A peanut is a peanut, right? For most of Susan's life, anything peanut spelled D-A-N-G-E-R. But now, as Susan moves from participant in clinical trial to private oral immunotherapy patient, it seems not all peanuts are the same. There is peanut protein...and pure peanut. On Sunday morning, before her anaphylactic reaction, Susan took what was (and had been for more than eight months), her daily peanut dose in the form of a single Reese's Peanut Butter Cup (she's been taking her dose in the form of a single Reese's Peanut Butter Cup for more than two months). Susan's dose contained the equivalent of 2000 mg of peanut protein, or about 8 1/2 peanuts. After her anaphylactic reaction, Dr. Bajowala recommended that we decrease Susan's dose to 3000 mg of pure peanut. (That's pure peanut.) Wait. That sounds like an increase -- especially in this fast-paced world we live in. In fact, even the doctor now following Susan from PRROTECT was confused. In response to my e-mail outlining Susan's anaphylactic reaction to her dose and the plan for going forward, she wrote, "You said you decreased to 3000 mg; I thought she was on 2000 mg?"
I get it. It was confusing to me, too. Susan's 3000 mg pure peanut dose IS a decrease.
Here's the translation: 1 peanut = approximately 500 mg of pure peanut 1 peanut = approximately 250 mg of peanut protein
So...Susan's current dose SHOULD be about 6 peanuts. However, while anything peanut has always spelled D-A-N-G-E-R to us, it seems not all peanuts are the same. There are peanuts, then there are giant fancy peanuts...and then there are runner peanuts. Huh. (I'm sure there are all sorts of other peanuts out there, and I mean no disrespect to those types of peanuts I have left off the list -- I just haven't met them yet.) I hadn't ever really looked closely, but it seems that peanuts really do come in all shapes and sizes. This morning, Susan's dose -- 3.0 grams according to my scale (which is really a possible range of 2995 to 3004.9 milligrams) -- consisted of 2 whole peanuts and almost all of a half of a peanut.
It doesn't look like much, does it?
(I keep reminding myself that there was a time when Susan experienced anaphylaxis with peanut particles floating around in the air...so while her current dose doesn't look like much, it IS progress.)
But...what happened to the six peanuts Susan was tolerating? Well...they must not have been very big peanuts.
In time, according to Dr. Bajowala, we won't need to weigh Susan's dose -- she'll just count peanut halves. I trust Dr. Bajowala, but having a new and improved understanding of all the different sizes and shapes a peanut can come in has given me a new-found appreciation of my scale. While what we are doing is similar in that Susan is continuing to do oral immunotherapy, we are in a new land...and in this new land, there is a new language of sorts.
In the end, I think it is just really all about semantics.
I am a worrier. A thinker. (As a small child, I would get up multiple times after my parents tucked me in for the night -- I always had earth shatteringly important questions that just could not wait for the morning. Now, as a working mother of three busy children, I fall into bed exhausted most nights -- too tired for such wandering of the mind...) I'm not anxious, but, sometimes, when I make a decision -- especially a big, important decision -- I revisit the decision...turning it over in my mind, re-examining the decision, the various factors, all the angles -- wondering if the decision I have made (whatever it is) was truly the right decision. I haven't felt that way about our decision to seek post-clinical trial care in the form of private oral immunotherapy to peanut for Susan from Dr. Sakina Bajowala. I really, truly have not felt the need to revisit that decision -- at any point. It was one of those decisions that came easily (well, easily once I had done my research -- reading everything I could find about oral immunotherapy and talking to all the parents, allergists, and researchers who so kindly gave me their time and wisdom). The decision came easily because it seemed as certain as possible that with Dr. Bajowal'a guidance, we might be able to achieve our goals for Susan's long-term consumption of peanut (to continue, and, eventually...hopefully, increase her tolerance beyond what appeared to be a justbarelyandnotalways tolerance). While reaching a decision was time consuming, once the decision was made, I never looked back. In fact, I have been excitedly awaiting Susan's first appointment with Dr. Bajowala (tomorrow!)... And so today, when Susan had an anaphylactic reaction to her single Reese's Peanut Butter Cup, even though I have never once second-guessed this particular decision, I found myself thinking that if I had ever felt the need for confirmation of the decision, her reaction to her dose today did it.
Susan had homemade muffins (a staple in our house, and no new ingredients), melon (one that she eats regularly -- and that she had had the previous day), yogurt (a brand and flavor she adores and eats almost daily), and milk -- from a carton she drank out of yesterday for breakfast. After breakfast, she took her Zyrtec, Omeprazole and Famotidine and then ate her single Reese's Peanut Butter Cup. She finished at about 9:15 am. About twenty minutes later, after hanging out with me and Sophia, our cat that chose Susan as "hers" about five years ago, Susan and my younger daughter asked if they could go outside, to sit on our oversized chaise lounge and read. When I suggested an oversized chaise lounge to our landscape architect, wanting to be sure our patio would have enough space, I know she could hardly believe that I was asking that the size and shape of our patio be configured around a piece of furniture, but I knew -- long before we even had it -- that our big green chaise lounge would be a highlight in my life -- and I was right. I love it as much this summer as I loved it the summer it was delivered...eight years ago. Susan loves it, too. And so do Meg, and Carl.
I wondered about sitting outside post-dose, and even voiced a concern to Susan. She hesitated, and so did I. And then, after looking out the window and realizing that the chaise lounge was in the shade, I agreed that they could go. I kept an eye on them, and the chair, and about 30 minutes later, went out to see if they wanted anything. They declined my offer of popsicles (I was surprised, because in my mind it was such a treat -- popsicles before noon! -- but it really wasn't that warm...between the shade and the breeze from the lake, so I understood). I noticed that the sun was starting to peek onto the chair, and we agreed that we would keep track of it. I went back inside and started to do some work. I was shocked when Susan and Meg came in about 10 minutes later. Susan's face was bright red -- like it has been in previous reactions -- and she said her breathing felt a little "tight."
She sat down, and started pulling her EpiPen out of her purse while Meg ran upstairs to get her lovie, Ga (a chocolate brown teddy bear that she has spent all but one night of her life with since she adopted him -- paw first -- from a giant wicker basket of similar bears on Father's Day weekend when she was ten months old) and her baby blanket.
With surprise, she said "Oh, I feel better!" I was surprised, too, so I started checking her skin and assessing for other symptoms. (I didn't like what I saw -- that same hivey rash we have become accustomed to over the last year.)
And then, seconds later, she said, "Oh, no, I'm not really better." As she said it, I heard the wheezy tightness that made me absolutely certain Susan was experiencing an anaphylactic reaction. We both knew she needed epinephrine, and we didn't even discuss who would administer it. Susan's experience in PRROTECT has given her many things -- and while I think the clinical trial will become a stepping stone on Susan's path to true freedom from peanut, the most tangible thing her experience in the clinical trial has given her at this point is experience in self-administering her epinephrine...and with that comes the absolute certainty that she KNOWS what to do. I knew it already, but I saw it in black and white on Tuesday, when Susan completed the last survey for the clinical trial.
She reported believing that there is a very small chance she will die if she eats something she is allergic to (the survey asked about "accidental" consumption, but I think her daily dose applies) and reported a 0% chance that she will not know what the right thing to do is if she has an anaphylactic reaction. Knowledge is power, for sure. This morning, as Susan readied herself, preparing to self-inject her epinephrine, I did something different than I usually do. I did not sit with her, assuring and encouraging her. This time, I readied the video camera on my phone. While my hands were shaking, I was absolutely determined to mirror Susan's calm. After Susan self-administered her epinephrine last time, she decided she wanted to make some sort of video or PSA for tweens and teenagers living with food allergies for her Girl Scout Silver Award project. She wants to share her first-hand experience in administration of epinephrine with others, believing (as do I) that what she knows has the power to save lives. And so, we had agreed that if she required epinephrine again, we would try to record her self-administering her epinephrine. (Susan says she is going to hope for 5,000 views. I think she is going to be shocked by how many people want to see what she plans to offer...) I held my phone the wrong way, and Susan is not in focus 100% of the time...and there is a bit missing when Susan pulled her arm back (out of the frame) as she prepared to self-inject...but even with all of that, it is a pretty powerful piece of video. Susan was incredible. She was calm, and collected...and while I am so so ready to share her video now, this is not my project...and so it is not mine to share. But let me just say -- Susan was incredible. The video captures Susan mentally preparing to self-inject, self-injecting, her immediate reaction and the rapid relief she felt...and then her talking just a bit about what was going on for her. Susan in her soft PJ pants, a t-shirt and her hair is pulled back in a scraggly bun. IT IS SO REAL. After, Susan was shaking...from the epinephrine...and then exhausted from the Benadryl (which she took after self-administering the epinephrine). And I was shaking...from the adrenaline...and, frankly, exhausted from...everything.
I made contact with Dr. Bajowala. We made a plan. Instead of reducing Susan's peanut dose to 3000 mg of peanut (approximately 6 peanuts) tomorrow, during our scheduled visit, she asked that we reduce Susan's dose for tomorrow morning. My husband, Paul, bought peanuts. A whole can of them, at Costco. The can reads: "Super Extra Large Peanuts" and carries a cross-contamination warning for dairy (thankfully, so not an issue in this cheese and yogurt loving household!). He texted: "I can't believe I am buying peanuts." Right there with you. We sorted out a new (and stubborn) medical scale that SHOULD have calibrated easily but never did after the pharmacist at Walgreen's refused to weigh her dose (liability) and a Facebook plea for a medical grade scale we could borrow came up empty. (Our scale measures to .00 of a gram, so there was a bit of room for error...which we addressed.) Carl and I played with peanut "wholes" and peanut "halves" and peanut bits. We decided it was a bit like playing Tetris (a game I am decidedly good at, fortunately). We arrived at this as the proposed dose:
(That's 2 whole peanuts, 1/2 of a peanut and a "peanut part. Really -- mind-bogglingly not a lot...)
I sent a picture of the proposed dose by text to Dr. Bajowala, explaining the limitations of our scale and initially describing the dose as 300x (x = ?) mg of peanuts. Later, a very bright Grinnellian pointed out that actually, it "could be anywhere between 3004.9 mg and 2995 mg. Probably not significant." I replied that one never knew in peanut-eating land, to which he replied it was fortunate that we had a doctor whose advice we could rely on. With gratitude for all of the doctors who are collaborating on Susan's care, I replied, "or 4!"
Susan hung out all day, reading, watching movies, playing video games. She was in bed, asleep for the night, before 6:00 pm. We haven't left her alone, and won't. Once again, the cause of Susan's reaction is not known. Maybe the sun and heat, but it really wasn't very hot, and while she DID end up in the sun, it was for a very brief period of time. I don't believe this particular adverse reaction could be related to a discrepancy in dose (Reese's Peanut Butter Cups appear to be fairly uniform), to puberty or to her fledgling cycle...and other than the fact that she got braces on Thursday, there really isn't anything new. A dear friend said it well...after we discussed the possible causes for Susan's reaction without arriving at any real answer, I reminded her that Susan has new (as of Thursday) braces. To which she replied: "Which is such a crazy variable but I will believe anything at this point." Right. Me too. Which is why I am thankful beyond words that we are where we are in terms of a care plan going forward... I don't think I will ever get to the point that I take an anaphylactic reaction in stride, but I honestly believe that I am more confident in Susan's ability to take care of herself now than I was eighteen months ago, before her first reactionthe night of the food challenges that resulted in her being offered enrollment in the clinical trial. I had a friend wonder aloud today why we would continue this course. The answer is simple. Because I want Susan to live a freer life. And so does she. And while her journey might be harder than most, isn't freedom worth fighting for?
Over the last eighteen months, I have become somewhat active in a number of different food allergy Facebook groups. I joke that I am both an accidental blogger and an accidental "Facebooker" -- but the truth is that it is true. Two years ago, I barely knew how to sign into my Facebook account, and I followed exactly...one blog. Today there have been several posts on the various Facebook groups regarding food allergies and freedom. Those posts got me thinking...about Susan, about the freedom we have as Susan's parents to pursue the care we think is in her best interest...and about Susan's on-going quest for greater freedom from her peanut allergy...
In June, I wrote to the doctors running PRROTECT [Peanut Reactivity Reduced by Oral Tolerance in an Anti-IgE Clinical Trial (supported with Xolair)]: "While Susan appreciates the freedoms she is likely to have as the result of the clinical trial (she has already, for example, been to several movies in the theater and we are talking about taking a short flight), she wants greater freedom." That's right. Greater freedom. And she's willing to do whatever it takes -- including eating a daily dose of peanut that her body does not always tolerate very well. During Susan's enrollment in the clinical trial, I often had people question our decision to allow Susan to stay in the clinical trial -- especially as the number of anaphylactic reactions she experienced grew. In a blog post in January, I wrote: "I have lost friends who do not -- simply cannot or will not -- ever understand or accept our decision to pursue treatment for Susan through a clinical trial...and I have gained a community of people who -- like me -- are searching for a safer passage for their children. (I have come to understand the value of true friends, and am beyond thankful for those in our circle who have supported us even if they may not fully understand or agree with our decision...)"
In the months since then, I have continued to be asked to defend our decisions to those who do not see it clearly themselves...and I always find myself explaining that we have allowed Susan to guide us in the decision making -- and she has aways, without fail, even immediately following an anaphylactic reaction to her dose, wanted to see this course of treatment through. I have found myself explaining that it must be more awful to live with life-threatening food allergies than I can even possibly imagine, for Susan to willingly put herself on the line (I will not say at risk, for I have come to know with certainty that one thing Susan has gained from this clinical trial is confidence...the knowledge that she absolutely knows what to do in an emergency) every single day. And then, earlier this week, on the last day of the clinical trial, I got to see it for myself, in black and white. [Since the clinical trial began, every so often we have been asked to complete repeat surveys regarding Susan's peanut allergy and it's effect on the overall quality of her life. Susan, my husband, and I each complete our own, independently. Once, I "oversaw" some of Susan's answers, and as I wrote in January, I felt terrible about the fact that I accidentally saw Susan's completed survey...and even worse about what I accidentally learned. "My strong, kind, compassionate and brave Susan is saddened and [very] troubled every time she is different, left out...restricted...limited. And because she is the kind of person she is, she hides it."] During our last clinical trial visit, we were asked to complete the same survey -- for the last time. This time, I asked for -- and received -- Susan's permission to look at her answers. I was prepared to let her look at mine if she asked, but...she didn't. I put my social worker hat on and talked about it with her as I looked at it...and with her permission, I photographed it, knowing that some day, I would write about it in its entirety.
Toward the bottom of the second page of the three-page survey, I saw -- in a single question -- the reason behind Susan's determination to fight her on-going personal war against peanuts. On a 6-point scale, with 6 being the worst, Susan reported a 5 ("very") in response to how disappointed she is that she has a peanut allergy.
I can say with confidence that our country's freedom came as the result of leaders with vision, commitment and determination fighting a series of long, hard and (I am sure) sometimes frightening battles. Freedom did not come easily for our country, and freedom from Susan's peanut allergy is clearly not going to come easily to her. But that does not mean it is not worth the fight. Susan does not have the freedoms most of us living in this country have -- she cannot sit where she wants in the school lunchroom, she cannot just go out to eat, she cannot make spur of the moment plans, until recently she NEVER went to the movies, she cannot...live without thinking about countless things: the risk of exposure to peanut, what she will eat when, and whether or not she is making safe choices. We do not fly (an emergency landing after Susan experienced anaphylaxis from airborne exposure to peanut permanently "grounded" Susan), and we rarely travel -- and when we do, it is with countless extra precautions, special cleaning requests, a pre-determined list of very safe restaurants (Chipotle and Qdoba top the list)...and a cooler of food. Susan cannot go anywhere without emergency medication -- which she carries in her purse...and which she wears at all times...even in our own home. Today, I am thankful we live in a country where we, as Susan's parents, have the freedom to seek the treatment we believe is in her best interest.
And, today, as I sit here writing this, I truly believe that some day, Susan will have her own personal "Independence Day." I am confident that what it takes to achieve such independence makes the victory all that much sweeter, and I am committed to standing by Susan, supporting her however I can, as she continues to fight her own personal war against peanuts...moving from clinical trial to private OIT (oral immunotherapy).
Susan's journey toward freedom from her peanut allergy has not been fast, nor has it been easy. But, isn't anything this potentially life-changing worth fighting for?
We are writing to you because we are hoping you will agree to something we know is highly unusual. We would like one of the doctors from PRROTECT to co-follow Susan during her post-clinical trial care with Dr. Bajowala. I raised this concept previously, but wanted to write directly to explain why it is important to us.
While our most compelling reasons for wanting Susan to be co-followed by one of the doctors from PRROTECT and Dr. Bajowala once the clinical trial is over do not pertain directly to her, we do believe it would be in Susan’s best interest – as a patient and as a child. Continuity of care and maintenance of the relationships Susan developed with doctors during the clinical trial is important for Susan, as she has consistently demonstrated a strong commitment to research in the food allergy field. If she is co-followed, Susan will experience that same commitment from the doctors who have overseen the clinical trial since the beginning while undergoing the more specialized treatment options we are hoping Dr. Bajowala can offer. As Susan’s mother, I feel strongly that it is important that she feels supported in her post-clinical trial care plan, even if it is unusual.
In the past eighteen months, I have come to understand that there is a long-standing history of subtle (or maybe, in some cases, not-so-subtle) tension between pediatric allergists in the field of food allergy research/clinical trials and pediatric allergists offering treatment for food allergies in private practice. I have also learned there are many people within the food allergy community who believe there is only one “right” way to address the growing food allergy crisis. Susan’s experience in the clinical trial over the last eighteen months has underscored what we already believed to be true: the “new” real world allergy patient is unique. Every patient needs something different, and for many of those patients, a truly meaningful, quality-of-life-improving treatment is only likely to be achieved with the wisdom of more than one doctor.
If Dr. Bajowala and a doctor from PRROTECT work together to treat Susan once she finishes the clinical trial, it will send a powerful message to the food allergy community that ultimately the “food allergy cure” is not the same for every patient. While I am an accidental blogger, I have come to understand the importance of sharing Susan’s story, as people everywhere need to understand the realities of these early food-allergy treatment efforts. Many people in the food allergy community have followed Susan’s journey, and are waiting to see what happens next. Working together, we could become an incredible example.
Working together to find the very best treatment approach for Susan would be a significant and remarkable leadership step, as co-following Susan would demonstrate the possibility of forging a very important relationship between those who do research and those who implement in practice the research that has been done. We also believe that for those parents who hesitate to allow their child to participate in a clinical trial because they worry about post-clinical trial care, demonstrating clearly this type of post-clinical trial commitment is very important, and feel that it might make participation in clinical trials more appealing. We also believe that if both doctors work together, the formation of such a treatment team for Susan would directly challenge the belief held by some parents of children with food allergies that researchers are not invested in the long-term well-being of their subjects. (While I do not believe this to be true, I have heard it often enough to know there is a significant percentage of the population that does).
In addition to the benefits Susan would derive from being co-followed, and the benefits to the food allergy community as a whole, the doctor from PRROTECT and Dr. Bajowala would likely derive benefits for their own practices. As a social worker, I firmly believe that I can always learn from other skilled clinicians, and I believe the same is true in the medical field. We are confident that if you agree to work together, and to co-follow Susan, you will both benefit from exchange of information you can use to inform your own practices.
We think everyone involved will agree that Susan did not respond to the treatment provided in the clinical trial as anticipated. While there are a number of theories as to why Susan did not respond as anticipated, we do not yet understand why she did not achieve the desired tolerance of peanut protein. We believe that under Dr. Bajowala’s care, with treatment tailored specifically to Susan, we are likely to gain a better understanding of why Susan struggled to achieve the desired tolerance of peanut protein. While we know Susan falls outside the “norm” in terms of her response to the treatment provided in the clinical trial, we are increasingly certain that Susan is not the only child who has not responded as expected in a clinical trial. Children like Susan, who do not respond as anticipated are of tremendous concern for us, for the key to their food allergy treatment is clearly not yet fully understood. We are hopeful that Susan’s response to an individually tailored treatment plan with Dr. Bajowala will provide insights that will be beneficial in the treatment of other children like her, and we expect that treatment implications generalizable to others like Susan will emerge.
We see the unexpected week in which Susan is still in the clinical trial as an opportunity to work out whatever details we need to in order for this to work for everyone, including a communication plan and method for sharing of medical records. When we met with Dr. Bajowala in early June, she was already somewhat familiar with Susan’s experiences in the clinical trial. Dr. Bajowala also reviewed Susan’s course in the clinical trial with us in great detail. She was highly complimentary of the PRROTECT doctors’ efforts to keep Susan in the clinical trial by addressing symptoms during Susan’s early dosing with medication. She noted how committed everyone was to Susan despite Susan’s difficulties during the clinical trial, and Dr. Bajowala agreed with the concern we think we all share, which is that Susan does not consistently and reliably tolerate her daily peanut dose.
While I invite you to talk with Dr. Bajowala directly (and I will sign whatever release or consent needed), I feel that I can accurately summarize her initial treatment plan. She recommended reducing Susan’s daily peanut dose, adding probiotics and Vitamin D and slowly weaning Susan off of the Omeprazole and then the Famotidine. Dr. Bajowala expressed her belief that with time, Susan could increase her daily peanut dose, but we agreed to address increased peanut dosing once we see how Susan does with the initial treatment plan. I believe that a reduction in Susan’s daily peanut dose is a recommendation everyone will be comfortable with.
Once Susan, Paul and I met with Dr. Bajowala, our decision to ask Dr. Bajowala to treat Susan after the clinical trial was easy, because she has extensive experience with oral immunotherapy and she had some concrete ideas about how to improve Susan’s tolerance of her daily peanut dose. While the best choice for Susan was clear, it was a hard decision to make, because we do not want to lose our relationship with the doctors from PRROTECT, and we never want anyone to feel that we think treatment in a private practice setting is preferable to participation in a clinical trial. While the best course for Susan was clear, concerns about how our decision would be viewed by others – and about the message it might send to the food allergy community – gave us pause. When I explained to Susan yesterday that I intended to write this letter, asking Dr. Bajowala and a doctor from PRROTECT to co-follow her, she was really pleased. I asked her what I should say, and she summed it up well: “I think this would be a great learning opportunity for everyone.”
We think we understand the significance of what we are asking, and we thank you for your consideration of our request. Should you agree to work together, we promise to do all that we can to make the collaboration easy, and if for some reason co-following Susan does not work, we will chose a single doctor promptly. We are deeply hopeful that we can find a way to make it work for both Dr. Bajowala and one of the PRROTECT doctors to co-follow Susan. While we know our request is unusual, we believe we all want the same thing – fewer children living with the risks and limitations imposed by food allergies. Thank you so much for all you have done already – and for all we hope you will be able to do—for Susan, and for countless others like her.