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

What's It To Ya?

Greeting her upon arrival.

 Recently on a Facebook thread, a question was posted on the wall of one of the allergy discussion groups I frequent. The question is loaded. It is subjective. And in my opinion it can only be answered in one way, yet it had so many responses. The question: Is it worth it? 

The woman wanted to know if it was worth it to try peanut desensitization for her child; if it was worth the possibility of it not working. She wanted to know if her child’s “numbers” matched any of those that could be problematic or if her child could even be eligible for Oral Immunotherapy. Would it be worth the trouble, the consultation, even attempting.  

Waiting to eat that 1st peanut.

Now, on-line I don’t chime in on a large number of things. It seems that much has been said, argued about, or is simply not worth the time it takes to type. Often, I don’t feel I have enough information on a subject, I haven’t done enough research of my own to put in writing my personal opinion - I don't want to look like "that idiot," you know who I'm talking about! I’m not saying that I never add my two-cents, or have an opinion; I certainly do. If you and I were sitting next to each other, you’d certainly get a good eye roll out of me. And if I’m really passionate about a topic, you might never get me to shut up. It just needs to be something that lights my fire when it comes to a Facebook thread or other internet chat. 

The first face. Yuck!

Her questions caught my immediate attention though, because I remember those questions running through my head. I was there once, hemming & hawing, waiting for an answer to come to me. Expecting one person to tell me the right thing to do; the best thing to do. Hoping for someone, something to tell me the best answer for us, for our family – telling family members that this is what our decision was, just waiting for them to disagree and give us a better option. Eventually our right answer came to us, for us. Just like it will for her. After 35 – 50 people chime in on that particular thread, after she researches hours upon hours on the internet, chats and chats on different sites, talks to every person she can about the issue, discusses it with her husband, her family members, her doctor, gets a first opinion, a second. Finally she will rest upon a decision. Finally. 

Getting the taste out!

I came upon this question, 'is it worth it?' right around the time Maddy ate her first peanut – a day we will never forget. Up until this point in her life Maddy had not really tasted anything resembling a peanut even. She was only two years old when we’d learned of her allergy. She’d never been one to try the peanut butter alternatives; she’d always thought they too closely resembled PB for her tastes - that texture & taste was alien to her. Desensitization treatment to this point had consisted of increasing amounts of peanut ‘dust’ in a fruit juice concentrate. And then as the flour became too much to mix into juice, we mixed the flour into applesauce, pudding, whipped cream, or even ice cream. It eventually becoming more & more difficult to hide the burnt peanut flavored flour as it increased in quantity. We were finally to that first peanut with high hopes of her loving it! 

That wasn’t quite the way it happened. Maddy’s entourage followed her in that day - bulbs flashing, videos rolling, and cheering her forward. Maddy hid her nerves with smiles, jokes, and a wall of confidence like no other seven – year old I have ever seen. Nurse Amy had Maddy’s first peanut envelope and a giant smile waiting for her the moment she walked in the door. Vitals were checked, cameras were loaded, and Maddy’s shaking hand was out ready. The first bite was taken, though quickly and with a confident ease and then came the faces. Oh, the faces. She did not like those little peanuts, maybe as much as they did not like her little body! This time, though, they each accepted each other. Maddy made faces, ate the peanuts, and the peanuts accepted that and did not react in her system. We had balance! 

Always such a good attitude, though!

So she ate them, and she ate them. And she kept eating them all week long. She made terrible faces when she did it, but she did it like a champ. She had no reaction to them because her body was and is doing exactly what it is supposed to - becoming used to this foreign substance that it once needed to attack. Desensitizing. Amazing!

A few recent pieces have come out regarding desensitization that are important in the allergy world, especially to allergy mommies & daddies. One study, in relation to the effect OIT has on a peanut allergy patients’ quality of life after the completion of a desensitization program. The conclusion? And I quote, “peanut oral immunotherapy significantly improves food-specific quality of life.” Duh! The children (ranged in ages 5 – 18) found improvement in a number of areas - allergen avoidance, dietary restriction, risk of accidental exposure, emotional impact, food-related anxiety, and social and dietary limitations (see the abstract here) . More recently, in my mailbox, was the “Food Allergy News” bulletin from the Food Allergy & Anaphylaxis Network that highlighted an interview with the American Academy of Allergy, Asthma & Immunology president, Wesley Burks, M.D. - blah, blah, blah… right? His point, though, was that, along with two other possible treatments coming up, with Oral Immunotherapy, “we know that the threshold for these children will go up during treatment and that we can achieve a desensitization effect in most patients.” . So, the real question, to me should really be, "why not?" All signs point to yes, It is worth it! Yes, yes, yes and yes!

Such a smart little girl!

I pointed out to Maddy, again, my amazement of her - that she was taking this on, eating peanuts when peanuts were her poison and that she obviously had distaste for them. Maddy told me, “even if I don’t like the peanuts, I’m going to eat them. They’re just my medicine.”  Have I mentioned to you that she is just seven? Such a smarty!

Each morning and night – when she is eating her dose, I have been amazed at her attitude and gumption. She has been nothing short of incredible. At this age, to understand, be challenged even, to complete this program no matter how bad it tastes! No matter how hard it is to wrap her mind around the fact that she is eating a peanut, poison. Because the reality is, it is worth it, in the long run, it is absolutely better for her to know she won’t accidentally ingest something at a birthday party, a Christmas party, or something as small as a bite of a cookie. Even if she has to eat peanuts every day for the rest of her life, she knows her safety and her life are not just important, they are everything to us. Her life & livelihood are worth it!

Take Care Now Y'Hear!

175 mgs and a smile!

Jason and I have always taken great pride in the balance we’ve had in our lives. We’ve always had beautiful friendships with a long-time support system, upheld a strong relationship together, and have had an amazing family to help us raise this gorgeous child of ours. We did this happily, healthily, and without major incident for some time. Sure we had the same problems as everybody else – not enough money, time, or resources as the rest of the world to get our yard work done, keep our house clean, or even to go on a family vacation every single year. But we were and still are a happy family with few complaints. We had each other! Then, food allergies hit our life and we had to adjust. No problem, no problem – we adjusted. Then cancer hit, as well. We adjusted then, as well – big time! Life happens. When life happens, though, balance is thrown off. It takes time, energy, and a lot of work to maintain any semblance of balance and let’s face it, taking care of ourselves is one of the first things to go and one of the most difficult things to preserve, even if we know better!

250 mgs! Biggie!

Maddy was diagnosed with food allergies when she was just over two and it was devastating and difficult – how do you keep a two year old safe when you have so many plans for her? How does this fit in with school, sports, life… how do I leave her with anyone else? I questioned everything we did with her or without her. Somehow we took that idea of balance, though and went with it – modeled with her involvement and caution and taught her how to take risks and be safe at the same time. Food allergies are an ongoing management issue, though, as every mother and father that deals with them knows. No stone goes unturned in planning every daily activity weeks in advance, going only to restaurants that are recognized, calling caterers of weddings or skipping them altogether, preparing with Vacation Bible School coordinators in advance, training people to use Epi-Pens, helping with food menus, bringing in extra snacks, preparing meals … planning, planning, planning. Anything to keep your child safe, happy and healthy, even if it throws off the balance of your healthy, happy household. 

Maddy cuddles with Dad on her birthday.

Jason has been treated for cancer for nearly three and a half years now. Of course this news was overwhelming and shocking. At 32 years old, who could have imagined such information? He started with a colon resection surgery in July 2009, 4 days before Maddy’s fourth birthday, which led to his first six – month round of chemotherapy.  The following fall, a PET scan revealed the colon cancer had traveled to his lung, requiring a lung resection surgery and 6 more months of chemotherapy. We were exhausted at this point, yes, but we had life to attend to. After finding another small spot in his lung then, he received six weeks of radiation, and continues to receive treatments of a drug called Avastin, which is to prevent the growth of new blood vessels that feed a tumor.  Amazingly, my husband has had tremendous health otherwise, the most positive attitude, and a ridiculous sense of humor that has kept him and myself moving right along. Aside from certain chemo days, he has worked right through most of his treatments, even receiving a promotion to detective along the way! I mean, really, the man is my hero. He is an unbelievable father & partner in my life, even on our worst days, I love him more today than I did the day I married him. Something most people are blessed to not know is how much cancer can test a marriage. You may believe ‘the big C’ would bring you ever closer, and it will. But there are also times it tests your limits, hurts your heart, and throws you both off your equilibrium. 

A good friend of mine, a math teacher, has told me many times, “everything has a tendency to disorder.” And she is right. Ever notice your house cannot stay clean? Your car? As soon as you check off items on your to-do list, you realize you’ve forgotten a few? It takes work to keep yourself up as well!

I will be the very first person to tell you, “be sure to take care of yourself,” when you are in time of need especially since I have been there myself, but I’ve recently realized I don’t follow my own advice. I know moms are their very worst enemies when it comes to taking care of themselves. They just do for everyone else before themselves, so much until they are worn out entirely. Usually it’s moms that don’t get enough sleep at night, skip exercise routines, forget a doctor’s appointment, forgo a shower, a meal, or drop their own hobbies or interests all together for their children and families. I’ve heard many a conversation about forgetting to look in the mirror even before walking out the door! 

Spoons!

There are many things in recent days that have made me realize that I am not taking care of me. I went to the dentist for my annual cleaning only to find out that my annual cleaning hadn’t occurred since before Jason’s diagnosis! I remember cancelling the appointment; I had no sick days left due to his chemotherapy and didn’t feel that I should take any off for myself! I simply never rescheduled. I didn’t even realize it had been so long, I just went about my business taking care of my family. There are times that I just don’t know how I do all that I do! And then I look around my house and see that everything has found itself in disorder and dig in again. Because we do what we have to for the ones we love. 

It has taken me a lot of time to realize a few things about my life and those things remain constants. I have to find time for myself, time to do the things I love, even if it is terribly difficult. Last year I joined a singing group and perform with them twice a year. I love the people and love the joy in singing and performing, even if I’m not the solo act. Also, every now & then, even if it isn’t a regular thing, I have got to have an occasional ladies night. My girls - I love ‘em, I laugh with ‘em, and I couldn’t live without ‘em. They know what I'm talking about and when I'm talking about it – my work girls, my PTO girls, and my college friend girls! Man, I have great friends! On top of all of that, my family – I have to get home now and again, for a good ol’ game of spoons with the fam! Isn’t it nice when you know that you can just go home, get centered, and play a game with your family? It is always good to go home. These things I must have to keep me sane, keep me, well, me. A healthy mommy is a happy mommy!

It's only up from here!

Maddy’s peanut desensitization has become our focus. I’ve drawn that line in the sand for many other activities in my life. I’ve dropped many things that have lost importance to me and now I am beginning to bring focus back to things that are important; one of those things is me. And the balance shifts – the scale is different than what it was when Jason and I were first married; some things remain important yet others have changed. I need to figure out where we all fit and how. Such is life now. What hasn’t changed is that I am just as important to this family as I always have been, and in order to give them all of me, I need to carve out time for me, take care of me. 

Peanut desensitization takes full commitment from everyone involved and even though Maddy practically flew through the weeks of October 24^th with 175 mg and October 30th with 250mg of peanut flour, there are always worries, so taking care of myself is important. She flew through peanut flour so easily though, that it began to seem too easy, almost boring! We began to knock on wood, and “wait for the other shoe to drop” kind of easy. Halloween came and went. Talks of “next year” and the candy she will be able to eat passed our lips. As she screamed through the neighborhood, our friends and family remarked about how her allergy hardly slowed her down anyway and how next year will be so amazing – next year, next year, next year! Hopefully next year – we'll be that happy, HEALTHY, balanced family again!