First Food Challenge

I have had a little pit of unease in the bottom of my stomach all day long.  Actually, now that I acknowledge it, I realize that it hasn't been so little...and that it has been there for days.  Today, however, it is harder to ignore.  Hard to ignore, too, is the slightly nauseous feeling I have when I think about tomorrow.  And then, when I allow myself to actually think about tomorrow, I feel shaky...and slightly breathless...as though it is hard to get the air I need...and it seems harder to swallow -- and then, then -- I stop myself.  These are all symptoms of what I fear most for my daughter, Susan, who has an anaphylactic peanut allergy.  And they live in my head...but, they are very real.

After more than eight years of studiously, strictly, compulsively avoiding anything that might even potentially be cross-contaminated with peanuts -- years in which we have had to educate our families, our friends, our neighbors and our school district about the severity of Susan's allergy and the UPTMOST IMPORTANCE of total and complete avoidance -- we have sought out and agreed to allow Susan to participate in a clinical trial in which (at multiple points in time) she will consume microscopic amounts of peanut -- to the point of an anaphylactic reaction.

Tomorrow is the first of those days -- maybe.  After years of hoping for inclusion in a study or a clinical trial, and nearly a year after learning Susan was likely a "good fit" for this particular clinical trial, tomorrow puts us one step closer to...a potential cure...to a totally new paradigm for our lives...if we can navigate the scary road between here and there.

The "gold standard" for diagnosis of a food allergy is a reaction.  So, before the actual work in the clinical trial can begin, Susan must first undergo a set of food challenges.  Tomorrow is the first of two days.  On both days, Susan will be presented with chocolate pudding.  One day, the chocolate pudding will contain microscopic amounts of peanut protein.  The other day, it will not.  Because it is a double-blind study, we will not know whether or not the pudding contains peanut -- nor will the nurses or the doctors.  So...Susan might eat peanut tomorrow...or, she might not.  And that's what makes the pit of my stomach feel the way it does...

As I try not to think too much about tomorrow, the conversation in my head goes something like this:  "Lots of kids have food challenges..."

And another voice interrupts with a "yes, but, not those who have an IgE of 360 to peanut..."

Right.  While no one seems to know for certain the exact correlation between IgE levels and the potential severity of a reaction, I can state with confidence that an IgE level of 360 (levels are typically simply capped at >100), is extremely, astronomically high.  (We only recently learned that Susan's IgE to peanut is 360 -- until beginning this clinical trial, we only knew it was >100.)

While the voices in my head bicker, I realize that I have to think about tomorrow.  I have to prepare.  We were instructed in what Susan should eat for breakfast, how she should dress (loose, comfortable clothing), and what we should bring (her Epi-Pens, Benadryl, a change of clothing -- books, games, things to do...and I find myself wondering if she will feel well enough to do any of those things).  In addition to the two Epi-Pens Susan carries at all times, I have several more tucked away in my purse...and enough Benadryl for a small army.

In thinking about tomorrow, I know that in addition to the change of clothes for Susan, I am also going to bring my toothbrush and a contact case filled with saline solution.  Because while the nurse was quick to reassure us that they have never had to send a child to the Emergency Room, she did also acknowledge that sometimes there have been hospitalizations.  And then there was that call I took late last week from a billing specialist at Lurie Children's Hospital who wanted to be sure they had all of the correct information for our medical insurance (she assured me that we would not be billing for any part of the study, adding that she needed the information "just in case").  I know that I cannot know for certain where we will be tomorrow night -- and I feel (superstitiously, I am sure) that if I am prepared, I won't need what I have...

With tomorrow weighing heavily on my mind, I asked Susan tonight how she was feeling about tomorrow.  She very matter-of-factly said she was not thinking about it that much.  "The pudding is either going to have peanut in it or it will not."  That's right, my strong, steady, smart Susan.

As a parent, I make decisions all day long about my children -- some big, some little.  Some good, some with room to grow.  Some are so inconsequential that I never give them a second thought.  Others stick with me for a while.  This decision, however, rattles around and around in my head -- not because I doubt it, because I do not -- but because even with my certainty, there is still that little voice I cannot quiet that says "What if?"

Telling Teachers, Administrators, and other School Personnel...

Photo by Julie Kaplan

A number of people have inquired about this e-mail...so, I am posting it here.  We sent this to all of Susan's teachers, the administrators at her school and a number of other administrators across the district with whom we have had contact over the years.  (For those of you who read all the way to the bottom, you will note that we weren't ready for widespread sharing.  That is no longer the case...but, at the time that we sent this e-mail, we really weren't ready...)



January 23, 2014

Good Morning, everyone.

As you all know, our daughter, Susan Tatelli, has a very severe peanut allergy.  She has had airborne and contact reactions to peanut proteins in a number of settings, including on an airplane, in a movie theater and while in a gymnastics class with a child who had eaten a peanut butter sandwich on the way to the program.

Frightened by the risks Susan faces any time she leaves our house, we have been actively and aggressively pursing treatment options since we came to understand the seriousness of her allergy.  In fact, we have been on a waiting list for a clinical trial at John's Hopkins since Susan was in second grade.  

Recently, an incredible thing happened.  Susan was identified as a potential candidate for a Clinical Trial at Lurie Children's Hospital in Chicago.  If enrolled, she will be one of 9 children in a double-blind study of a medication believed to inhibit the body's autoimmune response to allergens and will undergo desensitization to peanut through oral exposure while in this clinical trial.  (It is hoped that Susan will be able to safely consume some peanut protein at the conclusion of the clinical trial, although of course we have no way of knowing what the outcome will be.)  To be admitted into the clinical trial, Susan will consume microscopic amounts of peanut protein incrementally to the point of an anaphylactic reaction while in the clinic setting.  She will also eventually consume a maintenance level dose of peanut protein at home on a daily basis.  Over the course of the clinical trial, which could last as long as 18 months, Susan could experience anaphylactic reactions.  We are hopeful that the reactions will be minimal and that they will be contained to the clinic setting, but, of course, there is no way to know for certain.  Throughout the trial, Susan will continue to carry Benadryl and Epi-Pens in her purse, which she keeps with her at all times.  She is also wearing a Medic-Alert bracelet, and once she has been formally enrolled in the clinical trial, emergency responders will have access to information regarding the clinical trial should they need to access her profile through Medic-Alert.

I met with all of Susan's teachers during conferences and was able to review the clinical trial with them and was thrilled that each and every one of them was supportive of Susan's willingness to undergo this clinical trial -- recognizing that not only is it likely to be beneficial for her, but that it also helps others like Susan who are awaiting a treatment.  While we cannot know for certain what the experience of the clinical trial will be like, I think it is possible that it will be anxiety-producing and/or emotionally draining and I am certain that it will be -- at least at times -- physically fatiguing.  If Susan were to have a severe anaphylactic reaction that was difficult to stop, she could also experience other physical side effects.

I know we have not always seen eye-to-eye with District 112 on the management of Susan's food allergies, but, we are hopeful that on this we can align.  Susan will miss some school once the clinical trial begins (with a screening appointment) on Wednesday, January 29, 2014.  Right now we know she will miss most of that day and two full days -- Wednesday, February 11, 2014 and Wednesday, February 18, 2014.  The rest of the in-clinic days will be scheduled as we go, and we will, of course, keep both Susan's teachers and the school informed regarding her progress and her attendance.  While Susan has not expressed any anxiety about the trial or concern about her ability to keep up academically, she has worried aloud that she might get "in trouble" for missing too much school.  We have assured her that the district will understand, and we hope we are correct. 

Please feel free to ask questions or concerns.  We will do our best to answer them.

Due to the sensitive nature of this, we would like to ask that if you feel we missed someone on this distribution list, you reply to this e-mail instead of simply forwarding it along.  Thank you for your understanding.