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!

That's My Girl

Excited to try something new!

New things are difficult for most of us. As adults it is especially difficult to think about new friends, new places, or adopting new routines into our life. I’d really like to think when I am approached with something new I will jump into it with a great attitude - full force with energy and positivity. The truth of the matter is, though, more often I hold back a bit, allowing my reservations to keep me planted in the same place time & time again. Kids, though, usually are not this way. They are amazingly versatile, generally more forward thinking than us, and are more capable than we ever imagined them to be.

Maddy’s proven this to me time and time again in our journey toward freedom from food allergies. She has been nothing short of brave – ingesting this poison each day, twice a day in order to become eventually immune from it. There have been times she’s struggled with the flavor, especially just after she tasted her first peanut.  Some of those times I have joked with her. “Okay, I’ll let Dr. Mayer know we’re all done,” I’ve said playfully.

Quickly she’s replied “No, no! They’re not that bad!” And down the peanuts go!

5 Peanut M&M's = 3 regular peanuts

And who’s to blame her? All her life she’s been scared of anything resembling a peanut, peanut butter, food cross contaminated with peanuts, and has been told to stay away from those offending foods as well. She is at the age where hot dogs are considered their own food group and chicken nuggets from McDonalds are “like the best chicken, mom!” If given an opportunity to make her own dinner she would easily make cereal and if Dad asks about picking up dinner, she quickly yells, “Pizza!” at the phone. She enjoys fruit and vegetables, but much like most kids this age, she must be served the colorful foods in order for them to make it into her mouth and thus her belly; so getting her to like not just a new food, but a food that has been deemed toxic to her an entire lifetime is simply not going to be taken down easily. Those peanuts were NOT her new favorites! She was adding them to her daily routine, however, much loved, they were not!

Nonetheless, the weeks did fly by, quite quickly, I might add, after that first peanut. And, like we hope in OIT, they were relatively uneventful. Uneventful is actually rather exciting! Which means NO REACTIONS occurred – no hives popped their ugly heads, no tummy aches cramped our style and no fevers forced their way into our evening plans… nothing happened at all. Life was good! 

Maddy, as I’d said, did not like the peanuts, but the peanuts were tolerating her. Better yet, her immune system was holding strong, and as far as I was concerned was strengthening. My baby was eating peanuts! Every day! And by the third week of peanut dosing, she got a new treat – Peanut M&M’s. This chocolate covered peanut delicacy came with a whole new set of faces not nearly as awful as the plain peanut faces. As the weeks have gone on she has grown to like Peanut M&M’s a tad more than dry roasted peanuts. Hopefully we will get a peanut lover out of her in the long run!

These kids all amaze me!

Her logic and attitude that the peanuts though, her dose, are medicine is flawless; inspiring really. This outlook keeps her head in the game. Nothing is keeping her from that end goal – her eyes are on the prize – OIT graduation! I’m telling you - Jason and I have not even one time had to fight her on taking her dose. Since the day we have started this program, since the minute she decided she was in it, she jumped in it – with the energy and the positivity I spoke of before. Kids are amazing and she is a remarkable little girl. She is becoming an amazing little lady, and will one day be an outstanding woman. 

I told her this exact sentiment as we were driving home from the allergist’s office one day, “I am so proud of you for doing this you know,” I started.

“Why?” She asked. I really don’t think she feels it is an option to not complete this therapy. I remember the conversation so well. It astounds me that a child her age could have such awareness about herself. 

“Well,” how could I word this and do it without tearing up. “When I was your age, I’m really not sure I could do what you are doing – eating peanuts every day, visiting the allergist every week. I think you’re really brave and I’m proud of you.” 

She paused a second, silent, and then said, “If I were your mom, I’d make you.” 

Love this girl!

“What?” I said. 

She replied, “Even if you didn’t like the peanuts, even if you think they are not good. It’s the best thing to do.” 

I’m proud of the little lady she is and I think I know exactly what kind of woman she is going to become… anybody else have an idea?

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!