Happy Birthday, Maddy!

When Maddy turned seven, our family celebrated by beginning a new chapter that was be life changing, helped to raise awareness for those suffering from food allergy, and helped educate people about OIT. Now, as Maddy turns 8, and will begin the 3rd grade, so many possibilities are open to her as a child that doesn't have food allergies standing in her way!

Find Maddy's Seven Year Itch on Facebook!

Follow me on Twitter!

Check out my other blog, The Best Medicine, about my husband's battle against cancer.

Sunday, September 1, 2013

Maddy Uninterrupted

Camp Lover!
Years ago, I could not wait for the days I could sign Madeline up for overnight camp. When I was a teenager, I had worked at a brilliant YMCA camp and loved being a cabin counselor – singing camp songs, acting out ridiculous skits, playing all-camp games, bonding with campers and other counselors, and best of all – challenging myself and my campers to beat personal goals. Camp was a place that helped me find myself as a young person and I hoped it would be there for Maddy as she grew up, too.

My hopes were dashed last summer, though, when I was looking at camp for the first time. Not only was I too freaked out to send her because of her peanut allergy, but the camps in our area were simply not like the camp I worked at in the past. They could not compare to my camp and my camp was just not going to happen between her food allergy, her age at the time, and our location.

Enter OIT.

Loved canoeing!
There is no secret about why we choose OIT. It is evident in my blogs and on Maddy’s Seven Year Itch Facebook page – OIT was the best choice for this family in order for Madeline to lead a happier, healthier, and safer life. As you all may know, peanut desensitization allowed Maddy to keep living her life without interruption. I believe that if we had continued on last summer without OIT, Maddy’s confidence may have become shaken. A young child’s social and family life is key in how they grow up – their influences and their beliefs about their abilities shape the future of their self-confidence. I see it every day in my profession as kids learn and grow, their self-confidence changes the way they perform in and out of the classroom and that transfers to the big world.  The last thing we wanted to have happen was for Maddy to live life scared - all from a little-bitty peanut!

So this year, with OIT under our belt, a whole year no less, I signed her up for camp. My camp. And I could not have been more excited!

I was especially excited for Madeline to go to camp because as her days to go drew near, I received a call from an old friend. A special alumni week was being planned and I was invited to go with her. They had me at ‘Hello!’

Ready to head up. 
In the 18 years since I had worked there, the camp had changed a little bit, but for the most part, much has stayed the same. Many of the same wonderful camp traditions – songs, skits, & ceremonies – have remained. Not only does Camp Algonquin push kids to try new things, it challenges them to work as a team, take some personal risks, and develop special relationships with each other and embrace their independence  – all within five days’ time and while having a ton of regular ol’ camp fun  – swimming, tenting, zip-lining, hiking, canoeing and more. The place is amazing!

I chose to stay just a few nights with a few other alum that I hadn't seen in way too long – and let Madeline have the nights in between all to herself. I wanted her to have the true camp experience without me – to bond, to take risks, to challenge herself without me in the way. And boy did she ever.  

It was exciting to get reports about her and unbelievable to see her push herself in the way only camp can make happen. While I was not there, a friend sent me texts, pics, and video, but the smile on Maddy’s face told me much more.  She had an opportunity to do two very cool obstacles – a high adventure ropes course and a climbing wall that were her absolute favorites. Each are at least 30 feet up, require children to be harnessed, and have special, specific safety rules for climbing. Each necessitate kids to utilize high energy, high patience, and to take some safe risks that may seem very scary, especially to eight-year-olds. Madeline challenged herself on each of these obstacles – she was excited to try them and when she came to a difficult part, the steps she took to continue on, were impressive. With each, she never quit – she made each of her goals – to the top of the climbing wall and through each of her obstacles on the ropes course that she had wanted.

On the 'Stairway to Heaven' obstacle.
I was proud of her, of course. I was excited about what she was able to experience there as well, but the coolest thing for me was when a friend of mine told me her account of watching Maddy.

“Maddy did awesome! She made it all the way to the top of the wall. It was so cool to watch her. Like a metaphor for her life, ya know – at her age all these obstacles she’s had and here she is moving right to the top, ya know?” Lisa said this to me and I was nearly moved to tears, not because I missed watching her do it but because really I had been there with her every step of the way through those obstacles, and this was a person that I had just reconnected with, had only seen our lives through FB and my retelling it recently, not lived it with us. And our lives had been tough lately. 

Lisa was absolute right. Later in the week, I had an opportunity to watch Maddy on the wall and the ropes when her cabin headed up on each again. I watched her maneuver and manipulate when one path didn’t work on the climbing wall and when she got stuck on a new and very difficult obstacle on the ropes course, my girl did not give up, even though it almost brought her to tears.

Climber ready.
I hid tears myself, as I thought of her young life and, like Lisa said, the unique obstacles she’s had – her food allergy, the peanut desensitization program, and her father’s cancer. We’re raising a fighter. We’re raising a child that doesn't give up, who literally looks for a new path when one doesn't work, a child that when faced with the choice of quitting or moving on is disappointed with the idea of failing - she won't quit, won't fail. If Maddy knows it is possible, she will make it happen. Madeline would not have given up on those obstacles, just like she would not let food allergies rule her life, or she won’t give on OIT even if she despises the taste of peanuts!

My daughter is amazing. She is a little fighter, yet compassionate and strong . She is a survivor. Camp is a great place for her to realize the potential she has inside herself and I am so glad it will be there for her like it always has been for me. She’s been singing camp songs ever since she came home, so get ready Camp Algonquin, she’ll be back!

Wednesday, July 31, 2013


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 7th 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. 

Thursday, July 4, 2013

Gotta Have Faith

2009 Gooley Family
It is difficult to ignore when a child, teenager or most recently, an adult, is lost to a food allergy related accident and it hits the news. Events like these should be prevented one way or another through education, better training, or quicker response time - whatever the case may be. These incidents become lodged in your mind when your child or you yourself are anaphylactic to food allergies. Even now, since Maddy has become desensitized, even beyond ‘bite-proof,’ to peanuts when big news like an allergy related death breaks; I can’t help but think, “That could have been my child!” How fortunate we are to have found OIT and what a miracle it is that OIT has worked so well!

Every day since Maddy graduated from peanut OIT a little something special happens for us that makes us realize just how amazing this scientific miracle is and every day we count this as an extra special blessing in our life. This goes for our life with cancer. We count our blessing and we live on, everyday our faith growing greater – it has to when faced with these two beautiful miracles!

Not surprisingly, for the last number of years, our role in our church community has grown tremendously. Faith in our life has grown tremendously and we've grown with it. Our church came to us, almost literally, at a time when we needed it most, during Jason’s first bout with cancer and so, in return, we went to them. And they have been an incredible force in our lives.

Maddy & Hayden raise funds for pastor's sabbatical fund.
As a young adult, I didn't know what I believed or where I belonged. I had been raised in a different church than the one I attend now and my views, not so much strayed, but were challenged, as I entered adulthood. When we had Maddy we did not attend church unless we were attending a family function - I always felt that as long as I raised my own child well - to tell right from wrong, good from evil, modeled good decisions and goodness to other people - I would lead her down the right path. And I still don’t disagree with that; and certainly I would never disrespect anyone’s faith choice – as long as their moral & civil obligations hold up – but the community that we find at church is like no other. I never regret going, I love those we know there, and we've been very active members - participants in boards, helpful in Sunday school, we love the fellowship activities and do what we can when we can! The messages our pastor sends out to us always seems to hit home and we take those messages and to heart. 

When we first began attending church more regularly, when our family was first in need, Maddy was unable to eat at many of the coffee hours during fellowship following service due to her peanut allergy. Maddy was certainly the star of the Gooley show, though and was present regularly – her Grandma Linda and Nanny Lou, Jason’s Godmother, took her weekly to service in order to give me a break during chemo. Slowly, as we became more visible, more frequent attendees at church, Maddy’s presence and her peanut allergy became very well known. There was hardly a Sunday that Madeline couldn't eat at least something after service, even if it was only sliced fruit and cheese & crackers – every item checked and rechecked. There were some people that even sought us out to let us know that special preparations were made specifically for us, for her – the kitchen was washed, the utensils prepared, and all the ingredients were kindly checked, and often brought with them. What care they took.

Trunk or Treat - 2012 Gooley Family theme - Can you guess? 
As Jason is in his third round of chemo, and Maddy has completed OIT, our church continues to care for us. Each week, either one or two meals have been prepped for us. This time, though there is no concern for peanuts, no worry of cross-contamination and no bother that she will get ill from a peanut issue. It has been extremely helpful to have the help as Jason works extra hours the time he is not on chemo – he is an amazing man! When he is on chemo, he is ill for about six days straight. The man does not catch a break! 

We don’t just get coffee hour and meals from our fellow church members, though. As members of such a beautiful community, we have always belonged, always felt welcome - whether we can get there regularly or not. There are thoughts and prayers going in and out for us and people constantly asking about Jason and Maddy and lifting us up in their devotions. When I am there I am hardly left alone because everyone wants updates on my family - it is wonderful that everyone cares. We are a part of something special there.
2011 - Annual FCUCC baseball trip! 

 We have been battling this horrific disease, cancer, for four years now, and Maddy had been avoiding peanuts due to the threat of anaphylaxis for seven years before undergoing peanut desensitization treatment. In that time we'd spoken with so many folks in and out of church – face to face, on-line, and over the phone that use faith as a way to connect. It’s always both comforting and interesting. There are so many different perspectives on how faith carries a person through difficult times. I think I have the beginnings of a thesis! Every view, every word is delivered with good intentions – to make us each feel better - and it does, EVERY TIME. Every word of hope, prayer, and courage sent our way strengthens us and empowers us to keep living life positively. I thank you all for those words.

When life throws us lemons – we all hope God will throw us a miracle, but it helps to have wonderful people waiting with you! 

Wednesday, June 12, 2013

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 3rd 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!

Wednesday, April 24, 2013

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!

Sunday, March 24, 2013

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!

Sunday, March 3, 2013

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