This One Goes Out To the Ladies

Before the dose, vital check.

I’ll be honest; my daughter’s peanut allergy has become one of my own defining characteristics, a part of me. “Hi, my name is Sara, I am the mother of a child with a peanut allergy,” I feel I need to preface every conversation with this explanation... or join a support group. It is amazing how often it enters into conversation. When making plans, talking to friends & before beginning the lengthy explanation at any outing, vacation, or any new adventure in our life, it is obviously important for it to be in the forefront of the convo.  I live, eat, and breathe making sure her life is more comfortable, safe, and free of danger. The peanut allergy is our reality, but doesn’t need to define us as individuals or as a family and we work toward that, but sometimes it is a relief when others “just get it.”

That is not to say our family & friends don’t try, they absolutely do! Close people in our life, the ones we call family and friends – we couldn’t ask for any better, we really couldn’t. They have supported us in ways Jason and I couldn't imagined. When I consider the level of support, the outpouring of prayers, love, and affection my family receives, I am blown away. So, when the question comes from family, friends and co-workers - “How is Maddy’s peanut therapy going?” My response is much like when people ask about Jason & his treatments - optimistic, somewhat quick & to the point while showing them my true appreciation for their thoughts & prayers. “Great! Smooth sailing! She is doing so well with it! Thanks for asking.” I don’t want to show my anxiety about giving her the peanut solution, how difficult it was to leave her the first time with other people after giving the dose, how hard it is to allow anyone else (yep, even my husband) to pull the dose to give it to her, or how scary it all is in the very pit of my gut at times. If people ask for more, I’ll give it to them – like how amazing this process is, how she is more likely to react if she exercises, or what the dose looks like now and what it will look like later.  Sometimes those I am talking to will share with me something about their own allergies or about a family member or friend who has allergies, but not many have the time for more, or even know what to ask. And that’s fine. Bottom line – Maddy’s fine, she is doing well with it and the plan is working, it is really working!!! 

Maddy's OIT support group.

Maddy is not the only one the plan is working for. She is one of nine patients participating in peanut OIT with Dr. Mayer and for this dose increase appointment Nurse Amy made the appointment intentionally with “the girls.” As I know them on Facebook, “the girls” are Ella, Livvie, and Isabella- three bold and beautiful little girls who’d begun desensitization in varying degrees prior to Maddy. I’d been in contact with their mothers via a Facebook group for months. MONTHS! In my research of Oral immunotherapy, I’d come across a number of groups - these women and their stories were among them. They shared stories, links, resources, questions, and more. I’d bared my soul to them in somewhat anonymity up till this point. These same women also shared a similar identity as me – we had a connection to peanuts that brought us together in fear, anxiety, and desperation. These were some of the very people that brought me to Dr. Mayer and desensitization. In actuality, these same women moved me toward taking the first steps by showing their own valor and tenacity and by forging ahead in the allergy world and most importantly - no longer allowing peanuts to rule their lives. 

The OIT girls goofing around - not a side effect!

The afternoon at Dr. Mayer's office was amazing! Maddy had very few concerns with her dose increase and the girls clicked immediately! They instantly hit it off and played together (more like ruled the play room, allowing no boys at all!) while the parents observed intently. We all tried to play it cool, all while keenly observing for signs of a reaction, especially those of us new to this. Jason was even able to chat it up with another attending father, while I met the moms. In my mind, these moms and these girls were heroic. They’ve paved the way for so many of us behind them and are successful; they are achieving the impossible – beating peanuts! These amazing women are amazing models for their daughters, and mine. 

In my life, I am lucky to have strong and beautiful women by my side – my mom, my mother – in – law, my sister & sisters-in-law, my own Godmother & also my husband’s, my pastor, my daily confidantes & great friends and my co-workers. It’s funny, as a young woman, I had few girlfriends, surrounding myself with mostly men, well boys. I seemed at ease with them, no problem to be “one of the guys.” As I have aged, or matured, rather, I find women bring strength and balance to my life. They understand life when the honeymoon is over. They get it when seven months into pregnancy and all you need is someone to tie your shoes, do your laundry, and cook your dinner. They feel you when seven months after pregnancy you still want someone to do your laundry & cook your dinner, and you've given up shoes that tie because they add too much to your getting ready routine. They completely get you when your night out is a night in with the girls and you come home entirely sober, smiling like a drunk, and happy as a clam that you got to have some adult conversation, your own meal, and one night all to yourself, a bit different from men. Women complete me. The women at Dr.Mayer’s office are another facet, a cluster where I belong & need to speak freely about my obstacles with peanuts & allergies - where they get me, whether I see them in the office or "like" their comments, posts & pictures on Facebook, another group I can come home to. Thanks, ladies, all of you.

Helping check vitals after dosing hour is up.

Next!

Maddy's turn!

Doing the Best I Can

The weeks that followed Maddy’s Rush Day were a test in this mother’s patience, faith and nerve. Only a fraught mother of a child with a severe food allergy could feed her child poison two times a day for the sake of protecting her “in the long run.” I believe in Dr. Mayer’s plan, have confidence in his staff & in the end product, and trust that we are doing the right thing, nonetheless each time I drew the medicine out of the bottle, placed it in Maddy’s mouth & waited with her, I second guessed myself just a tiny bit. When I give her Tylenol, Motrin, or other medicine I check and recheck the dosage. Imagine my unease in the case of peanut protein and my peanut allergic baby. Best case scenario – I was doing it right. Worst case scenario – I had the epi-pen handy. Just as anytime she’d taken a bite at a new restaurant, a new food, or when I’d seen the school’s phone number flash across my cell, I held my breath for the worst. 

That first day of home dosing was the worst… for me. I planned nothing. She & I did nothing. Fortunately we are in the stage of our summer where we are okay with pj’s, coffee and terrible TV all morning if we darn well please, thank you very much! This gets us into trouble later when school starts, but for this particular morning it was perfect. However, I watched her like a hawk, nervous as could be. The rest of Maddy’s weeks with this dose went truly well. She took the 1 ML of Solution C with great confidence every day, reminding me each morning and night of the time if she thought I forgot - yea right! And letting me know of every single itch on every spot on her body for the following two weeks… and we looked at every itch, tickle, or bother that she couldn’t see to be certain that there were no hives taking over her body, but by day four they were none. She did have a few hives the first few days, small bumps that if I didn’t know any better I would not have even thought were hives, but they were gone a few days in. That was it – her body was becoming desensitized to the amount of peanut protein in the solution. How cool!

1 ML of Solution C, 12 hours apart daily.

Physically, she has been taking the dose great. Emotionally, it took a bit of time to stick, I think. Maddy is much like both her dad and myself when it comes to showing real emotion. She is funny, of course and uses her humor to deflect any pain or upset that she may be feeling. Sometimes, she may not even know what or how things may be affecting her when they are. This started young and I’ll never forget when I realized it. Her daddy was going through his first round of chemotherapy after being diagnosed with colon cancer and having colon resection surgery at age 32. We thought she was just fine, even though she was just four years old, we had all powered on around her making her life as normal as we could. She attended a great cooperative preschool that helped us so much, we remained very positive and we had that amazing network of family & friends we hold in our bubble surrounding us. Jason even shaved his head in preparation for the treatments in September and for Halloween that year, Maddy went as Annie, he as Daddy Warbucks, and I got to be Miss Hannigan – fun times! Through the pain there was laughter and much fun, but of course there were tears and, at times, distress. I remember this time in particular because it made me think twice about how I treat my emotions in front of her. I had my moments, my meltdowns – making the bed, making dinner, laundry, taking a shower, when I simply needed to sit down and cry. Maddy found me in my moments every so often. Rather than tell her what I was upset about my line was, “Mommy’s just really tired,” then picked myself up & got back to my mommy business. Mommy was tired, but that wasn’t the whole truth – I mean come on, I was crying about all of the other things – cancer, chemo, and the other unspoken possibilities that come with “The Big C.” 

So, when Maddy melted, she had a “I just need to cry because life is getting to be too much for me at the moment and everyone keeps telling me my Daddy is sick and what the heck does that mean because sometimes I get sick and does that mean I’m going to have cancer and have to get chemotherapy and what is chemotherapy I know you told me but I don’t really get it and I saw kids at the hospital with cancer and they were really sick and am I going to have to go to the hospital and it was really sad when dad was in the hospital and I don’t want him to go to the hospital again because” meltdown, but she only said, “I’m just really tired.” I hugged her and we both cried. I knew what she couldn’t verbalize. Just as I couldn’t always, but when she said that to me, I started to tell her more of what I was sad or mad about. I started to tell her that Mommy was sad that Daddy was sick from the surgery that took the cancer out, or that he was sick with the medicine that they gave him to make sure no cancer would come back. I wanted to give her more words. She may have been just four, but she was dealing with so much. We all were. 

Maddy doesn't always let you in on any worries.

So, when a few days into desensitization Maddy shakily whispered, “Mom, I don’t know why, but I feel like I want to cry.” I knew the pressure of this was getting to her. As a dad, Jason wanted some answers, rightfully so. He wanted, “Did something happen to you? Did somebody say something to you?” answers. But as a mom, I just knew, this was my baby telling me she was just tired; one of those moments. Pressure was building. She needed mom to help her put it into words, give her some consoling, and hug it out. I learned a lot about myself as Jason has gone through cancer and treatments, too, that I can’t do all of this alone, that I need other people to help me, to walk through this with me. I have reached out in the last few years to people I had never considered that I even needed – church, co-workers, Facebook support groups, friends and family; and in ways I never knew I needed – organizations, creatively in projects, writing this blog, pouring myself into work, by sometimes taking a break, and by simply just crying. In what ways do kids have to work out their emotions? They don’t know how yet. It is my job to help her figure that out in safe and caring ways. I hope and pray that I am doing it right.

“Sometimes the biggest act of courage is a small one.”

Happy Birthday, Maddy! Seven years old and one of the most brave people I have ever known. 

Maddy’s birthday was celebrated with light sabers, Darth Vader masks and good friends in our back yard. Nine pals came bounding into our house - swim suits, towels, and flip-flops - dripping with optimism that the rain clouds would clear and fun would be had. The spread – Tie Fighter Ties, Vader Veggies & Sarlacc Pit Dip was ready. Yoda Sodas were poured, the piñata was hung and Pin the Saber on Vader was prepped - and the party had started. 

In fact, the whole weekend was a party. Our weekend was jam-packed with family & friends as we celebrated Madeline’s seventh birthday. Finally, July 30^th, after cake, ice cream & gifts, we said ‘see you later,’ whispered, ‘good-night’ to each other and hunkered down in bed in preparation for the following day – the first day of desensitization. You know that old saying – “Tomorrow is the first day of the rest of your life.” For us it held new meaning. We - Jason, Madeline, and I, were anxious, excited, nervous, not quite scared… just yet. 

Our morning was much like you might think when you are on a tight schedule and in a hurry – late and hectic. Slept right through that stupid alarm & since Jason couldn’t go with us, I was uneasy with the drive so wanted to get a good start. Rushed, unshowerd, uncoffeed, and with sleep in our eyes – we marched on toward West Bloomfield & Dr. Mayer’s office, somehow making up time enjoying the scenic route to avoid construction. 

As we entered the doors, Dr. Mayer’s staff ushered us toward the back wasting no time getting started. Lety, the nurse, gave us a customized plan for Maddy detailing her dosage plan – a blueprint for her entire desensitization program, really. It was encouraging and even hopeful. Dr. Mayer explained the strategy for the day – nobody would ask Maddy any specific questions. No, “Is your throat scratchy?” or “How’s your tummy?” These questions are too psychologically powerful and might sway her into feeling nonexistent itches, bumps or bellyaches.  More general questions like, “how are you doing?” would more likely get honest answers, or as it turned out, sometimes none at all as she zoned out in front of her DVD. 

Within minutes of these explanations, Lety checked vitals & was in with the first dose – peanut flour (dust, really) in a liquid solution. She showed it to me – illustrated its position within the list on the sheet. Madeline maintained complete composure in her presence, took the peanut solution in her mouth, turned to me, waited for the nurse to leave, and crumbled. Great big tears welled up in her eyes, her legs trembled, and she whispered, “my stomach already hurts, mom, it already hurts.” My stomach dropped to my knees. What was I doing to my child? How could I put her through this on purpose? How long will this take and am I cut out for this? Is she? It took every ounce of strength I had to not pick her up, grab our things and leave. Walk out the door and say forget it, we know how to live with a peanut allergy, we can handle that. What we can’t handle is deliberately feeding my peanut allergic baby poison … right? Right? 

Instead, I held her, rubbed her back & helped her calm down, all the while holding my own tears back. Was this the right decision? To make my child feel such anxiety and fear? My heart ached as I decided to stay. Words of encouragement came from family & friends through e-mail, texts & Facebook even if they didn’t know what had actually occurred.  As I spoke to her and held her, she calmed down, turned her attention to the television, she realized nothing was happening & slowly understood she not only could do this, but wanted to do it. She was not anaphylactic, she was not having a reaction, even a slight hive, stomach ache, or wheeze. 

In this entire process – every 15 minutes more peanut solution with an increase in the concentration of peanut protein every other time or so – Maddy just became more comfortable with the process.  I continued to update Jason, close family & even FB. I joked that with every dose increase, she was doing fine, but I was getting a tummy-ache & hives! I knew we were on the right track, though when I asked her how she was feeling and she said “Not good. Great!”  

After a few more doses, though, a mosquito bite-sized hive on her belly told us it was time to stop for the day. We’d been there from about 9:30; she reacted just after 2:00. Fearlessly, she’d said, “I think that is just a mosquito bite from Saturday,” she was ready for more.  Lety swooped in with Benadryl, Dr. Mayer, checked her vitals again and then we just had to hurry up and wait to see if other symptoms arose for an hour.  We were leaving with a smaller dose than expected, but it didn’t matter. We’d started peanut desensitization, we were moving ahead. Maddy and I were both excited about it. Dosage instructions were given, questions answered… it seemed so simple. 

In the hours I waited with Maddy, I only figuratively bit my nails & paced the floor. I poured myself into a creative outlet, and drank more coffee than I needed in one day, but I really just sat and waited with Maddy.  Dr. Mayer actually commented on the fact that I was fairly calm… inside I was a jittery, explosive, mess lying in wait for the reaction that was inevitable. I’ve had much training in being calm for those I love and for Maddy I have always tried to model keeping my composure while remaining open & responsive, especially in times where it could be difficult for her. Prior to the appointment there’d been chats about this being scary, tough, or any other emotions this could cause, but that day, I was cool as a cucumber.  Maddy has been through a lot in her seven short years, this whole family has. And she has always been stronger than I could imagine a child could be. She is the bravest little girl I know.

First dose down the hatch.

Growl Tiger goes everywhere with us.

Dr. Mayer checks vitals after the reaction.

“Sometimes the biggest act of courage is a small one.”

         ~Lauren Raffo

Two Thumbs Up

Every day Madeline faces a threat that many of us will never know. Can you imagine – ingesting food that could make you sick, or even kill you? She does. She knows that threat. She trusts adults she knows to check her food labels for what she considers “poison.” Daily we come across food that is not okay for her to eat – it contains peanuts or peanut butter, it's "manufactured on the same equipment or in a facility as peanuts," or it "may contain" the offender. Allergen statements thankfully labeled for her protection, in reality close calls when only the one that informs us of the actual ingredient of peanuts must be listed. Seriously – close calls, especially as her world and her life become larger, we must have faith, trust, and have confidence in the world around us.

Yet, somehow, my baby girl is amazingly courageous. She’s also outgoing, fun-loving, friendly, bold, even a bit daring. Maddy is clever and loves school - even in the summer she misses math! She has so many friends and always finds the best in people, even the bullies! She loves her BFF’s – Conley and Aubrey and will tell you she ‘hearts’ all of our friends and family and is always asking to get together with this family or that friend, go to Grandma Tyna’s house or just down the road to Grandma, Nanny & Papa’s house. She has an affinity for roller coasters, swimming pools, lakes, and puppy dogs. She has even recently grown to love fishing and got an awesome new tackle box from her aunt, uncle & cousins for her birthday. She has two dogs and two cats that she plays with regularly even if the cats make her itchy. Best of all, Maddy would do anything for any one of you. She is loving, giving and has the biggest heart that reaches well beyond her little body. 

Maybe Maddy’s immense heart is why it seems the ‘bubble’ we do put her in to keep her safe has seemed colossal. Maybe, just maybe, the reality is that the networks of support that care for us and Maddy have been amazing people that have been touched by Maddy’s heart, and ours.  Our support system, our friends, family, and church group have been there for us through thick and thin – and in the last few years that has been tremendous! We've strived for Maddy to have a normal childhood and life even with a peanut allergy. We have learned that we must remain positive, involved, and one step ahead to advocate & educate – ourselves and others as well as we can.  

The threat of anaphylaxis killing our child, though, is what led us to do something more. It led us to Chad Mayer, DO, of the Comprehensive Food Allergy Clinic in West Bloomfield, Michigan. In my quest for education, I’d read about possible treatments, therapies, and the most current research all along. I’d joined the The Food Allergy & Anaphylaxis Network, which has the latest & greatest information in food allergy information. I’d checked out the site numerous times, joined Facebook groups, and did my own research on food allergies. Over the years, I armed myself with information – knowledge is power!

When the possibility of desensitization, or Oral Immunotherapy, came to town, we had an appointment with an allergist in our area that had come very highly recommended by a number of people. I spoke with him for his opinion. He didn’t recommended OIT, stating the long term benefits were not yet known, referencing an article (which I’d read), by Dr. Sampson (Hugh A Sampson, MD, Mount Sinai School of Medicine; Jaffe Food Allergy Institute; http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/) that suggests desensitization is just not ready for the masses. So I went home, somewhat deflated, and listened to our new allergist, whom I’d just met. I put aside all the research I’d done, all the articles I’d read, the FB groups I’d “met” in the process of completing OIT with their children - children with peanut allergies who had anaphylactic reactions when they walked into rooms with peanuts now eating eight peanuts a day. I convinced myself this was the best, that we’d do something when there was a more widely available “cure,” even though that meant  more years of 504 agreements at school, panic at the thought of school parties, birthday parties  and explanations & education to parents about the allergy. Granted we have been lucky in more ways than one with Maddy’s allergy, but as school was approaching I knew another year meant more challenges. It was for the best, right?

At the end of June, we were packing for a baseball game. Imagine my anxiety. I had already called the ballpark and they assured me as much as they could about what she could eat, but of course the park food service manager also added, “We can’t guarantee she will be 100% safe. We do serve peanuts on grounds. You need to exercise extreme caution.” Of course, but we had set out to not make her live in a bubble, to not be anxious about daily life, to cautiously approach activities rather than avoid them, so we were going. Earlier that same day though, her dad and I had been speaking about letting her grandparents take her on vacation for a few days. My anxiety piqued – vacation food was dining out, ice cream - spontaneous eating experiences. I felt the same way when my own mother wanted her for a few days. As she gets older, I’d realized - we have kept her safe, she has gotten comfortable in taking risks and she wants to live life unrestricted - why should I get in her way? So, that day, we made a decision to make a consultation appointment for OIT. Again, our entire family and our friends were supportive, even excited. Weight already began to lift from my shoulders.

Maddy’s excitement didn’t come, however, until we spoke with Dr. Mayer. Jason and Maddy both got the run-down of OIT when we visited the office in July and I learned that Dr. Mayer has the exact same protocol as Dr. Wasserman, a leader in OIT in Dallas. Again, I am no expert, but I’d done much research, followed many parents with children in different programs and had really watched this work! Dr. Mayer spoke with us directly about many different happenings in food allergy research and made us feel at ease with the process. It was exciting to see how she would start, the amount of peanut protein (dust really) and how many peanuts she will eat in the office (24) to “graduate” the program to begin the maintenance process at home. Also extremely encouraging to us was the fact that Dr. Mayer is in no hurry. He let us know that his particular protocol is particularly conservative, so if/when she reacts, her dosages will be adjusted accordingly.  This was going to happen!

Maddy was nervous even as Dr. Mayer walked in, even when he spoke to her. We had tried telling her about the process; her grandma spoke to her about the process. She humored us as we went & said she’d listen but didn’t want to do it. We made the appointment for the first day, Rush Day, the day that peanuts are first introduced into the peanut allergic child’s system. As we headed out the door into the bright sunlight of the day, Jason said to her, “Well, Maddy what do you think?” She turned around at him and smiled her gorgeous smile and put her thumb in the air then said, “No, I mean… two thumbs up.” In her book, Dr. Mayer and desensitization were in!