Don't Sweat the Small Stuff

From one parent to another, it is not difficult to understand the lengths you go to help your child. When your baby girl scrapes her knee, you get the Band-Aids, kiss the boo-boo and send her on her way. Bumps in the night may result in ice packs and smooches to make it all better or even as far as trips to the ER. Either way you and I know - Mama knows best. Staying up all night to ease tummy troubles, serving chicken noodle soup to feed that cold, or talking her through her first broken heart – it’s a parents’ job to do what they feel is right. When your baby hurts, you do anything in your power to heal them. It is the job you were enlisted to do; it is in our nature as parents to do the little things that make it all better in the end. 

Oral immunotherapy was our fix for Maddy. Our chicken soup, if you will.

Maddy can play sports without worry!

Often when we talk to people about Madeline’s OIT, especially with non-food allergy folk, the discussion turns to food. Usually, they are very excited, as are we, by the idea of this new scientific development they have never heard about and like to hear about all the different things she can now enjoy. Due to the particular protocol that Dr. Mayer follows, his patients are able to eat any amount of peanuts, peanut butter or peanut products they’d like as long as specific rules are followed if they ingest peanuts – no exercise for 2-4 hours, no sleep for an hour, and keep that epinephrine around, “just in case” until who-knows-when at this point. We give Maddy her peanut butter toast or peanut M & M’s, her dose of choice, in the evening, about an hour before bed when we don’t plan any high impact activities, and the epi-pen continues to be a part of our routine.  A small price to pay for such a feeling of freedom and security.

Maddy, even as much as everyone says to her, “I wish the doctor prescribed Peanut M & M’s to me,” and even as she eats them every day to stifle that peanut allergy, still doesn’t like the taste of peanuts or peanut butter too much, so isn’t one to choose either on her own. Due to OIT, however, she may eat any cross-contaminated foods with no restrictions, which has opened up a world of possibilities unknown to her before and somewhat forgotten to us! Our world has changed, for us, tremendously, but for parents with kids without allergies these are just simply normal activities. And somewhat mundane, I’m sure. To us, though, it is downright exciting!

Restaurants out with friends? No worries!

When living with food allergies, your day to day, minute to minute checks for your allergen become so normal, that when the threat of anaphylaxis is taken away it is an amazing relief! Not only the thrill of the idea that anaphylaxis is gone, but the knowledge that she will live real normal now. Not peanut allergy normal anymore… that is unreal!

Thanks to our “new” normal, Maddy can now attend a birthday party without us contacting the parent a week in advance, without having her own special cupcake, or her own peanut free ice cream and that has been just awesome! And thanks to our new normal lives the fact that we can walk into any restaurant and order off the menu without the peanut allergy proclamation makes me tear up almost every time! Our new normal grocery trips save me time and if I dare look at the label, she gives me the most evil eye any seven year old can give – she is simply over it! These small things may not seem big to the average person, but to us – HUGE!

These seemingly minor life experiences continue to allow Maddy to be the person Maddy wants to be and should be – a confident, independent, and now liberated little lady who continues to share her zest for life with the her family and friends! Rather than be separated from those people, she can build better and stronger relationships with them.

Creating better bonds - thanks to OIT!

As an ardent reader and researcher about food allergies and an educator as well, I am reminded often about the bigger picture, too and how kids are affected by food allergies as they age. Maddy is just going into 3^rd grade and we have limited experience with bullying issues in general, let alone in relation to those specific to food allergies, though we had one incident that was scary. In first grade, Maddy was chased by a girl who repeatedly told her that she had peanut butter for lunch and was going to get her. Maddy was freaked, her best friend stepped in, helped her out and by the next day we had the situation well under control. Aside from that one incident, in these younger grades, Maddy had almost always been lifted up, cared for, and protected by her classmates. As a mom and a teacher, I know that times would change as the ages of the kids changed.

A friend recently sent an article to me concerning bullying related incidents and food allergies - it’s NOT a pretty picture. The group FARE, the largest food allergy research group, has been trying to bring some public attention this issue, publishing a public service announcement about food allergy bullying. OIT has at least allowed us to take this dynamic out of the picture – there are plenty of reasons for kids to tease each other, pressure one another, and to, heaven forbid, even bully each other – OIT has taken that smoking gun away from the bullies who would try with Maddy from now on! Maddy is over it; we are over it! We aren’t sweating the small stuff anymore and it is allowing us to not fret over the big stuff later!

 In fact, oral immunotherapy has allowed Maddy to enjoy life so much she doesn’t have to sweat the small stuff anymore, she is continuing to build confidence in ways that I don’t think she would have been able to if she hadn’t had OIT, and she is enjoying things she for sure would not have been able to before. Rather, she is loving it - every last bit of it!

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

Graduation Day!

1st bite... lots more to go!

When it comes to our peanut desensitization journey, I have to say, our story is fairly boring. In the case of OIT and food allergies, though, boring is exciting! Thrilling, actually! It is exactly what you want traveling back and forth to the allergist week to week. You want to know you will be walking out of the office an hour after you feed your child their little bit of poison with no further symptoms, no worries, no complaints. Right on track towards graduation – toward success!

Boring in the world of OIT means we were lucky. Very lucky. Every step of the way. And don’t think we didn’t know it. Every step of the way. Maddy was rarely sick, her body adapted to the dose well, and best of all she had no severe reactions. From the start, Maddy didn’t have to skip a single dose increase – every single week for virtually six months we made our near 85 mile trek to Dr. Mayer’s office to see the ‘ Peanuts Gang.’ Considering some of what this family has gone through in the past years, it was exciting to see this happen so quickly and painlessly. Maddy deserved that - to have something so great in her life go so well. This was a blessing for us – score one for the Gooleys! 

Waiting for their PB & J's!

Peanut allergy desensitization and this final step comes with so many emotions it is difficult to explain just what it all means to a family with food allergies. As many people know, life threatening anaphylaxis takes over your life. Anxiety and fear creep in at the start, heightening as certain realizations strike you - a bite of food could be your child’s last, trust is your only option, and the world is a vast place centered around food! When you grasp the fact that your child doesn’t and shouldn’t rely on you constantly, it is frightening to think of the possibilities. For nut allergy families, simple choices that most take for granted are simply not choices – dinners out, birthday parties, church fellowship/luncheons, and extended family gatherings (and unfortunately, for some - close family gatherings). The weight of a burden you can’t do anything about makes you constantly hope your child won’t feel excluded, apprehensive, or worst of all, bullied by another child, or adult in their lives. 

Best PB & J in town, Lety!

When Maddy was younger it was easy to hide much of this from her, to make it a non-issue - have discussions without her, choose safe restaurants or none at all, skip luncheons altogether. As her knowledge of the world grew, so too did her inclination to be a part of it. Maddy’s confidence, easy smile, and wonderful ability to make friends meant she was, as they say, a social butterfly. We would not have had it any other way. In those early years, we did what was needed to make sure she was safe and so did everyone around us – family, friends, and church members, while allowing Miss Maddy to flourish as an individual. From the moment we enrolled in preschool, we were involved, deep and we never expected just anybody to be responsible for Maddy – it was a team effort. And it was still an enormous task, it was challenging, and it was frightening! 

When I finally grasped that desensitization was the best option for us, my own worries for Maddy were worse than they’d ever been and had reached their tipping point – a place that looked & felt uncharacteristic for me as anxieties regarding the food allergy took over my emotions. It was time to do something different; peanut allergy desensitization seemed right. This family doesn’t tend to sit around and just let life happen to them, especially when there are options. 

Finished it!

Our pride in Madeline through all of this has been no secret. She’s remarkable! As are all the kids we have met along the way & those who will come after us. Writing about our journey is the closest I can come to screaming from the rooftops with excitement. These heroic children have not held back; I’ve seen more nerve from them than I can imagine in most adults. From day one of OIT - when Maddy popped a hive in the office with that miniscule amount of peanut dust in the Kool-Aid solution to peanut flour to her first peanut until now, Maddy has been a trooper. Like us, she sees the possibilities - “Mom, when I’m done with this can I have fortune cookies?” she asks. She dreams big and soon will live big!

Such a relief,,, can you tell I was anxious?

Graduation day came quicker than expected and was a big day for our family. Phone calls, e-mails, and hugs for luck came at us all week as we prepped. Conversation regarding how she’d “take” her 24 peanuts, the greatest amount she’d ever eaten, abounded for days prior. Her entourage prepared for the trip, as well– Grandma Linda, Papa, and Nanny just had to see this happen! Madeline was eager for the day and didn’t show her nerves until just before we walked in the door. She’d finally decided on peanut butter and jelly toast - her favorite PB mode, even if a bit filling, and Steven, her buddy and fellow graduate decided on the same. The two kids settled in as Lety made the most anticipated PB & J’s these families had ever seen. 

I knew OIT had prepared her body these last few months but I was the most nervous I’d ever been. It was hard to keep my anxiety and my pride in check. We were on our way for what would truly be a new beginning, and it was thrilling, and I was certain I would puke!

Proud baby girl!

Nerves calmed though, as friends & staff cheered the kids on for their ‘24 Peanut Challenge.’ Graduation Day! It was quite an event to watch Maddy and Steven share this special day. These two, support for each other now for months, had become buddies – today was no exception. My own anxiety eased as Maddy’s PB & J disappeared and signs of reactions did not appear. Celebrations ensued – faces, lips, and arms maintained normal color, breathing rates did not increase, and heart rates did not race. Prayers were answered. Phew! 

The Comprehensive Food Allergy Clinic was a happening place that evening, just as it should be! Dr. Mayer ran around as he does and our little OIT patients did too – a typical evening at our favorite allergists’ office! An hour after that last bite, though, Maddy and Steven, became the newest Peanut Allergy Desensitization graduates! It could not have been a more exciting day for our family! Tears, cheers, and hugs were shared.

It's their place, you know... at least they think so!

Modern medicine, through Peanut Allergy Desensitization, just handed my daughter the greatest chance for her future.  A future where a simple bite of a birthday party cupcake will not hurt her, or a teacher’s mistake will not lead to the use of an epi-pen a ride in an ambulance, or worse. The worst of all possibilities; unspeakable. This future, Maddy's future, is filled with certainty, confidence and fulfillment. It will now be safer, healthier, and happier. Her future, without the worry of food allergies holding her back, will allow her to participate more fully in life events she simply would not have been able to take part in before, or too frightened to try –  sleepovers, airplane rides, and overnight camps – without mom there to hold her hand, look at every ingredient label, and speak to each and every parent about food lists, the epi-pen, the protocol. It’s an insurance policy we have never had before. Life can and will now happen!

He'll sign autographs... in the form of an RX!

Throughout my blogposts, I have, and will continue to recognize our friends, our family members, and others who have supported us along the way. We love them more & more for what they have done for us in these years and feel closer to them for it. Our appreciation will never be fully realized. They have always understood, empathized, and come peanut-free! They have always taken care of us.

Obviously, though, I would be remiss if I didn’t acknowledge the staff at Comprehensive Food AllergyClinic here - Dr. Mayer, Nurse Amy, and Nurse Lety, we believe, are the most exceptional medical staff to bless this earth. They not only provided us with this amazing gift, OIT, but comforted us, advised us, and guided us through a journey that we never dreamed would become a reality so soon in Maddy’s life. I would recommend this facility to anyone and I would travel 100 times the distance to see them again for what they gave us each week. 

 So happy together!

Dr. Mayer, Nurse Amy & Nurse Amy provided more to us than just peanuts each week. Maddy would have never agreed to this therapy if she didn’t feel safe, comforted, and loved from the get-go, neither would I, for that matter. Dr. Mayer’s office was a home away from home each week where we made many friends - lovely people that we will never forget. Such a bittersweet goodbye when we left the office that graduation day. They provided us with the tools to go with confidence and knowledge of our new found position in the world, not to mention, the comfort in knowing they would always be there. Like others that went before us, though, it was our turn to say farewell and in turn, hello to a world filled with new adventures that Maddy simply cannot wait to try.

Watch out world, here she comes!

High Hopes

Anxiously awaiting the taste of PB.

 Most parents will say their children’s personality shines through early on in life. It’s pretty evident, usually, which of those qualities become their strengths - whether those traits are adopted from your spouse, picked up from you, or were crafted on their own or, rather, with the help of another influence. Our children do eventually become these little individuals somehow melding all of the above into something entirely their own. Even if half of the time we are shaking our head at them in amazement or exasperation, it is incredible to witness watching our children grow up.

At a fairly early age, it was evident to us, that Madeline was a confident little thing. She had a sense of humor that matched her father’s and a brazen attitude that our family likened to my own, a dangerous combination to say the least! Family & friends humorously called her “assertive” for her age and often joked that if at three years old she was able to tell people what to do with such authority, imagine what she would be like at my age. At one visit to the apple orchard with friends, we moseyed along, enjoying the beautiful fall day. Maddy relished each moment, the beautiful weather as she ran through the orchards with our Goddaughter, Aubrey and other pals. She really wanted to get to the pumpkins next and was eager to be sure everyone knew where we were headed. Jumping on out of the wagon, and in front of our group, she let everyone know which activity was next on the agenda. 

Lil' Miss Bossy Pants - Fall 2009

“Everyone, everyone – listen!” she yelled. “We are getting pumpkins next, follow me! Self-assured, assertive, confident, you name it; this kid did not lack it. And I was proud of that. 

She had more confidence than I could imagine. And it had started much earlier than that miniature event planner at The Country Mill. The spring before that particular incident, at just three years old she amazed us all, when she told us she wanted to perform a song for our church’s Spring Fling, a show put on to demonstrate the musical talents of our church members. Maddy practiced and practiced, mostly with her Grandma Linda. Music is very special to Jason’s side of the family and most in the family either play an instrument or sing in a choir and they’ve been determined since Maddy’s birth to pass that on to her. As a result, she loves music and was quite confident the day she took the stage. It was really hard to believe and beautiful to watch as she sang each word of Frank Sinatra’s classic, “High Hopes.” I’m certain I was more nervous than she, but why would she be? She had high hopes! 

Spring 2009

My memory threw me back to this moment when ol’ blue eyes serenaded me recently driving home from work. The memory struck me and I considered the expectations we had when we began our OIT journey. At the start of the peanut allergy desensitization program we had extremely high hopes for the way it would go – Maddy would get through the entire Rush Day protocol, she would increase her dose each week, she would love and adore the taste, smell, and texture of peanuts, peanut butter and everything peanut, and then she would graduate right on time. Ta – da!

Our hopes were dashed from the start - expectations had to be renegotiated every step of the way. That is the way this program goes.

That was hard to deal with sometimes, though. 

She didn’t make it as far through Rush Day as we’d hoped, she had quite a lot of little reactions along the way, and she certainly wasn’t enjoying the peanuts. 

She was to six peanuts at this point and we had high hopes, once again, for her to love peanut butter. We hoped to just get her through until graduation with some more options for her dose. She didn’t like dry roasted peanuts and those Peanut M&M’s were great, but so filling in the morning that she wasn’t eating a nutritional breakfast. Everyone told her just how much she would love the ooey-gooey peanutty goodness they all adore themselves, and we were all excited for something new. Wrong!

Let me reiterate - Maddy had done very well at this point – in all ways she could. Her body had been desensitizing just as it should – the few reactions were pretty normal and not at all bad. She had decided her dose was just that – medicine & she would take it as such, no matter the taste. Now that we were six peanuts in, I was really hoping for the “she likes the peanuts” phase to kick in and it hadn’t, not yet. 

At this point, too, Maddy said, “the one thing I don’t like about this peanut program is that it’s forever.” 

The first taste!

For a mom who had done nothing but eat, sleep, and breathe peanut allergy desensitization program  – this one punched me right in the gut – juuust a bit. 

But -  I’m not a quitter - and neither is Maddy. 

So, we soldiered on.  She soldiered on. 

She gave up on peanut butter for some time after that first try, but like most things, she tried it again and again. And, much like everything else with Maddy, her attitude about desensitization has come around again, too. Her dose, peanut butter, Peanut M&M’s, and peanuts are becoming a regular part of her life. Like her dad, she finds the humor in everything she does, and like me, she takes each challenge on head on. And like the unique child she is growing up to be - she has high hopes; she has high apple pie in the sky hopes!