Bite-Proof

Starting out her b-day right!

Exactly one year ago today, Madeline and I sat in an exam room in Dr. Chad Mayer’s office, Comprehensive Food Allergy Clinic of Michigan, for her first day of OIT, Rush Day - she was given miniscule amounts of peanut flour, dust really, in juice. Every 20 minutes, Nurse Lety came in with more of the offending liquid and I sat nervously awaiting a symptom to appear. Maddy began OIT the day after her 7^th birthday with tears in her eyes from the anxiety that filled her, though she allowed her nerves to calm as it quickly became clear the little bit of peanut was not sending her to the hospital that day, or any day forward for that matter. Oral immunotherapy or peanut desensitization is a dream come true as far as we are concerned; the answer we had been looking for to solve our food allergy problem and today – our one year anniversary of the day Madeline began OIT - we celebrate this miracle!

In light of the most recent events to hit the news, I am extremely thankful that we found private practice OIT when we did. Natalie Giorgi, a young teenager, just 13 years old and anaphylactic to peanuts, lost her life after mistakenly eating a snack with peanut butter in it at a summer camp with her family - even after multiple doses of epinephrine were given. Multiple doses. The family reports that they were diligent about the peanut allergy even though Natalie had never had a severe reaction, just as many food allergy families are. Just as we were before OIT.

Enjoying the day!

This story has rocked the food allergy world. It’s rocked the world of anyone who has a food allergy plan because so many of us feel safe that our plan will get us out of a sticky situation if ever needed, which we hope beyond all hopes that we never do – I’m sure Natalie’s father, a doctor, felt the same. The epi is our security blanket and when we hear a story so devastating - it’s terrifying. Natalie’s story hits too close to home for those of us who have lived with food allergies, the possibilities sound all too familiar.  This could be our child – home or away from home. Parents of food allergy children need people to understand this is why we “hover,” – why we stay for birthday parties, why we call ahead to check each menu item, to look through ingredients lists, or bring our own food. Food allergy parents cannot simply drop off their child, let them gobble up cupcakes, candy, or even homemade fare. It may seem obsessive but a FA parent must be overly concerned with anything that comes into contact with their child’s hands or lips – toys, desks, baseball bats, especially food. To an outsider, it may seem overprotective, but to parents of children with food allergies, it just makes sense.

Madeline turned eight years old yesterday; today she celebrates one full year of OIT. Much like I imagine the Giorgi family did, we lived, we breathed, we slept food allergy. We were raising Maddy to be diligent, though, to ask questions about her food and, like Natalie, she had never had a severe reaction. Until OIT, we worried, we became anxious, and we fretted about “what could happen if.” And as she became older, we began to keep her from things just in case there was food involved or because we couldn’t be with her. In fact, next week, she will attend her first ever summer camp – without us. OIT allowed that to happen. Food allergies ran our life because we needed her to be safe. A world of possibility has opened for her – happier, healthier, and safer.

When peanut allergy desensitization entered into the picture – our picture - we felt safer almost immediately. As she progressed into the therapy, graduating from the program, and reaching the maintenance phase almost 6 months later, we never looked back – we didn't regret a moment. This was the best decision, our family could have ever made. This week’s news solidifies that decision in our minds. My heart is heavy for the Giorgi family and my prayers go out to them deeply. I can only imagine the grief they must be feeling. 

We really know how to party!

Numerous articles detail the horrific events surrounding the death of Natalie Giorgi and many try to analyze what went wrong, including varying anaphylaxis plans between allergists. While reading these, I can’t help but think about our last year and where we could be without OIT and the appreciation I have for our doctor, our supportive family and our friends. I was especially taken back to one Sunday in particular. As it turns out, I’m not very good with dates. It was a few months ago, though, well beyond our OIT graduation date - we’d relaxed well into a new routine of allowing Maddy to grab her own snacks or treats at church functions and more. After she was given the “all clear” from the good doc, she jumped right into eating anything she wanted, and asked us to stop reading labels from the get-go, and except peanuts and peanut butter, still her least favorite flavors, she was trying lots of new things! OIT suited us, especially our happy little Maddy!

So, when she walked over to me in the fellowship hall at church and said, “Mama, this is peanut butter, I don’t want it,” out of pure habit my heart immediately flip-flopped, dropped about two feet, and a slight panic rose in my chest when I saw the gigantic bite out of the large peanut butter cookie. The words tumbled out of my mouth as I tried calmly to look her over, “Are you ok? Does anything feel funny?” But my body relaxed when she said, “Yeah, I just don’t like it.” Phew. Bite-proof.

Thank you, OIT. Thank you, Dr. Mayer. One year ago, our story may have been very different. One year ago I may be like those of you also wondering - when? When do I give the epi-pen? When do I give Benadryl? When do I call the ambulance?

I am glad to have that anaphylaxis plan in place, but I understand that it is one thing to have that plan and those medications in hand and yet another to live through it in an emergency. I am thankful each day for this new life that OIT has allowed us. 

It is more than just bite-proof, more than cupcakes at a birthday party or new foods in our cupboards. It is beyond all of that; something immeasurable that words will never explain. And for that I am grateful. 

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!

Agree to Disagree

More memories like this, please! OIT was for us!

Have you ever argued with your husband? Done the unthinkable - actually gone to bed upset or even downright angry? Remember that advice given to newlyweds, “the secret to a long marriage is to never go to bed mad – kiss and make up even if you don’t agree.” I don’t know about you people, but that is just not the way it always works in my house. For posterity’s sake, I may pass the same advice on to my daughter, but realistic – I’m not so sure.  Now that we’re all grown-up, though, it’s important we recognize this as an important part of being mature, responsible, and civil models for our children – we can agree to disagree and move past it, even learn from it.

My husband and I sometimes disagree. There, I said it. Finally! We can quit hiding it from the world! And, to make matters worse, there are times when a good ol’ discussion turns into one of those good ol’ healthy arguments when one of us just can’t seem to see the others' side. Say what? Tell me we aren’t the only ones. That going to bed happy thing… good theory, not always highly executed – and never once have we run to write the divorce papers up! We are stronger today than ever – for these experiences, these arguments, they help us learn from and about one another.

In the world of food allergies, there are many strong personalities - resilient and smart people who are trying desperately to do the very best for their babies. As the incidence of food allergies has increased, affecting up to 15 million people in the United States, so many of those children - 1 in 13 of those children, in fact, (http://www.foodallergy.org), so too has the need, the want, the hope for a cure. Along with this spike in food allergy we have seen the options for networking – e-mail, Facebook, blogs, and texts making our world smaller, allowing those with similar afflictions to become closer; making us feel less and less alone – creating small communities from a world so big that it once felt too overwhelming to comprehend it all alone. Support groups do not hold the same meaning as they once did - we now are able to FB a group for advice & receive instantaneous responses - Benadryl, Epi, or emergency room for a child reacting to an allergen? Years ago, a support group would have been there - after the fact. A different world – full of immediacy and information - creates a different a world jam packed with personalities sharing their experiences, an opinions all at once.

Stronger and smarter today and loving it!

Those same strong personalities – the ones that are creating groups, blogging, spreading the word about food allergy news are also the ones that are ‘putting themselves out there’.  They are taking risks by sharing their experiences with each other – with people they don’t even know until they set foot into cyberspace. I, for one, have greatly appreciated this, by hearing about their lives – their successes, their mistakes, and their heartaches. OIT is a journey not many have even started, let alone completed - Maddy was one of the few in this state to begin working with Dr. Mayer as a peanut desensitization patient when she began OIT! So these networks were not only important, but essential to us.  As a blogger, I am one of those people, too – our story, my opinions, and my questions are out there and since I “can’t please all of the people all of the time,” I try desperately  to be respectful to all of the people all of the time, even if I don’t agree with them!  And if you don’t agree with me all of the time, that’s cool. As long as you understand I don’t agree with everything you write and you do. You & I - if you’ve accepted me into your multi-media circle - don't have to have to have the same opinion. And we can move on from that. Know what else is cool? We might actually learn from each other, if we can get past the hang-ups, break down the wall, and really try!

My 'assertive' daughter.

Once, as a young lady (maybe a stretch, but I was young!), a friend’s parent described me with those words exactly, a “young lady” and she added “strong personality.” At the tender age of twenty-five, I was offended. I felt like it was a nice way of saying the word uttered about strong women who dare show off their tough outer edges and ability to pursue their own dreams and make their own decisions – those who dare say what they think - you know the one – ‘the B word!’  And maybe it was exactly what she was saying, but I’ve grown into that now, and take pride in the fact that even then, I knew what I wanted and didn’t hide my personality to be more meek and mild simply because I shared an opinion every now and then. As I’ve aged, I’ve taken that ‘strong personality’ and used it for good, not evil – in this case, spreading the word about food allergies and sharing information the best I can. We call this particular trait “assertive” in this house, as we raise Maddy and see some of the same characteristics in her - independent, confident, and bold.  I’ll be proud to see her as a young woman, too.

Peanut Oral Immunotherapy is slightly controversial. There are pages upon pages arguing that this therapy is safe and effective (www.oitcenter.com) and a few articles that claim it is not quite ready for private practice.  As many of you have read in my blog, you know that for us, the decision did not come lightly, we did not jump into it – there was a progression for us that came with growth and finally a decision made together as a family. We educated ourselves, learned from others, and we found a board-certified allergist that we trust whole-heartedly, and we are certainly glad we did. We feel Maddy is safer and certainly see every day the benefits of our decision - her immune system has strengthened  as well as her overall quality of life – she is simply healthier and happier. In her own words, “I am so glad they have OIT. Whoever invented it is awesome!”

"OIT is awesome!"

I remember being on the flip-side, when we weren’t ready to try OIT, skeptical even. I took the educational process into my own hands, never allowing one article, doctor, Facebook group, or “expert” make a decision for me. As adults, we easily become set in our ways - tunnel vision sets in, even as we impart upon our children to do the opposite – try new things, make new friends, show respect, live by the Golden Rule. I'm unsure if this is always clear in our own experiences with each other, even in disagreement. The reality is kindness and respect go a long way. Consider the last time anybody was rude or spoke down to you - online, in person, or otherwise. Was that person one you wanted to listen to, take advice from or could learn from? I may go to bed angry, but your nasty comment will forever sit out there in cyberspace or in someone's thoughts, for the entire world to see. I’ll wake up refreshed and 'over' the entire thing - a good night’s rest helps me with that (just ask my husband). So, in your next exchange, challenge yourself to take a moment before hitting send – really listen to that other person, learn from them, and above all else, remember it is okay to respectfully agree to disagree.  Emphasis on the respect.

As I traverse the pages of Facebook, read articles shared, or comments made, things might “burn my butt” every now and again, but as the model citizen and parent that I am (eh, em… okay that I TRY to be), it has become important for me to recognize agreements and disagreements are perfectly acceptable, even encouraged, within this network of people - this world - and it can be done with dignity and respect. A lively discussion is good for the soul and promotes learning - just like good ol' Joseph Joubert, French essayist claimed “The aim of an argument or discussion should not be victory, but progress (1842).” I think he was spot on – if we could just remember that on Facebook!

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!

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!

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!