Where There is a Will, There is a Way

Consultation day - feeling good!

I will never forget the first time I read about Oral Immunotherapy. It was probably the only good thing that I can credit to our first allergist. Harsh, I know, but she did little to support us. She gave us an Epi-pen Jr., told us to stay away from peanuts, and pointed me to the Food Allergy & Anaphylactic Network (now FARE). Eventually, after sorting through a mess of other information, I remembered this tidbit of advice and I joined FAAN. Aside from this, our allergist did nothing – not even an Epi training. So, when a parent like me - desperate for information, anxious to keep her child safe, and frantic for a cure came across news of this possibility, this promise, this hope… my eyes lit up with excitement, eager to know when, when, when… when would my baby be rid of this terrible affliction that could take her life with a little bite? When would this research become reality?

The morning I read that first article - my first article anyway - in the FAAN Newsletter, I knew there would be something for Maddy someday. I put a number on it – within five years, by the time Maddy would turn eight, there would be something to take this Godforsaken allergy away, or lessen the severity of peanut allergies anyway. There were times I’d come across some information and become somewhat obsessed – articles led me to more articles, studies, clinical trials, and interesting tidbits of information – all suggesting that we could hope for a better future where peanut allergies would not threaten her very existence. Patience, and obviously the salty little thing served on every airplane, Asian cuisine, and Easter basket, was my greatest rival. 

My metaphorical toe impatiently tapped as I waited for that cure to hit headlines. Each time we had blood work completed, trained a new person on the Epi-pen, or started a new school year, I longed for a food allergy cure. An urgent feeling tightened in my gut and an ache swallowed my heart when my child said, “Mom, the substitute teacher said I had to have the snack today, but it wasn’t okay for me.” It was disheartening to hear that ‘responsible adults’ put her in danger so many times, but good to know that even as a kindergartner she worked to advocate for herself or asked if a food was okay for her throughout first grade. And though we’d educated parent after parent – this peanut allergy thing was getting more and more difficult for her, emotionally, even if it was something we’d lived with all of these years. This cure couldn’t come fast enough. 

No need to check these eggs!

At this point in my research, I’d advanced my studies to social media, as all respectable scholars might. Not only did I find a group, the Peanut Anaphylaxis Cure Facebook page, but I found a case, a person, a child who had completed a therapy that I could link some research to that made sense - and I wanted it! I wanted it so bad for Maddy I could taste it! I could taste it as well as a peanut butter and jelly sandwich with a cold glass of milk. As far as I was concerned, it would be hers someday – I would will it to happen (insert maniacal laugh here)!

A few things panicked me though – there weren’t doctors near us at the time and the cost seemed like it could break us. Without it being an FDA approved treatment, how could we afford it? We were simply not in a position to do anything but wait. On Facebook I’d begun to see a few people who were doing the unbelievable – traveling many miles to a doctor either by car or by airplane, and even more unbelievable – relocating to get their children to a doctor, university, or hospital to provide treatment for peanut desensitization. My jealousy set in a little, but reality pushed me down. That would never be our case – our jobs held us home, not to mention other realities – house, health & family.

Our first allergist was the first allergist I ever spoke to about peanut desensitization. She simply told me that it was not something available and left it at that. Our second allergist I’ve written about before – a highly recommended man who spoke to me as an educated person regarding food allergies, just didn’t believe in OIT as an option, especially in private practice. I spoke with him at length about it and respect his opinion. In fact it weighed heavily on our own decision, but so did my own instincts, my own education and what I had seen occurring with OIT in other people (http://maddys7yearitch.blogspot.com/2012/08/two-thumbs-up.html).

My family has had great luck with a few doctors; we have also had not so great luck with many – some that have changed our lives dramatically. We have been in enough offices to know that when it doesn’t feel right - get another opinion and don't feel bad about it. Doctors are human, not superhuman – they make mistakes, have opinions, and they can’t know it all. A doctor may or may not have even the same amount of information as you about a subject, believe me; we have learned this the hard way more than once. When I asked our first allergist about a new test that was gaining popularity in the allergy world at the time, the uKnow Peanut Mollecular Allergy Test, which assesses the blood for specific peanut proteins to test for anaphylaxis, she knew nothing about it and asked ME to send her information, rather than research it herself – didn’t even write down the name! It was ridiculous for us to think we should be taking the opinion from an allergist we had received no support from and then an allergist I’d only just met, no matter how highly recommended! A consultation with the man completing OIT was in order, even if it seemed scary. Losing Maddy to a cross-contaminated cupcake was terrifying, scarier even than a consultation. The time had come to make a decision – OIT was now within our reach, we had to check it out at the very least. 

Walking into Dr. Mayer’s office, we were anxious – that she wouldn’t qualify and maybe a little that she would. We also knew that OIT is not FDA approved. But the numbers – the amount of children it is helping - don’t lie. It is working and it is working well. Our visit with Dr. Mayer made me feel comfortable – it aligned with much of what I had already researched - from others, books & on-line - and it educated Madeline and Jason perfectly. Jason was especially reassured by the fact that she isn’t taking any kind of pill or something unnatural and if something did happen, which was unlikely – we were trained.  And as for the cost, we were more than happy to find out that the office worked with our insurance company. Another bonus in this journey! 

Panera! A new favorite! Not available to her before OIT!

Dr. Mayer had the will to treat food allergies, a passion for it, and he had the knowledge and the skill. We trusted him.  He had found the way by working with another in his field – an experienced doctor that shared his understanding of food allergies, Dr.Wasserman of Dallas Allergy Immunology.  Dr. Mayer had worked for years to find the perfect time to enter into food allergy treatment – he didn’t rush in to publish a paper, make a buck, or get in while the gettin’ was good. His passion felt true. We liked him, liked the office and liked what he had to say. Neither he, nor I entered into this without the necessary education and a lot of thought– his was the kind we needed in a doctor, mine was that needed in a mother making an informed decision. Both so very important in this partnership. Our family felt an immediate trust and bond with Dr. Mayer that no matter what, he was in it for the same cause - Madeline. We went in informed, though - we researched before hand - about the treatment and about the doctor. We didn't go into it with one opinion or one article source. We advocated for Maddy and ourselves by being informed patients and parents. Dr. Mayer has always treated us as such.

OIT was right for us and continues to work in this family. Much like any parent – we would do anything for our child, so we just had to know and make that trip across the state. We had the will, we found the way, and it just made the most sense. As you may well know, we are all so glad we did - just think of the possibilities it will bring for our family and for other food allergy families in the future!

Back to School with Peanut Allergies

It is a busy time of year for us - sale signs adorn store entryways, deal flyers stuff our mailboxes, and the Target ads get funnier and funnier. Maddy’s birthday usually marks for us a silent countdown until those dreaded words are uttered in our house… "almost time to go back to school.” I don’t know who says the words first, certainly never me, though I may be the one who begins the lists in my head. In the home of those suffering from food allergy, back to school does not only mean an uptick in the good ol’ budget due to extra pudding packs, lunch meat, and Ziploc bags. Unfortunately, to parents of children with food allergies, back to school is a time of high apprehension and concern, no matter how many times you’ve been there, done that. 

Peanut desensitization holds many new promises!

Each day, our baby leaves our arms and is welcomed into those of the cold building called school where every child is supposed to feel belonging and welcome. I must trust they will take care of her for the day – feeding her snacks and lunch; wholeheartedly I need to have faith in a system that tells me that if an emergency occurs they will take the same care I would. Every day. Since the beginning of our desensitization journey, this thought has loomed. It came up at almost each conversation with Dr. Mayer and often with others, obviously it worried me. School. How would desensitization affect Maddy at school? Better yet, how much more was I going to have to worry about her being at school than I already worry about her with just a regular ol’ peanut allergy? The truth for food allergy families is that it is hard work. It is hard work to make sure your child feels safe, healthy, and happy. 

If you have a child with a disability, going back to school means reiterating your situation again and again... and again.  It means constant communication and being proactive with any and everybody that will listen, come in contact with your child or anything your child might touch. It is meetings with school nurses, teachers, and parents. It means 504 meetings, accommodations, and explanations. My checklist does not consist of just pencils, markers & crayons, but food allergy action plans, doctor’s signatures, and epi-pens. It asks questions like, “Who on your staff has been trained with an epi-pen and understand what anaphylaxis looks like?” and “Does your school have an epi-pen in the building, it's own prescription?” and also “Who will carry her epi-pen when there is a field trip?” even as far as “What type of sanitizing product do you use and what will you use to clean the tables?” Questions that make me nervous, squeamish, and teary-eyed, but necessary nonetheless. Interestingly, this is not a checklist that was handed out at Kindergarten round-up, Open House, or even at our first 504. This checklist is one made up along the way, as I’ve learned, listened to others, and experienced the hard way. This checklist is ever changing and growing. 

1st day of kindergarten.

We had always had great experiences with Madeline and managing her peanut allergy for a number of years even. She didn’t attend daycare, we had grandparents and a family friend that helped with that. We attended a cooperative preschool where I was tremendously involved on the executive board and the school opted to go entirely nut free for Madeline and another student with a tree nut allergy. We were involved in the community. We didn’t have just great luck, but had great love for these people, our bubble. That is until our bubble needed to become just a little bigger. 

Excited for school!

In kindergarten, Maddy was in a peanut/tree nut free half-day classroom. Since she wasn’t eating lunch there, and the teacher was a parent of a child with nut allergies, I felt comfortable with policies she had put in place – no peanut/nut items for snacks, no bakery items for birthdays and if any of these came in they were not to be used. Sounded good. I spoke to the teacher well in advance and she came recommended. Getting better! We went in at open house, spoke even more, I donated wipes, extra snacks, talked to the aide about her allergy, about the cancer situation at home. All was great!

Wrong! Slowly, the truth started to come out. Policies weren’t being followed. “Just in case’ snacks quickly ran out, which told me Maddy wasn’t comfortable with what was being served or her teacher knew she shouldn’t have what the parents provided. Parents weren’t being educated about how to read labels, although the teacher sent weekly newsletters about classroom events like “Lucky the Leprechaun,” Reading Buddies, or Quotes of the Week home. The teacher wasn’t holding up her end of the deal and I was certain Maddy wasn’t letting us in on the truth about her feelings about it all just yet. She loved her teacher and didn't want to say anything bad.

Finally, Maddy told us in tears that a substitute teacher told her she had to eat the snack provided or not have a snack at all, I finally snapped like the salty pretzels being served that day. The pretzels were bagged in separate Ziplocs with no ingredients provided – again, against the initial policy – not only do we not know what could be in the pretzels that could make Maddy or the other peanut/tree nut child react, but what cross contaminants could be lurking on the hands or counter of the person’s hands that bagged those pretzels? Yuck! So, I walked in prepared to calmly discuss this with her. I also knew that this wasn’t the first time the snack had been okay’d against the policy this teacher had set forth. She needed to figure something out here. Policy wasn’t being followed, Maddy felt terrible… she’d see the problem. Wrong again! In my emotional state, Jason on chemo, my baby being mistreated & just starting kindergarten, and all this while I was working full time - I was pretty well a wreck. 

The girls at the office all getting their dose near the same time.

Her reaction was not what I expected. Rather than apologize, she went on the defensive, pulled Maddy in, asked Maddy what she should have done. Even at five years old, my daughter knew what to do and she did the right thing. She had asked for a different snack. This just made me cry (like I said, I was not in my top emotional state). This teacher was on a a power trip. Rather than do the right thing, she chose to mess with the wrong mama! It was on!

The rest of the year only went downhill. At one point I learned that Maddy and the other student with food allergies had been asked to leave the room so the other kids could have birthday treats from a bakery. There was even one celebration when the children were a part of a celebration where two very famous letters of the alphabet get married (I’ll give a clue… you very rarely see them apart, like in the words queen, quill, and quart). Everyone was invited – parents were told at the beginning of the year, children were given roles in the wedding, and a real wedding cake was ordered. The kids were excited. Maddy talked about that cake and how she hoped it was okay for her. Not one time did the teacher contact me in advance about what I could to help in preparing Maddy, or to help make a cake, find a cake, or help at all. Mind you, I was a helper. I did many things, donated, provided extras for other students. The wedding cake was not okay for Maddy to eat. Let me repeat. The wedding cake was not okay for Maddy to eat. It was the first thing we did when we arrived – look at that cake. By that time in the year, the teacher and the aide in the classroom were avoiding us, it was that bad. They knew. They knew they did not do right by my daughter. It was a sad state of affairs really.

Even as I write this I am fighting back tears. I am a mother and a teacher. It breaks my heart to think that my daughter was treated like a second class citizen in a classroom because of her allergy, a disability, something she has no control over, never asked for, and for even a split second was made to feel unhappy because she couldn’t eat a cupcake. That is exactly what happened. She told us that it made her sad that she couldn’t have the same snack as everyone else. My back to school list really includes a wish, really. I bet you can imagine what it is.

Just waiting for the day when peanuts aren't an issue at all!

Luckily, we are past that kindergarten year, and have moved on to a school and a plan with a much more responsive system in place. I thought about this as Dr. Mayer, Nurse Amy and Nurse Lety, worked with Maddy this time around. She increased her dose with very little problems - a mild tummy ache, but nothing serious and no hives this time – amazing!!! As they handed me the food allergy action plan (which Dr. Mayer said next year we will not need – seriously?!?!?), I still prepped myself to educate, advocate, and explain, explain, explain! As parents, no matter what the situation, no matter how great the school, the educator, or administrator, we will always be our child’s first line of defense. Always.

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!