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!

High Hopes

Anxiously awaiting the taste of PB.

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

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

Lil' Miss Bossy Pants - Fall 2009

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

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

Spring 2009

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

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

That was hard to deal with sometimes, though. 

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

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

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

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

The first taste!

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

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

So, we soldiered on.  She soldiered on. 

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

That's My Girl

Excited to try something new!

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

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

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

5 Peanut M&M's = 3 regular peanuts

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

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

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

These kids all amaze me!

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

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

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

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

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

Love this girl!

“What?” I said. 

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

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

What's It To Ya?

Greeting her upon arrival.

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

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

Waiting to eat that 1st peanut.

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

The first face. Yuck!

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

Getting the taste out!

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

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

Always such a good attitude, though!

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

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

Such a smart little girl!

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

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

Friend, Dear Friend

Maddy & Livvie

One of my favorite quotes about friendship is “A good friend is cheaper than therapy” (author unknown).  In my life, over a beer, during a car ride, in the classroom, or on the phone, many a conversation have helped me hash out my problems or theirs. My friends are as important as  family and we’ve raised Maddy to believe friendships are not only important, but essential components to a healthy life – expecting her friends to treat her well and to treat her friends the same – by giving and getting love, support, and a sense of belonging. 

The girls playing at the desk.

In our lives together, Jason and I have not only been lucky, but blessed, to have an amazing group of close friends. This remarkable group of people has been a part of our lives since college, some before. At Michigan State we studied together, partied together, and at one time or another, lived together. We’ve stood for each other in weddings and have held each others' newborn babies.  Every time we see each other we hug each other like it has been a decade since we’ve spoken, but pick up conversation as if it was just yesterday. We try to get together when we can but also reserve a few very special days out of the year just for each other, New Year’s Eve, the Fourth of July, and an especially fun day in September.  Even as we age and can hardly handle our adult beverages anymore, we party like 30-something rock stars – stay up late around the fire, argue over politics, religion, or any other controversial topic that may come our way and maintain every bit of love & respect for each other through it all. Even as the group has grown to include new spouses and the occasional neighbor or two, this is our core. Our history. 

Amazing Doc - Doctor Mayer.

Amazing staff - Nurse Amy & Nurse Lety.

Madeline has watched us with this group of friends and others. She has been witness to how we treat our friends, as well as how we expect to be treated in a friendship. Jason and I would do anything for them because our true friends, this group I speak of and others I haven’t even mentioned have been with us through thick and thin, especially in recent years. When Madeline was first born, they were there at the hospital & then the house to hold her little hands. When chemo threatened Jason’s hair, these guys shaved their own heads. When trips back & forth to the oncologist were simply too much - we were given the amazing gift of a cleaning lady to help out with the house - now that's friendship! We are surrounded with beautiful people who hold us in their hearts and them in ours. Friends keep us going at times.

One big happy family!

The beauty is that in watching Madeline experience peanut desensitization, she is learning more about friendships, too. Madeline’s best friend, Conley, will always be her BFF, “till we die” they say and we are sure to keep a regular play date going. But the “peanuts gang” has a different connection that has provided Maddy a chance to show empathy, caring, and support that she has not needed with her BFF so far, but may someday. When Ella graduated she had a chance to see where she was headed with the program. When Izzy had to stop OIT because it was just not working for her, we said prayers, talked about Izzy's feelings, her family and what it might mean for her future. We still do. And when Livvie graduated it was bittersweet. It was hard for Maddy to say good-bye but so awesome for her to see her really great friend moving on to such great things. She wanted nothing more than to be there to see Livvie eat that peanut butter and make sure all was well with that final challenge. Madeline has treated each situation with the dignity and grace of a mini adult; I am impressed and proud of her!

The girls sitting still long enough for a pic!

Maddy has felt nothing but love and support from the staff and patients at Dr. Mayer’s office – exactly what I hope for her in life. Everyone cheers her on - like this time as she went from 250 mg of peanut flour to 500 mg - the last stop before a peanut -  and she does the same for them! The day Livvie graduated was a happy one for everyone – another success story, no problems for Maddy, just another day of playing with friends for Livvie, and just another (exhausting) day at the office for the staff - and another reason to feel hope for those living with food allergies! As the parents bonded over next steps, Maddy, Livvie and the rest of the gang just had fun – because sometimes that’s what it’s all about, too!