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!

Celebrate Good Times

Picked out 'Rainbow' after graduation.

Do you remember the first time you tried something really scary? Like really scary? The first time I rode a big roller coaster we traveled to Sandusky for our annual trip to Cedar Point. The Iron Dragon was the big draw that year and though I loved the rides, something about those cars hanging down, swinging side to side, zooming through fog, bugs, and screaming amusement park guests simply freaked me out. My mom (who loves roller coasters), godmother, best friend, and my sister, though just didn’t care – they were going on that ride no matter how much I sobbed, dragged my feet, or told them it was not a good idea. And they were taking me with them.

At ten years old, I wore my anxiety on my sleeve and blue-mascara tears streaked down my face as my mother dragged me toward that horrifying death trap of a ride. I was petrified.  This amusement park ride, a calculated risk that was not going to hurt me physically was tearing me up inside – there was no way, in my mind, that I was going to live to tell the tale of The Iron Dragon. In the meantime, I looked a damn fool crying in that line! Our little group lugged me along, inch-by-inch, rail-by-rail, anyway. My mom knew me well enough to know I sometimes needed a bit of a shove to get myself off the ground. And that’s what she was doing that day. 

No worry ice cream!

Occasionally, Maddy has gripping moments of anxiety about the unknown, too; as many children do I’m sure. Every now and then she will get to thinking about house fires or tornadoes and the devastating effects that could occur.  She’ll hear snippets about the real world - from friends, on the news, that vast world I can’t control once she leaves these Mommy arms. She might read something in a book, think and think, then end up down to talk to us about her concerns. Those nights we talk to her about the ways we keep our home safe, her safer. Rarely, though is she the inconsolable child laying it all out, being pulled by her parents to the front car of the biggest roller coaster of the year.  It’s just not how she works.

In my own 35 years, my fears and worries have subsided some and what’s left, I’ve learned to push up my sleeve a bit, hide what I used to wear so visibly. To a perfect stranger, even to those that know me, as it turns out, my unease isn’t evident most days. Some have even gone so far to call me STRONG. And I’ve believed them, too, so I go with it, “work it,” as they say. 

It has taken Maddy far less time to live strong – to not let this peanut allergy rule her life anymore . She, though, is brave. Braver than I ever was as a child. And she has no need to hide anything up her sleeve. I rarely have to give her the same little shoves my mom had to give to me - and it is a constant surprise to me. 

Graduation came just in time for Valentine's Day Party - phew!

Days before Peanut Allergy Desensitization Graduation, we contemplated, “how long do you think it will take Maddy to stop asking, ‘is it okay for me?’ or to ‘have mom check it’ before she is comfortable eating a new food or even a tried and true?” How long, I wondered more often, would it take me? We were all quite certain these habits would not only be difficult to break, but uncomfortable - intentionally allow her to eat food laced with poison we know just months before would have killed her. Even though we’d watched desensitization working, even as we’d seen her nibbling peanut after peanut, even as we dreamed of free days ahead, I was sure my worries would get the better of me, and then her. 

The Iron Dragon

Free days were ahead, though. Graduation day came and went with exhilaration similar to that roller coaster ride. Maddy’s anxiety was quickly squelched by her excitement and the minute we left the building she began talking about her new life – what she could do, who she would tell. Our other questions were swiftly answered – it took Maddy exactly no time to stop asking to check labels, if food was okay for her or anything at all related. At dinner that evening, she specifically said, “Mom, do not say anything about peanuts.” She ordered her own food, allowed me no time to ask the server anything, ordered a cookie for dessert, and she was fine. More than just fine - she was ecstatic!

Maddy's 1st concert - livin' life to the fullest!

Since then, Maddy has embraced this new identity – readily. She has eagerly tried new foods, jumped in line at church coffee hour and has been elated to tell us, “Do not even look at the label, mom,” over & over. And we have really celebrated together! It is amazing how quickly she has adapted. I have shakingly adjusted to the new identity as well - stuffed my anxieties up that ol’ sleeve and strapped on my OIT safety belt. And just like that 'tween at Cedar Point, as soon as I realize something is safe, and even sometimes good for me, I embrace it wholeheartedly. The Iron Dragon, for instance became my favorite ride that trip – we rode it over and over! 

The night Maddy graduated, our little group brought her gifts & cards and toasted together to this huge achievement, this new sense of freedom for Maddy. Our server asked if we were celebrating a birthday - we couldn’t tell her yes, of course, but it was almost difficult to say “no,” as well. We were commemorating a day in our lives that will go down in our history as one of great importance - the first day of the rest of her ‘new’ life - one that she was ready and willing to jump right into! 

The Iron Dragon photo - http://www.puderluder.com/Rollercoaster3/iron_dragon.htm