Friendly nuts

Woo...it's been a while, folks. My apologies. With Perry starting school, my brain has been a little frazzled.

Everything with Perry seems great. He's flourishing in school, sitting at the nut free table and he's got his "Allergy Alert" tag and medical alert bracelet with him everyday. He sits with 2 other boys at the nut free table and oh, how happy I am that he is not alone. But yesterday, something happened at school that made my food allergy mom heart break and I wanted to share it with you today.

I sent Perry to school with an Enjoy Life Ricemilk Chocolate Bar. I thought it would be a nice, safe treat in his lunchbox. He came home from school and I asked him all of the usual questions (how was your day? What did you learn? Etc.). As a food allergy mom, you always ask about lunch.

"Perry, how was lunch today?"
"The boys that sit with me say I'm not their friend anymore?"
"Why? What happened?"
"They thought the chocolate bar I was eating had peanuts in it and they said they don't want to be my friend."
"Did you show them, tell them it says "no nuts?"
"I did. The lady from the cafeteria had to come over to read it because the boys were telling everyone that I had nuts."

Okay, I get it. We teach our children to be safe above all else. To be aware and conscious of what people are eating around them. We have them wipe down tables and seats, we have them wash their hands, but when did we tell them there was something wrong with people who eat nuts? When did we give them the impression that people who eat nuts might not be friend worthy or nice? 

We have Perry at the no nut table for safety, for security - to be with other kids just like him. A little nut free companionship with other kids who know what it's like to be isolated because of their allergies. I did not think he would be further excluded because of something I put in his lunch - that was nut free but just so happened to look somewhat like something that is not. 

Now, these kids are in kindergarten so I'm sure that today was fine and all was forgotten, but I will not forget what happened to my little Perry, the peanut at school yesterday. It just furthers my resolve to make a big family sacrifice to drive 4 hours to a doctor who will provide OIT so Perry can be a little more like everyone else.

A mother's rant

As you've been following this blog closely (I'm sure ;-), you are well aware that Perry will enter kindergarten this September. We've been to a few events at the school and I've met my nemesis. A woman sure to make Perry and my life, as far as his allergies are concerned, a nightmare. All of my posts so far have been more upbeat, even in the face of defeat by food challenge, but tonight I just need to vent. Mostly, to make myself feel better but to also build up the courage to speak my mind to this woman should the time come.

The husband and I attended a Kindergarten Parent's Orientation at the school a week ago and I was very anxious and excited. I made sure I had my little notebook and my pen and I was ready to ask some questions and hear about how Perry's day in kindergarten would go. To my surprise, food allergies weren't discussed when talking about the cafeteria and birthday parties. So I asked about their policy concerning food allergies. They told me there was a separate, nut free table and no-nuts for birthday parties. Not great for my worst-case scenario mom mind, but I understood and knew I would have to work with it. 

This particular mom said, "But they can have peanut butter, right? They can bring it?"

It doesn't sound so harsh on paper, but there was a tone that can't be captured here - like I was  infringing on some right of hers just by asking how the school handles food allergies. I told myself to "calm down" "you heard it wrong. She didn't mean it that way." But, when we left and my husband asked what was up with her, I knew I wasn't just imaging it. 

Today, Perry had a play date with all of the incoming kindergarteners. Fun! I was so nervous and was hoping Perry could meet some cool kids. I saw the mom there and was a little nervous about it - she seems to be a little more aggressive than me and I tend to get ridiculously chatty when I'm nervous. Anyway, I found a Snickers bar wrapper on the playground (my heart was heavy) and mentioned to the mom I was talking to that I needed to throw it away and I'd be right back. We started talking about food allergies. 

The mom (aka, my nemesis), said, "food allergies are like the easiest thing to deal with. 

I mean, you can control what your kid eats."

Whaaaaaa?!?! Did she seriously say that to me? I was taken aback and all I got out was, "Well sure, when they are with me I can." She had to attend to her daughter and walked away, but we never got to finish our conversation. I wanted to tell her how difficult it is to avoid cross contamination. I wanted to tell her to start checking every single food label of everything she buys for possible contamination. I wanted to tell her how a little bit of peanut butter could kill my son! I wanted to scream and cry and hug Perry and never let him go. I will have to wait and be strong. I will hope that our children do not end up in the same class. I will hope I never have to see her again, my nemesis. 

A note to those who don't live with food allergies...

I think all of us parents who do want you to know that we don't like this either. We're not trying to make your life difficult; we know kids are picky, peanut butter is good and cheap and it's easy to make on a weekday morning. We wish we didn't have to ask you to bring nut free desserts for your child's birthday. We're sorry. We just want to send our kids to school and know they will be safe. To know that they won't slip up and forget to ask if the food your child is offering is nut-free or to trust 

the word of a fellow 5 year old when they say "yes." Please try to understand the panic that we will deal with during the monthly birthday celebrations, Valentine's Day, Halloween, etc thinking that every time the phone rings it's the hospital. The pain we endure knowing that our kids can't sit where they want in the cafeteria. That they may be sitting alone. That they may be the target of a bully for something they have no control of...try to live in our shoes. We wish we lived in yours.

Peanuts are lame...

It was the day we were waiting for...peanut challenge day!!! Perry awoke with a smile and an "it's peanut challenge daaaaaaaaaaaaaaay" and I was optimistic as well, but that "what if's" we're ever present in my mind.

We knew this was a risky food challenge. Perry was positive for the ara h2 protein (the protein responsible for anaphylaxis - 0.5 out of 100), but because his overall numbers came down our allergist didn't think a challenge was out of the question. My husband and I talked it over and decided since Perry was entering kindergarten, we should know what we're looking at and how to prepare teachers and other staff that will be caring for him should he fail the food challenge.

My husband took Perry to this challenge because I think Perry could sense my fear and I didn't want him to be scared, so I'm a little fuzzy on the details. I packed him up for the terrifying possibilities and watched them drive off and went straight to the gym to work off the anxiety.

Perry took the first dose just fine! Hooray!  The allergy office used the "smidge" "dash" measuring spoons to measure out the peanut butter, so I am only estimating on the amount of peanut butter given to Perry. Husband said he was totally fine after the first dose, about 1/32 of a teaspoon we're guessing. Perry told me he did not like how it tasted which I hear is pretty common for kids who pass OIT or outgrow their peanut allergies. How funny! Even the taste buds think peanut butter is lame!

After the 2nd dose, which we estimate at 1/16 of a teaspoon, Perry started complaining of stomach cramps. My husband is sure it's because Perry is hungry (they don't like the kids to eat before food challenges) and doesn't realize he is experiencing a sign of anaphylactic shock. He asks the nurse if Perry can have some plain crackers and they agree. As a precaution, they stop the test to keep an eye on Perry before they repeat the last dose instead of moving to the next dose. 45 minutes later, Perry complains that his throat hurts (I would be freaking at this point) and he vomits. Benadryl to the rescue and the test is over almost as quickly as it begun.

So, we're bummed - peanuts are still lame, but we do have the best information we can have at this point to move forward. Our allergist wants to retest Perry in 2 years and is still optimistic that he may outgrow these allergies because his overall numbers are still falling. We are going to continue to hope that our doctor, or a local doctor will start providing in-office OIT and we will be there knocking on that door.

"You're going to eat cashews, and you're going to love them!"

That's exactly what Perry told his body this morning as he gave himself a long pep talk before his cashew challenge. He never ceases to amaze me with his excitement and cheerfulness at any time no matter the circumstances. He totally gave the nurse an "I'm great!" after gagging and throwing up the last cashew of the day. She said he made her day. He does that...it's kind of his thing. We had receptionists, a handful of nurses and patients in the waiting room checking in on him and that wasn't the norm. I'm sure he felt like a little rock star today...and he was, but I'm a little ahead of myself though...let's start from the beginning...

Perry was the first to rise this morning, per usual, and came into our room with a "Guess what, mommyyyyyy? Today is cashewwwww challenge daaaaaaay!" We talked a little bit again about what it means, when we'd have to leave, the fact that he couldn't eat breakfast, how long he could play Star Wars for, etc. and he proceeded to give his body a little talking to. I lost most of the speech as he was walking around, but he wrapped up by saying, "Body, you're going to eat the cashews and you're going to love them!"

I was pretty anxious to get there and get started so we arrived at the doctor's office a bit early. I was a little worried because I knew we'd be there for a few hours, so Perry and I made some phone calls together before going inside. We arrived, signed in and everyone else in the office got to hear my little motivational speaker tell them how he was going to "love cashews" and "not be allergic anymore" and not just because he told each person but because he is really loud (he really is).

Ready to start the challenge

We were quickly called back and talked with our doctor a little bit about how the day would go and she divided the cashews into doses; each dose containing more cashews than the last. Perry's first dose was half of a cashew. Now, Perry is a very picky kid so I was worried as to how he was going to eat 20 cashews, but the excitement of the day and the hunger in his stomach was enough and he happily gobbled it down. Then we waited 15 min until the next dose. He did okay with the next few doses, but the doses became monotonous and he started his usual stall tactics when eating things he does not want to eat.
"But wait, I'm going to count to...ummm...10, no 5 and then I'll eat it and chew it up. And wait, I will
drink some water with it. How many do I have to eat again?"
So, I resorted to race chewing against Perry to eat cashews. It wasn't so bad. I was hungry too, after all and I do love cashews...but then, a hive came.

It was little, but a hive is a hive and I was scared it was all going to unravel on us. Doctor took a look and decided to wait 15 more minutes and repeat the last dose (4 cashews). The hive quickly cleared and we went in for the next 4 cashews. The stalling was ridiculous and he gagged a little, but he managed to choke them down. A few more hives appeared, but no redness in the mouth and he was feeling fine, so we proceeded to the last 8 cashews!

He wanted each cashew broken in half (ugh! Kill me), but he managed to get all but the last one down. I said, "1 left, Perry. You're doing so great! You can totally eat this one whole, I know it!" We'll, I was so wrong. It totally pushed him over the edge and he puked it all up! Noooooooooooooooo! Perry was so worried he'd have to eat more cashews. I felt so bad for him. Our doctor came in and checked his throat and tongue for swelling and hives and he was clear, so she said we just need to wait one more hour and then we were in the clear.

Time's up! Suck it, cashews!

I was starting to feel the stress. I was hungry and ready to go home. I can only imagine how my 5 year old who was forced to eat 1/4 cup of cashews felt. I was proud and sad and tired. I looked around the waiting room and was so burdened by what I saw - kids being diagnosed with huge, itchy hives on their forearms, 18 month olds doing food challenges, a boy whose face was swollen by some reaction. There was a family there who broke out some snacks and vending machine drinks (and were politely and urgently told to take it outside)...I knew they were new to the world of food allergies. I was sad for them...and I wanted their snacks...

60 minutes later, hive free and reaction free, Perry totally showed those cashews who's boss and I couldn't be prouder of how well he handled himself today. He is officially cashew nut allergy free! We will add cashews to his bi-weekly nut mix and he should never have to worry about this allergy again! I teared up, held my baby tight and ran (literally) to lunch!

Peanuts, you're going down next! April 18th!

The Siblings

Siblings of children with food allergies are thoughtful and hilarious. Fact. 

I think Eamon is a little more protective of Perry than I am and it's hilarious. The world of food allergies is pretty serious and unless your passing food challenges and graduating from OIT, there are not too many reasons to laugh. Here are a few chuckles and awww's courtesy of my number 2, Eamon.

Eamon is allergic to ticks (no, he's not), but he will tell you he is! He tells everyone. Just today at Target he tells the cashier, "My brother, Perr, is allergic to peanuts and cashews and peanut butter and Jiffy and Nutella and I'm allergic to ticks!" The cashier looks at me with an eyebrow raised. I reply, "Yep! Ticks! Can you believe it?!?" Because when you're older brother is getting attention, regardless of the nature of that attention, you need it too. Why ticks? I have no clue. Last summer, we told them not to go in the really long grass on the back of our property because it could have these "bad for baby bugs, called ticks" in it and I think it really got to him. It's even cuter because he will not go in the grass now...he's allergic.

Eamon loves Star Wars. He loves Batman. He loves anyone with a super power, light saber, "blaster" or cool car. One day the kids were playing and Perry was like, "Oh no! How are we going to defeat Darth Maul?" Eamon replied with conviction, "Darth Maul is allergic to paper. We can wear paper hats and he won't get us!" Because Food Allergies are super powers.

*I did make sure he knew never to give anyone anything they were allergic to because of the consequences of doing so*

Eamon loves peanuts. They are his favorite. He will scream, "Mommy! Peanuts! My favorite..." any time he sees the word Reese's at the store. I don't believe they are his favorite (and he's only had them a hand full of times), but because Perry can't have them, Eamon loves them. It's just what little brothers do.

On Perry's first day of kindergarten, Eamon wants to have a "Peanut Day!" A day where we eat any and all things peanut...you know...since Perry won't be around. He's very excited because peanuts are his favorite (see above). I'm going along with this one because his little world is going to be turned upside down when his big brother goes to school. 

Halloween is hard for kids with food allergies (and their parents), but it is also really difficult for siblings. On Halloween night, we always let Eamon have one of his candies that contains peanuts. Last year, we told him "If you eat something with peanuts, you have to immediately go the bathroom and we will wash your hands and your face. You won't be able to kiss Perry goodnight and cuddle with him tonight." Eamon thought for a minute and said, "I don't want peanuts. I don't want to hurt Perry." and he ran over and gave him a hug and a kiss. 

If you're anywhere in the grocery store when we're shopping, you'll probably hear, "Don't touch that, Perr! It has peanuts! Mom, Perry can't touch that, right?" 

Oh, the cutie. He really is cute. See?

Well, we've got Perry's cashew nut challenge on Thursday and his peanut challenge (did I tell you guys?) on the 18th! I've got my fingers crossed and my epi-pens packed. Hope you all had an allergic reaction-free Easter!
<3 the mom

Worries and such...

Will the worry ever stop? I know worrying is a natural part of parenting and it will never stop, yadda, yadda, yadda. I mean, I'm 30 and my mother still wants me to call her to tell her I'm home after a car ride longer than an hour. But, with a child with food allergies, I feel like that worry is like a constantly crushing weight I carry every day. Lately, especially with Perry entering kindergarten this fall, I feel like I might be crushed...or in need of a daily, deep tissue massage. 

The uKnow Test

Well, Perry's test results are in and he is positive for the protein that is responsible for severe reactions, including anaphylaxis. There is a huge BUT in the equation though...he is just barely positive (0.5 on the scale...I think out of 100). Of course, we will take our usual precautions and nothing will change for Perry, but I feel a little let down by these results. I was hoping he would be negative, but if it was going to be positive, I wanted...well, I guess I just wanted to know for sure what was going to happen. Instead, I feel like I have more questions. What will really happen if he has a peanut? Is it more likely that he not have anaphylaxis? I just want to know for sure, you know? Anyhoo, all I know now is that Perry needs OIT and I have to find it for him. The search continues...

The dreaded cafeteria

Registered Perry for kindergarten last week! Yay! Boo! In my heart of hearts, I was hoping that he'd be able to eat lunch in the classroom for his first year. That way, the teacher could be there to be sure that Perry wouldn't come in contact with an allergen. As I was leaving the school, I spied it: THE CAFETERIA (I swear, I walked like Charlie Brown out of that school). Now, while I'm sure there is a dedicated "Food Allergy Kids Only" table, it freaked me out. I can't stop thinking about it. Some delicious food offered, a cookie left on the table (I know, gross...he is only 5)...can Perry think with his mind instead of his tummy? Can I trust others to keep him safe? Where's the Pepto? Tums? 

Food Challenge...Accepted!

I was actually excited to hear that Perry was ready to challenge his cashew nut allergy. I was dreaming of ordering new food allergy bracelets and adding cashews to our nut day collection (I will explain later). After reading a few posts on facebook about what others experienced during their food challenges, I'm starting to freak out a bit. Well, a whole lot...a whole bunch. Will he need the epi? Will he throw up? Will his tummy hurt? Will we need to call 911? What if the blood test wasn't too accurate? What if he reacts later, after I get him home? I didn't even contemplate that he could fail this test. I didn't think about having to prep Perry for the what ifs. What do I tell him without causing him as much worry as I have? The appointment is April 4th and I'll let you know how it goes! 

Well, let's all keep "fighting the good fight" against these horrible food allergies. I signed us up for the FARE Walk for Food Allergy today! Felt good to do something positive. It's not until September here in Baltimore, but it definitely felt great to do something positive for Perry today! I hope you'll sign up, too! 

Team Peanut

I think any mom with a kid with food allergies wants their children to live as "normal" of a life as possible, but we also want our children to be safe. It's hard, therefore, not to draw daily attention to food allergies...especially on grocery day (why does it seem like all of the pictures on boxes of peanut filled granola bars and pecan studded cookies look so much better than the "no nut" ones??). I swear I say more than 5 times a day, "No, sweetie. You can't have that. It might have peanuts in it. It has peanuts in it. or I can't be sure it is safe." It's not normal and it breaks my heart every time I have to deny him some deliciousness. To a 5-year old kid, homemade just isn't the same as something from the store. It loses it's excitement, it's special status.

While visiting family, little brother kept drawing attention to the fact that Perry couldn't have peanuts and everyone else could. He cried, "I just want to be like everyone else! I want to be on the 'peanut team', not the 'no peanut team!'" Ugh! How can a mother keep from sobbing, falling to her knees and shouting "Why??????" at the sky? Thankfully, "mom mode" kicked in and kept me from losing it, but what can you really say? All I could come up with was something like, "Hey, I don't even like peanuts. They're gross! I want to be on the 'no peanut team' with you? Can you be the Capitan?"

Last year, at our annual trip to the allergist, I came across the FAAN Walk for Food Allergy flyer that I had seen the year before but didn't pick up. The walk was scheduled for Perry's 5th birthday and I thought it would be a perfect way for him to see how not alone he was. Boy, was I right!

I think I had tears dropping from my face the 2 hours we were at the walk site. When we first arrived, we checked in and got our t-shirts and ribbons. Mine was green (supporter of food allergies) and Perry's was blue (I have food allergies). As I pinned the ribbon to his shirt, I told him to "look for kids with a blue ribbon, they are just like you! Introduce yourself and ask them what they're allergic to...maybe they'll be allergic to peanuts, too!" He immediately started scanning and it didn't take long for him to discover he definitely was not alone.We made friends with a family and walked with them the entire time. Perry talked to maybe a hundred kids and they shared allergies :-)

If you have a child with food allergies, I strongly suggest you walk the now FARE Walk for Food Allergy (name change this year). It's filled with vendors offering free samples, bouncy houses, and possibilities for friendship. Invite your friends, your kids' friends and maybe your allergist (we saw ours there with her own children). Last year, just Perry and I went but this year, we'll walk as a family in support of our son and our brother.

Go, Team Peanut!