BLOG: Eating Peanut; by Caryn and Susan

imageThere are over 50 OIT family blogs published in our Research & Learn library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey.

Susan has had an amazing OIT journey. First enrolled as one of 9 children  in the PRROTECT trial at Lurie Childrens Hospital, she later transitioned to a private practice OIT allergist, Dr. Bajowala.  The initial double-blind study with Xolair, medication believed to inhibit the body’s autoimmune response to allergens, found Susan in the placebo leg for the first part of the study, and then she was switched to the active leg. Like a champion, Susan persevered through the trial, poignantly captured every step of the way by her mom. It’s amazing journey through many facets of OIT, both a study and private practice. The blog is an amazing, must-read diary of a real-life OIT struggle through multiple reactions and setbacks.


Thursday, August 20, 2015


I think anyone who knows me well would agree that I love surprises…and gift-giving.  I don’t even need a reason to give a gift — just for fun is good enough for me.

Sitting with Dr. Bajowala after Susan took her increased peanut dose, Susan (and I) got a huge surprise — and since it was the day before Susan’s birthday, it also felt like a tremendous gift!

After watching Susan consume 4500 mg of pure peanut (about 2250 mg of peanut protein, or 4 1/2 peanuts), Dr. Bajowala opined that she felt that given how well Susan was tolerating her daily peanut doses, as long as Susan tolerated the updose, Susan could begin eating foods with risk of cross-contamination with peanut.

The updose I had feared earlier in the day, it seemed, pushed us over an invisible line…

As we no longer avoid foods with risk of cross-contamination of tree nut (Susan is allergic to some tree nuts, although she eats almonds without issue), this was a tremendous gift! (To those following closely, soy is still a concern, and Susan does not eat anything with concentrated amounts of soy protein, but there are still countless options!)

Ice cream and cupcakes and candy!
Oh my!

Asian and Indian and Thai!
Oh my!

The list of places Susan has never eaten, things Susan has never done stretches endlessly…limitations I have never really allowed myself to consider, focusing far more instead on the daily tasks involved in keeping her safe.  But, when I stop to think about the ways in which Susan’s life has been limited, it steals my breath away, makes me teary…for Susan, for the thousands of children walking in similar shoes…and I feel simultaneously thrilled and scared (oh sososo scared) of this giant step out of our carefully constructed comfort zone.

Where to begin?
Carefully, ever so carefully, of course.

After some discussion, we agreed that Susan could try one new food or place a day, and Dr. Bajowala casually noted that there was an Oberweis Dairy store just across the street from her office.
(I had this feeling she’d said this before.)

Susan was torn — go directly to GO (err, Oberweis) after her appointment or wait until later in the day to have ice cream with her friends.  And WHERE should her first grand ice cream eating experience be?  (Since it was the end of August, Susan was pretty certain that ice cream was the place to start.)

While her hour-long observation period ticked by, Susan texted with some of her friends.  I think she maybe even invited them to go with her for ice cream later in the day.  (I’m pretty sure she told two of her friends, who were on vacation, that if they got in the car and started driving, they could be back in time for ice cream!)

And then…she suddenly decided she really didn’t want to wait…and I found myself more and more liking the idea of having Susan’s first ice cream eating experience near her allergist’s office.

As we sat there, processing the unexpected gift of…freedom, I tried to hide my fear. Before the clinical trial, absolutely every single one of Susan’s anaphylactic reactions to peanut were the result of casual contact or airborne exposure — none of Susan’s anaphylactic reactions have ever been the result of actually eating peanut.Because of our history, I have a very healthy respect for cross-contamination.

That said, this…freedom…her belief in a better, freer future…is what has driven Susan through the hardest parts of the clinical trial.  

My belief that despite the carefully constructed box we have lived in for the last 10+ years of our life, at some point, somewhere, something would happen that would result in Susan having an out-of-the blue anaphylactic reaction has been the driving factor behind supporting Susan’s desire to see the clinical trial through — and to seek additional private oral immunotherapy during the 5-year follow-up study (talk about the best of both worlds!).

My belief that our carefully constructed box would not always contain this awesome child of mine is what drove us to seek treatment — any treatment, anywhere anyone would have her…

Thrilled and scared beyond measure, I agreed to take Susan to Oberweis Dairy and Ice Cream Store after her appointment with Dr. Bajowala.  And then I got scared.  Really, really scared.  

What if?
What if WHAT?
What if…she has a reaction?

Well…she’ll administer epinephrine, and then she’ll take Benadryl, and we’ll call Dr. Bajowala (that’s our protocol, although anyone who receives epinephrine should call 911 and seek care in an Emergency Room immediately).  We’ve done this, we know what to do.

My what if really wasn’t about anaphylaxis.
It was about what it would mean if Susan had a reaction after eating ice cream…or anything else potentially cross-contaminated.

What would THAT mean?
I tried to tell that persistent voice that we would deal with those issues if they came up…and I tried not to think about what it would mean if Susan had a reaction to ice cream…or any of the other things she was excited about trying.

Pushing down the doubting voice, I suggested to Susan that we go shopping at Woodman’s Market (which we LOVE and which is also very near to Dr. Bajowala’s office) to allow a second hour to pass between her updose and her first-ever typical ice cream experience.  She agreed, and we bumped into a food allergy mom who recognized Susan from her video, which was an interesting surprise for Susan (I don’t think she really gets how closely some people are following her journey…).

Next stop, Oberweis Ice Cream and Dairy Store.

The kind scooper at the counter was confused as I explained that Susan had a peanut allergy, and that because of the severity of her peanut allergy, she had never been in an ice cream shop with freedom to taste all sorts of flavors.  I then explained that because of a clinical trial and on-going treatment Susan was involved in, she was now cleared to eat things that might be cross-contaminated with peanuts.  As the scooper shifted into allergy mode, a part of me was tempted to just let her do her thing — after all, an added layer of protection would be nice, right?!  Well, maybe.  And maybe not really.  For while I was scared of what might happen, the logical side of me knows that for Susan to benefit from all that she has been through, we need to be sure she doesn’t need those kinds of accommodations.  And how to explain to the kind scooper that no matter WHAT precautions they have in place, there is NO WAY we would ever have let Susan have ice cream from there before this.

Fighting down my fear and choking back tears, I liberally interpreted Dr. Bajowala’s “only one new food or place” a day to mean Susan could try ALL non-nut containing flavors at the Oberweis Ice Cream and Dairy Store.

Chocolate Chip
Birthday Cake
Black Cherry
Chocolate Marshmallow
Cookie Dough
Cookies and Cream
Mint Chip
Dulce de Leche
Expresso Caramel Chip
Raspberry Sherbert
Lemon Sorbet
Blueberry Pie
Orange Sherbert
Key Lime Pie
Apple Pie
Cherry Pie

She tried them all!

And she campaigned to bring some home…
 (How could I say NO?  Especially when Susan suggested we take advantage of their sale…)

But there was NO WAY she was waiting until we got home to dig in, so she picked her two favorites (although they were “all so good”) for the car — Chocolate and Mint Chocolate Chip.


The power of OIT.
The power of believing in the possibility of a better, freer life.




Susan has also shared her story and what OIT has meant to her in an emotional video titled “My Kryptonite”

For her Girl Scout project Susan also created a video called “How to Stay Alive”: an educational video about how to use the Epi Pen correctly–and filmed while Susan self-injected during a reaction. The video has received a lot of positive attention and was shared widely among food allergy groups. In 2016 Susan revised the video to reflect  the new 3-second injection Epi-Pen instructions (versus 10 seconds previously).

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