Graduation Day

I didn't start really crying until about halfway home. I still haven't fully processed what I'm about to write here.

When my son started middle school and still had his milk allergy, my husband and I really lost hope. We had seen the statistics and knew the vast majority of kids who are going to outgrow their allergy have done so by jr. high school. The more years that went by, the smaller the chance.

And yet...we just returned from the last of five food challenges done this year: milk. And he passed. He passed. HE PASSED!!!

The challenge was very quick. Four doses, a total of 1/4 cup of ice cream, spread out over about an hour and a half. No symptoms. Nothing.

The doctor told him that he really has no restrictions from this point forward. We can ramp up slowly or just have him start eating everything and anything. We stopped in at Chipotle on the way home and he ordered lunch with sour cream. I started my knee-jerk reaction at the counter because I saw cheese in the guacamole...and then I remembered it no longer mattered. It didn't matter that I touched the sour cream in my own lunch and then dipped my hands into the chip bag. All old thinking.

We actually sat at lunch and talked about the different kinds of milk and cheese, something I never could have envisioned 19 years ago that I would have to do with my nearly-grown son. I told him that cow's milk and goat's milk cheeses taste different. That the sour cream he was not very impressed with was totally different than the cream cheese on bagels.

We talked about how he could have a bakery cake now for his birthday. How we could go out to dinner anywhere. How he could go on a cruise and eat from the buffet.

I told him how many pennies I had thrown into wishing wells over the years.

I honestly don't know what to do with myself now. I've promised him I will stop asking him if he's o.k. and stop watching him. I'm sure it will take a long time to adjust to our new normal.

Nineteen years ago, almost to the day, my husband and I brought him home from the hospital, our first-born son. We had struggled (as I'm sure all parents do) to get him into his tiny car seat and all the flowers into the car. We struggled to get everyone and everything in the house. And then we both stopped.

"What do we do with him now?" my husband asked. I had no idea. Did we leave him in the car seat? Put him in his crib? Take his coat off, or leave him sleeping? We realized in that moment how totally clueless we were about parenting.

Today feels the same. Exactly the same. Every meal, every family activity has been impacted by this milk allergy. And now...I don't know what comes next.

But i know it's going to be wonderful.

Thank you, every one of you. Thank you to his doctors, both at his regular practice and through Children's in Chicago. Thank you to all the teachers and parents who helped. Thank you to my bosses who gave me the flexibility to deal with the clinic days and doctors appointments.

No, we don't know if it was the FAHF-2. No, we really don't even care. Yes, there's still peanut (and maybe hazelnut and lentil). Tomorrow I will start dissecting things and wondering whether we should have been doing these challenges sooner. We'll debate the maturing immune system vs. the impact of the pills.

Today I'm going to go watch him sleep, just like I did when he was the tiniest of babies, and be so very grateful that he is my child and that everything is o.k.

Beans, Beans and More (or Less) Allergenic Beans!

We have a little good news this week: my son passed a home bean challenge for both pinto and cannellini (white) beans last night. Hooray!

At our last allergist visit, they ran the numbers on a number of varieties of beans and many were Class 0, with values like 0.68. My son's doctor thought it was reasonable to try these at home.

Going to stop for a moment and interject: DON'T DO THIS WITHOUT YOUR DOCTOR'S DIRECTION. A lot of things go into whether home challenges are a good idea for your child: how serious the allergen typically is, how far the hospital, how experienced the parents are with recognizing reactions. Many doctors are not comfortable with this at all. But, in our case, it makes sense to do some challenges at home because my son tests slightly allergic to dozens of foods.

He has avoided all beans since around age five, when he started developing new allergies. First it was tuna. Then cashews. Then (to our great surprise), he suddenly became allergic to garbonzo beans, something he had eaten very regularly through toddlerhood. Then it was sugar snap peas. Green beans. Baked beans (a particularly scary reaction that happened at his aunt's house, out of town, without medication in hand). The doctor actually thought it was possible he had something called "idiopathic anaphylaxis" at the time - reactions from unknown causes. However, after we kept a careful journal and did some testing and even in-office challenges, it became apparent he had developed a bean allergy.

At that point, we just started avoiding all beans and peas, which our doctor thought was reasonable. It turns out that 1 in 20 kids can have an allergy to a seed protein that's shared between bean species. If my son had that type of allergy, it was possible even more bean sensitivities would surface.

Fast forward to the start of high school. My son is a very healthy, adventurous eater and he wanted beans back in his diet, so we asked about home challenges at that time. The doctor said "sure."

We followed the same protocol as in the office: start with 1/4 of a bean and double the amount every 20 minutes until he reaches several Tbsps. of the food. The hardest part is that he has to discontinue his antihistamine for 7 days before.

We introduced kidney beans and my son had no problem during the challenge. However, the next day, he threw up after eating chili with kidney beans. A couple days following - exact same result. We all sighed and put it back on the list of foods to avoid.

This time, thankfully, things were different. Both pinto beans and cannillini beans went off without a hitch.

Did my son really outgrow beans this time? Might the FAHF-2 have helped? Or were we just avoiding two varieties that he could have tolerated all along? We don't know.

It's also early days with beans. We could have the same experience as several years back, where he succeeded in the challenge but really can't tolerate beans in his diet.

My husband had a gleam in his eye last night. He said to me for the first time "do you ever wonder if he's just not allergic to anything any more except peanut?" Yes, I wonder. It's time to do an open milk challenge and find out.

Even if he fails, even if the FAHF-2 had nothing to do with any of these successes, I'm still incredibly grateful. The clinical trial didn't just change his body; it changed how we all think about this stuff. We're just not as afraid. (I actually went to bed and SLEPT while his second set of bean challenges were going on!) We understand now that our fear was as big a burden as the allergens. And, we're pushing harder to work through this stuff, even when it's incredibly hard to find the time and emotional reserves to do it.

Yes, I'm grateful. Happy Thanksgiving to all of you celebrating this week!

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Dreaming of the End of Food Allergies

We all dream about life without food allergies. What makes it especially hard for me is that I've heard now for 17 years that "a cure is just five years away." (Now I didn't do well in high school math, but even I know the numbers don't add up there.)

When I get really bummed out, I think about what it would actually be like if the wish came true and my son outgrew all his food allergies:

• He could travel anywhere. No thoughts about whether there's a good enough hospital, close enough, with the right equipment. No concerns about finding appropriate foods. Cruises...rural camping... exotic locations...college semester abroad...backpacking through Europe: all on the completely-manageable list of possibilities.

• He could eat in any restaurant. No more only four restaurants in his future! There would be no calls to the manager before he went, asking about the kitchen in general and their comfort level with cross-contamination. There would be no conversations that border on confrontation in order to ensure that everyone who touches his food really knows what's going on. We would no longer discard whole worlds of food (Chinese! Indian! Italian!) because of the risk. He wouldn't have to carry in his own bread and salad dressing. We wouldn't have to watch him like a hawk after eating. We wouldn't have to argue with food establishments about the legality of carrying our own food in. He could eat dessert. 

• He could kiss a girl if he wanted. No worries about whether she had eaten peanut or put on lip gloss containing soy protein.  No wondering if the hands of the girl he's holding at the dance were just dipped in the buttered popcorn a few minutes before. No awkward questions and avoiding the whole situation because it's just too embarrassing. 

• He could carelessly socialize with his friends. No going back for the medication bag (which looks like a purse no matter what we do). No negotiating which restaurant so he can eat something. No avoiding the school pancake breakfasts and language food days and United Nations weekend trips because they're so food-centric. 

• He could get a part-time job without concern. So what if he had to handle peanut-butter cookies, or make coffee drinks with cream? Without food allergies, he doesn't have to worry any more if he touches his contaminated finger to his eye. Look ma, no reaction! 

• He could have a reasonable amount of stress about leaving home. No thinking about how to find foods, store foods, cook foods. No missing out on communal dining and cookies sent by other kids' parents. No psychological weight of a possible reaction: anywhere he eats, everywhere he goes. No balance between telling people for safety's sake and boring/ annoying/ alienating people by talking about it. No convincing, cajoling, educating, avoiding. No need to question whether they believe, whether they would help, whether they might even harm. 

I know I'm whining. I remember my pediatrician tell me when he was little "just be grateful it isn't something really bad, like cystic fibrosis or diabetes." I understand that, I really do. My child is healthy. He's happy. He's reasonably well adjusted.

But I'm a MOM. I want what every mom wants: no limits for his future. No risks. 

Clearly I can't have that. But I can dream, can't I?

Tigers In Our Midst: Groupthink, Anxiety and Allergy Communities

When my son was around four, he started developing "mystery" reactions to foods he had eaten all his life. My husband and I were absolutely panicked; in addition to the stress of the reactions, many of the suspect foods were staples in his somewhat-limited diet.

We pursued allergy testing, but the doctors' conclusion was something called "idiopathic anaphylaxis", meaning reactions with no known cause. They told us it might be food, but it also might be exercise...or something environmental...or a combination of things. So, basically, go forth and live your life with the snarling tiger of an out-of-the-blue reaction always focused on your shoulder blades. Pounce!

Understandably, it was at this point I sought out an on-line help community, thinking that someone else must have gone through this. Luckily, some of you had. While no one had been through our particular flavor of crazy, you gave me enough tips and experiences that we finally did identify what was going on: an allergy to a seed-pod protein found in almost the entire legume family. Problem solved! Reactions averted!

However, there was a price.

I stuck around the community, on and off, for years. Eventually, I ended up running it for three years. What that meant from a practical perspective is that I was there every day, reading as many posts as possible to identify potential problems/trolls.

Little by little, as I spend more and more time there, I felt the eyes of a different tiger drilling into my shoulder blades: groupthink anxiety. Some of you may know what I'm talking about:

• What do you mean you give Benedryl at the beginning of a reaction? Epi-Pen, right away, no matter what!

• Your child is having so many reactions! Maybe you're taking too many chances.

And, always underneath every surface-helpful but ultimately-judgmental post:

• What if you wait too long/take a chance/do something wrong and your child dies?

I've read the list of everyone who ever died from a food allergy. I've emailed with the parent visitors whose children passed away. I'm not saying this is a zero-risk situation.

However, it got to the point where I was questioning whether I was a bad parent to allow my child to attend a sleepover. Questioning whether I should be forcing the school (ha!) to institute a peanut ban, even though my son had never had a contact reaction. Whether touching the outside wrapper of a peanut-containing candy bar was really a risk. And, through every discussion, ran the tiger of what if you do something wrong and your child dies? The groupthink always gravitated toward the most extreme comfort zone and constant immersion made it very hard to keep my own boundaries.

Our on-line communities serve an information and support purpose that's very difficult to find in the physical world. However, for me, it also reinforced anxiety in a way that was not healthy.

It all came to a head when we started re-introducing some of those foods to my son to which he had showed an allergy at age four. The inevitable consequence of food challenges and re-introductions is symptoms. Itchy mouth. Funny feeling in the throat. "Push through it," said our doctor. My God, what are you doing, give a fricking Epi-Pen and stop this high-risk behavior before your kid is another statistic was the voice I heard in my head.

I quit the community over a year ago in the hopes of taming the anxiety tiger. However, I still hear its voice every time I hand my kid a food containing baked milk (which we were cleared for last summer). It's what makes me hesitate to keep the dosage consistent. It's what makes me obsessively worry every time he coughs or clears his throat after he eats it.

So...I'm back to where we were in preschool, feeling the eyes from the tiger of random reactions (this time from problem foods I'm choosing to give him) drilling into the back of my shoulder blades. Facing off with Random-Reaction Tiger is Constant-Anxiety Tiger, who I've knowingly fed for over 10 years in exchange for invaluable information.

And right in the middle is my son, who watches my face each time I give him his milk-containing food. And each time he considers going out with friends...or asking a girl to a dance...or trying to figure out how college is going to work for him. He sees the tigers. He's anxious and afraid and really, really angry, and I don't blame him one bit.

Tigers suck.