, Aug. 14, 2010.

In this latest essay, he describes how many people wrote to him after his earlier column, saying they wished he would have a child with food allergies someday. What a hateful thing to wish. Why is it human nature to lash out violently, rather than try to educate and reach a mutual understanding? After all these thousands of years, we’ve got a pretty impressive track record showing that throwing bigger and bigger rocks doesn’t really have the effect we were looking for.

So Joel was throwing rocks, parents of allergic kids were throwing rocks right back at him, and no one made any progress, unless you count progress towards more reactionary and poisonous backlashes on both sides. Gee, I’m underwhelmed with surprise.

I didn’t wish for Mr. Stein to become intimately familiar with a parent’s fear. I DID wish for him to become more informed, more aware, and less inclined to propagate dangerous misinformation. Of course, his career is based on writing amusing, barbed commentary skewering anything he feels like. Being a big fan of the First Amendment, I don’t have a problem with that. My only problem is when writing those opinions might cause a child to be put in a life-threatening situation. We writers sometimes walk a blurry line between informing and harming, and it's important to approach that blurry line with a deep sense of responsibility.

Now, Mr. Stein has written this new essay admitting that his son has developed nut allergies, and that he’s having to eat some crow. That takes a big man to do that. It takes an even bigger man to do that in a national spotlight, like in Time magazine, for example. I’m sure there are plenty of small-minded people out there who are taking some sort of sick satisfaction out of this unfortunate turn of events in the Stein family’s lives. But the fact remains there’s a small child who’s affected here, and that child’s safety – like all of our food-allergic children’s safety – is all that truly matters.

So here’s my response to Mr. Stein’s latest essay:

Dear Joel,

I’m so sorry to hear that your son has developed food allergies. This will add a layer of worry to the already worry-filled job that we call parenting. But fortunately, there are many resources, both online and in your own community, that offer education, nut-free products, school action plans, recipes, and tips for making your child’s experiences with everything from playdates to school to birthday parties to dating (yes, that will be here before you know it!) safe and “normal.”

I’m sorry you’ve had to join the ranks of parents of allergic kids, Joel. But we welcome you to our ranks, too, because here is where you’ll find the information and strength to absorb this new aspect of life into your routines of daily living. We’re all in this together, and we are happy to help.

Sincerely,
Kelley Lindberg
Mom of a peanut-allergic kid

Replacing Peanuts and Tree Nuts in Recipes

by Kelley Lindberg


Last week, we discussed some ideas for replacing eggs in favorite recipes. This week, we’re talking about peanuts and nuts.

Replacing peanuts and tree nuts in recipes is often pretty easy. In most cases, nuts are used as a garnish or as additional texture, so you can usually just eliminate nuts from a recipe, and it will hold up just fine (such as in fudge, banana bread, or a casserole.). But here are some additional ideas:

Instead of a using slivered almonds or another nut topping on a casserole, try using safe bread crumbs (dry your own if you need to), crushed potato chips, crushed pretzels, or crushed tortilla chips. You never know – the new variation you’ve created may turn out to be even more popular than the original recipe!

Instead of a nut topping on a dessert, try a streusel topping. Mix together 1/3 c. flour, 1/4 c. safe softened margarine, 1/2 c. sugar, and 1 tsp. cinnamon and sprinkle it on top.

Another yummy dessert topping might be an oatmeal crumble topping. Mix together 3/4 c. uncooked oats, 3/4 c. flour, 1/3 c. brown sugar. 1/2 tsp cinnamon, 1/8 tsp nutmeg, and 1/3 c. melted safe margarine.

Instead of using nuts in a cookie recipe for texture, use safe chocolate chips, dried cranberries, raisins, or oatmeal.

Instead of using peanut butter in a Thai recipe or in a dessert, use Sunbutter (made from sunflower seeds). Sunbutter makes wonderful Muddy Buddies, for example! You can try this delicious Peanut-free Muddy Buddy recipe that I posted before. Sunbutter is very similar to peanut butter in taste and texture, and it seems to work well in most recipes, so give it a try. It’s a much closer replacement than soy butter, in my opinion. Just make sure you explain to people that it’s not real peanut butter, so they don’t think you made something with peanut butter, so it’s okay for them to do it, too!

Do you have any additional suggestions for replacing nuts or peanuts in a recipe? If so, leave a comment and share it with us all!

Next week, I’ll talk about some ideas for replacing milk and other dairy products in recipes.

New Food Allergy Desensitization Research Project in England

by Kelley Lindberg


The British newspaper The Telegraph is reporting that a British doctor has been awarded one million British pounds to begin a new research project on the desensitization of children to their peanut allergies. (See “AAAS: Cure for Peanut Allergy ‘Within Three Years’.”) This study will involve 104 children – his previous study involved only 23 children, and 21 of them were eventually able to tolerate a limited number of peanuts without a reaction.

This new research project is expected to last three years, and the doctor, Dr. Andrew Clark of Addenbrooke’s Hospital in Cambridge, England, expresses hope that his desensitization cure will help transform the lives of food-allergic people.

In his study, he gives children a minute amount of peanut flour mixed with yogurt. They ingest this amount at regular doses on a strict schedule, carefully desensitizing the child to the allergen over a long period of time. At the end of the study, he hopes to be able to transition to clinical treatment for other peanut-allergic patients. However, if I understand correctly, he does not yet know if these children will have to maintain a weekly dosing schedule to keep their immunity in place, or if the three-year treatment will provide a long-lasting tolerance. He says a separate long-term study is needed to determine how permanent the solution will be.

It’s exciting to see more and more studies like this being funded. Whether or not this treatment really turns out to be the “cure” we’re all hoping for remains to be seen over the next three years, of course, but this is definitely one of the more promising treatments that scientists are focusing on. As I’ve mentioned before in my blog postings, food allergy studies have a bad habit of contradicting each other, but in this case, desensitization studies seem to be showing a generally positive trend. They haven’t worked for all the participants, but enough that it’s very encouraging.

British writer Delia Lloyd, on the Politics Daily website (see “Parents Rejoice: Peanut Allergy Cure Within Sight, British Study Finds”), talks more about this study and how its results will ultimately affect food-allergic people. Her own son is allergic to peanuts, so her reaction to this study is not just informed, but personal. It’s interesting – do check it out.

Every day, I’m more encouraged about the progress I’ve seen in food allergy research over the last decade. Thanks to these dedicated scientists and researchers, maybe by the time my son is raising kids of his own, food allergies will be an easily treated or even preventable disease. It will be nice to know he can spend his sleepless nights as a parent worrying about something else, like dating, driving lessons, report cards…

Cloudy With a Chance of Food Allergies

My husband took my son to see Cloudy with a Chance of Meatballs yesterday. I’d heard there was a scene in it where someone has an allergic reaction to peanuts. I didn’t tell my son about it – I wanted to see his reaction when he got home. In fact, what I really wanted him to do was write about it for my blog today.

The interesting thing is, he was able to describe the scene to me just fine, but when I asked him what he thought about it, he shrugged. “I don’t have any feelings about it at all. It was just a scene in a movie, Mom.”

“But did you think it was kind of neat to see food allergies show up in a movie, or did they make it too silly?”

“Mom, I told you. It was just a scene. I didn’t laugh, I didn’t cry, I didn’t go Arggg!”

Hmmm. “But do you ever see characters with food allergies in any of the cartoons or movies you see on TV?”

“I wouldn’t say it was normal. They don’t usually say that people have allergies in a movie or show. It was just a scene in a movie; I didn’t think much of it.”

I’ve been reading a few comments online about this scene, and it’s mixed. For the most part, parents of food allergic children are annoyed or downright horrified that 1) the reaction is depicted as comical, 2) the smart allergic heroine carries a Doppler radar thingy but not an EpiPen, and 3) it’s unrealistic, yet still scary for little ones with reactions, and 4) it makes light of the whole thing. On the other hand, there’s that old saw about “any publicity is good publicity,” so some parents are saying it’s good to see that food allergies are common enough that they can be used as a major plot point (I brought this up a while back in a posting about allergies in the movie The Game Plan) or even as a throw-away piece of dialogue (like in an episode of the TV show Reaper). Only a few are saying it’s no big deal either way. I guess my son is one of those.

He’s ten, of course, so maybe older kids are simply able to recognize that it’s silly, unrealistic, and as absurd as the entire rest of the movie, and therefore not to be taken seriously. I would be willing to bet that kids his age are probably better equipped to let things like this roll off their backs than we parents are. We parents take everything seriously when it comes to our children.

So if you’ve seen the movie, what did you think of it? And more importantly, what did your food-allergic child think about it? Did it help, hurt, or was it “just a scene in a movie”?

Regional Differences in Food Allergies

I came across a story in New Scientist magazine about possible reasons why people in different parts of the world are prone to different food allergies (“Food Allergies Get Curiouser and Curiouser.”) The peanut is a common allergen in the United States, but not so common in other countries. Melon is a more common problem in Greece. Apples are the culprit in Italy.

Why are there so many regional differences?

This article discusses studies that show a possible reason: many plant pollens that cause hay fever contain proteins that are very similar to the proteins in certain foods. While the plants and foods aren’t actually related, the molecular structure of the proteins are similar enough that a sensitivity to one (in the form of hay fever) might “prime the pump” and make you more susceptible to developing an allergy to the other. The article uses the examples of birch pollen allergies, which may make northern Europeans more prone to apple allergies, dust-mite feces that may correlate to shrimp allergies, and mugwort allergies that may link to carrots, celery, and sunflower seeds.

There have been studies in the past that have tried to examine reasons why regional differences exist in food allergies. In November 2008, I wrote about a study published in the Journal of Allergy and Clinical Immunology that compared Jewish populations in the U.K. and Israel and their very different rates of peanut allergy. The study used Jewish populations in both regions to try to control as many cultural variables as possible. Their conclusion was that since the Israeli population gives infants more peanuts and has a lower rate of peanut allergy, perhaps everyone should introduce peanuts to infants earlier and in larger quantities. But that goes contrary to other studies that seem to show it’s better to prevent peanuts from being introduced until later in life.

But the study didn’t seem to take into account environmental pollens in the two countries, which would be vastly different between the two climates. The New Scientist article brings up an interesting new angle on that older study – what if the reason the U.K. children have more peanut allergies is because their bodies are already primed to react by a pollen that is prevalent in the U.K., but which doesn’t exist in the drier environs of Israel? It would be interesting if someone could go back to those original U.K. and Israeli populations and cross-check the existing pollens in those two areas to see if a new pattern emerges from that.

So once again, we still don’t know very much about the causes of food allergies. We are still bombarded by theories. We still feel like we’re grasping at straws. However, there is some good news: more and more studies ARE being conducted. Only after many years and many individual studies that test different aspects of allergies will scientists be able to look back, gather up all the thousands of puzzle pieces from all those studies, and begin fitting them together into a whole picture. And only then will we start to see what we’re really facing and how to deal with it all.

On the one hand, it’s frustrating to feel like we still know so little. On the other hand, I have to remind myself that we know a lot more now than we did a decade ago, and in ten more years, we’ll know even more. Each new study turns over another puzzle piece on our table. And that gives me something to hope for.

Welcome! Why This Blog Exists...

“Listen to this,” I said to my husband. I was reading the nutrition information on a box of crackers. “`This product was made in a factory that also processes peanuts’,” I read to him. “Why on earth would they print an obscure fact like that?” It seemed so silly.

“Well,” said my husband calmly, without looking up from his newspaper, “I guess if you were really allergic to peanuts, you’d need to know that.”

“Why?”

“I think sometimes people are even allergic to the peanut dust on the machinery.”

“Hunh. Hadn’t thought of that. Whatever,” I said, and tore into the box.

Not my most sympathetic moment.

A year later, I was sitting in the pediatrician’s exam room, my 18-month-old son’s face red and puffy after eating a few bites of a peanut butter sandwich.

Now I think about that obscure warning label all the time. Every time I go grocery shopping. Every time we eat out. Every time we get invited to dinner. Every time I pack my son’s lunch.

That obscure fact is now an essential element in my life, because my son is allergic to peanuts and tree nuts.

Life has a funny way of teaching compassion.

Finding out my son has a life-threatening food allergy was scary. It was distressing. It was confusing. It was infuriating.

With time, research, and reflection, I also finally realized what it wasn’t.

It wasn’t the end of the world.

Life is full of turning points, large and small. Some turning points we recognize right off, like the day I switched majors in college, the day I said, “Yes, I will marry you,” and the day the doctor said, “Your pregnancy test is positive.” (Hoo-boy, that was a biggie.)

Other turning points are smaller and harder to recognize at the time – like the day I took a temporary job as a technical writer, or the day my mother talked me into joining a club of stay-at-home moms.

That day in the doctor’s office was a turning point, but not necessarily in all the bad ways I initially thought it was.

It changed how I think about food. It changed how I plan my family’s menu and diet. It means I have to interact a little more with my son’s school, friends, neighbors, and activities.

Is that a bad thing?

It’s a challenge, sure. But we all get handed challenges in one way or another. This one is one of ours. And honestly, as challenges go, it could be so much worse. At least this one is manageable.

That’s why we’ve created this web site and blog – to make it just a bit easier for us all to manage our families’ food allergies. Like so many of the turning points in this endless string of turning points we call life, this particular one is easier to accept with a little information, a few handy tools, and a community of friends who “get it.”

Thanks for stopping by. If you see some information you can use, take it. If you have some information to share, we’d love to hear it. You’re part of our community, and we’re mighty glad to have you.

Kelley

P.S. Remember, I’m not a doctor. Never have been, never want to be, bless them all. Information on this site is for discussion and thought-provoking purposes only and should never be used in place of your doctor’s recommendations, and it cannot be construed as advice or diagnosis. By accessing this web site and blog or the information in it in any form – electronic or paper or any other type of real, alien, or imaginary media – you agree not to sue us, and to instead seek out professional medical advice.

P.P.S. No stalking, either.