Valentine’s Day…from a food allergy mama’s perspective….

Happy Valentine’s Day to you all. I hope you all have had a great day making your allergy-friendly pancakes, waffles, cookies, cupcakes and cakes. I hope your sweet little kiddos got everything they wished for today…and felt love and acceptance during what might be a difficult day at school.

Yesterday, John came home to tell me something that happened to him at school that broke his heart and spirit…not something you want to hear from your child. He was made to feel excluded and different, and as a 10-year-old boy, that kinda sucks. As his mom who has worked tirelessly for several years to give him and kids like him the opportunity to feel normal, included and safe in their very own little safe havens, aka their classrooms (classrooms, NOT lunchrooms), I felt defeated and just tired of it all. So I immediately went home, typed up this email to his school peeps. I want to make clear….his teacher and principal have gone above and beyond to make healthy and inclusive changes at our school.They’ve been outstanding. I know this issue could not have been prevented by them, because they have been awesome at asking me what THEY can do to make kids like John feel more secure, safe and included in their classrooms. I couldn’t ask for more. What seemed obvious to me, however, is that we really are a culture that is obsessed with giving lots of food and sugar to kids not just during class parties, but for birthdays, or for doing something great at school etc. All I’ve ever asked for with regard to serving food in classrooms that are potentially life-threatening to a food allergic child is to take a moment to stop, think and imagine what that child’s life is like. Think of THAT child…and what that world of exclusion and terror FEELS like. That if they made a mistake, inadvertently ate something, they could DIE. In minutes. Just for a moment. I wish we all could remember that Valentine’s Day, like every other day of our lives, should be about LOVE, ACCEPTANCE, COMPASSION AND KINDNESS of others. None of us are perfect…but if we remember to love, we’ll remember to be cool with kids who have food allergies, disabilities, challenges, etc.

Here’s an excerpt of that email…sent with a broken heart. ;(

“I wanted to reach out to you both to let you know about an incident that happened today with John. He came home from school very upset, and hurt about a comment made regarding Valentine’s Day treats. A classmate was responding to a discussion that no candy or food would be allowed with valentines this year, and this classmate said “why don’t we put John and XX, the other food allergy kid, into the pod so we can have our candy?” or something to that effect?  I also heard from John that another classmate grumbled about no candy, and that even a couple more said their parents were annoyed because they already went out and bought a bunch of candy and now what were they supposed to do?

I truly appreciated the concern and care in asking me what to do about food in the classroom for the party in order to keep FA kids safe AND included. XX, you have gone above and beyond in helping raise awareness about food allergies at our school and keeping all our kids safe and included. XX, you’ve been wonderful and have always protected John and put his safety and well-being first.

As I’ve always advocated, I don’t believe in food bans, but I do believe in food free celebrations in order to keep children with LIFE THREATENING food allergies safe, and included. And, there are also a whole set of parents who actually wish there were LESS food, candy donuts cookies, etc. that was distributed to their children. Parents in general are trying to keep more tabs over what is being served to their kids at school. When you throw in the whole food allergy factor, and it could jeopardize a child’s life by having unsafe food in their own classroom, it’s even more important to establish clearer boundaries.

I am always teaching parents of FA children to never apologize for their child’s health condition. Because it is a condition, it is not a choice, or a dietary intolerance, etc. Food allergies can and do kill, and have killed children in their own classrooms. I just don’t understand why we can’t promote a fun, happy Valentine’s Day or other celebration WITHOUT food? Are games and projects not fun enough? Don’t 99 percent of these children get whatever food they want, whenever they want? Should kids like John feel like they need to be quarantined to the pod so their classmates can have food that John can’t even be near because it puts his life at risk? Shouldn’t we be teaching ways to look out for another, take care of each other, put others first?

Finally, I asked my first grader, who is brutally honest about what Valentine’s Day means to him…is it about candy and treats? Cards? His answer? Love, Valentine’s Day is all about LOVE. To that I’d like to add, any celebration at school should be about love and the inclusion of others. And if there are kids in the classroom who could die or feel totally left out because of food for a party, then we should be thoughtful of them by having celebrations that are fun and inclusive for EVERYONE.

John’s bummed, and hurt, but it’s par for course because he’s had to deal with these types of comments since preschool, kindergarten and first grade, until the time our school district enacted Food Free Celebrations. After a year of griping about the change, no one cared, loved the change and it became a healthier way to celebrate parties at school…something EVERYONE can appreciate.

Thank you again to you both for all your help and support. It is truly appreciated.”

Stay tuned….

Happy holidays my friends! The New Year is right around the corner, and with that will be the debut of my new and improved website for Food Allergy Mama! I’ve taken many of your suggestions over the years, such as a more streamlined process in which to search for all my FREE recipes, as well as my favorite food allergy stories, trials and tribulations. There will also be a section to pre-order my new book The Food Allergy Mama’s Easy and Fast Family Meals, as well links to my favorite resources and blogs.

Please bear with me as this change will be happening over the next few days, and my site might look a little whacked for a bit. But it is only temporary and know that my site will be active and ready to use at your disposable as soon as possible.

It’s been another amazing year with all of you, the best readers in the universe. I LOVE your comments, stories, tips, words of advice, and encouragement this past year. This blog would not exist without your faithful readership and support, and I’m truly grateful to each and every one of you. Even the naysayers….the negative Nancy’s…I’m grateful to you too. Because it’s often those harshest critics that inspire me to do better at getting the world around us more educated about food allergies and its effects on our children.

Thank YOU for a great 2012, and I’m very much looking forward to 2013 with LOTS of new and exciting things! Happy New Year to you and yours!!

xo

Food allergies at school…what to do?

Hello my friends! Is it really August already? First, I am going to apologize, again, for being negligent in posting. But since moving to California my time has been consumed with getting my children adjusted by filling their days with play dates, camps, and trips to the beach and pool. It’s been exhausting, I must admit, but it was my promise to them and myself that my job and focus was to be there for them all summer. I’ve had to do some final work on my next book, but other than that I’ve held true to my promise by just being 100 percent there for them.

I’m slowly getting around to returning emails and comments on this blog, and one recent comment on Food Allergy Mama in particular struck a chord with me…it’s a bit long so bear with me:

Whlie (sic) i am aware of allergies, the concept, that i am struggling with is the demand of a preschool child to no longer eat peanuts, tree nuts granola bars, PB and J whole grain breads (made on equipment that also manufactures nuts). We received a note in our childs lunch box this week stating that there is a child in his class that has a peanut (severe) allergy, the only item left in his snack box for him to eat was his juice box). Why does the 95% of the class get penalized for not being allowed to eat their ‘normal’ snack and be straddled to ensure the parents purchase the correct items that are allowable for this one student. Why would not the parent of the child supply a list of those items allowed for the remainder of the class to eat. Dictating what children eat at snack is not easy, and for a new to class stranger to have such demands is absurd. WE have purchased our childs snacks for a two week period and have limited funds to do so, to now purchase nut free items will cost more and we will not be compensated for this extra burden…..How is this right? one rules the majority, i did not sign up for a dictatorship.

our child has allergies to cats, and breathing is limited when they are around them, is it right that we demand that all others in class remove the cats from their home so as to not let the dander be brought to school on the clothing, but hey it is limiting this childs ability to learn by not being able to breath easily……………

this craziness has to stop,

I re-posted this comment only because it is the sentiment that WE ALL have faced in one form or another over the years from other parents about snack polices or food policies in school. Every time I read or hear about a non FA parent get upset about classroom policy and food allergies, I have to take a step back and try to see it from their perspective. What are they are truly angry about? Inconvenience? Lack of control? The right to serve what they want, when they want, to their children’s class? Perhaps. I think more times than not, however, non -FA parents just want to make sure their children are happy, well fed and well nourished at school. I totally get that. And I want the exact same thing, but more than anything I just want my son with a life-threatening food allergy to stay alive. I don’t want him to facet the physical, emotional and social trauma of going into anaphylactic shock in front of his classmates. And I also don’t want his classmates to ever have to witness him gasping for his breath and life. I don’t want ANY child with food allergies, whether he is a 3-year-old attending preschool for the first time, or my soon to be 5th grade son going to a new school, to  feel excluded, different, or anxious in his classroom.

I’ve said it before but it’s worth mentioning again; classrooms ARE NOT secondary lunchrooms. They are a child’s safe haven, a place to learn and socialize in an inclusive, positive environment. I’ve never advocated for food bans, especially in school lunchrooms. My son also has a severe dairy allergy, and I would never expect any school to ban milk, or cheese from children’s lunches. John knows it is HIS responsibility in the lunchroom to eat at a peanut free table and to wash his hands and not share food. However, the gray area lies within the classroom. Schools should consider more food free celebrations, and snacks in the classrooms should be free of potentially deadly allergens. To the reader who posted the comment above, and to any other mom or dad who is annoyed at possibly having to buy certain snacks for the classroom only, I would hope they could try for just a moment to consider the food allergic child, and that no granola bar or cupcake is worth losing a child over. Ever.

When I read the above blog comment, it saddened me that we can’t all just come together and put these children’s lives first, and think about what’s best for them, not what’s best and more convenient for parents. We need to think more logically and compassionately about the issue of food allergies in schools. I respect and value the opinions of non FA parents who wish to fight these types of changes in schools, but I hope that they can respect our food allergic children’s lives and well-being too. Change isn’t easy, but it is possible to do with everyone’s support from the top down, as long as the right information is put out, and more people are educated that food allergies are not a choice or a dietary fad.

In the meantime, prepare yourself in the new school year by scheduling a meeting with your child’s new teacher, principal and school nurse NOW to write a 504 Plan detailing accommodations in your child’s classroom (this is your legal right, don’t accept a “no, we don’t do that here” because it’s against the law to say such a thing). I’m in the same boat as many of you again, facing new food allergy policy issues in our new district. My previous school district in Illinois developed what’s been called the “Gold Standard” of food allergy policy. Below is a link to everything you and your school district administration will need to get the ball rolling; sample classroom letters, 504 Plans, downloads, etc. No need to re-invent the wheel, and it is great to have when your school tells you ” we don’t have the funding or manpower to develop such a policy”. Tell them it’s already been done for them, they just need to enforce it. And remind them that this policy was drafted with the careful consideration of not only food allergy parents and doctors, but non food allergy parents and lawmakers. Here it is:

http://www.isbe.net/nutrition/htmls/food_allergy_guidelines.htm

Good luck everyone, stay focused and positive and keep me posted on how your school year is going.

 

Rainbows, Hope and Maya Angelou

God puts rainbows in the clouds so that each of us – in the dreariest and most dreaded moments – can see a possibility of hope.  ~Maya Angelou

The possibility of hope, as well as symbols of rainbows is everywhere I turn these days. This past week alone, I received a fantastic Craft Box carrying the theme of Rainbows. I have seen adorable Rainbow Cupcakes, gorgeous photos my Facebook Friends have taken of Rainbows, Rainbow Jewelry, Rainbow flags, the word Rainbow written across pages. What on earth is the Universe screaming out to me right now? I have only a one- word answer to that question – HOPE.

The past six weeks of adjusting my family of seven to a completely new way of life has been challenging to say the least. Though I thought I prepared fully for such a big move from the Midwest, a place I’ve lived my entire life, to the West Coast for my new life, I realized how mistaken I was. One can never prepare fully for leaving behind everything and everyone you know, just to follow what is inside your heart. Moving towns, let alone across the country with five young children, I’ve learned, isn’t for the faint of heart. It is like having your first child; for as hard as you thought being a new parent was, it’s 1000 times harder. I was prepared for the logistics of the move. But I wasn’t prepared for all the other stuff, like completely starting from scratch when it came to my son’s food allergies in school.

Food allergy awareness and policy in schools is pretty much non-existent here, or at least where I live in SoCal. Coming from a school district where I worked hard to make positive and healthy changes for kids with food allergies, I was stunned by the lack of protection for kids here. I was stunned by the amount of food, treats and parties being offered to kids in the elementary and middle school. I was even more stunned that my son’s new allergist said he’s only helped about 4 food allergy families with drafting a Section 504 Plan to accommodate FA children in their schools. Treats are often distributed, and the FA child sits the celebration out, repeatedly. I know, because this has happened to John three times already, and he’s only been in this new school six weeks.

Even beyond the inclusion/exclusion issue, there is the whole safety issue of having a child around food that he/she could inadvertently eat or put to their mouth and have a potentially life-threatening reaction. I have used a great 504 Plan for several years now that specifically requests I am notified every time treats are brought into the classroom, so a. I can send in an alternate treat, and b. to make sure whatever IS brought in is Dairy and Nut Free. I was never notified in advance, which obviously is a huge problem for many reasons.

It’s very simple, classrooms should be safe havens for all children, and every child deserves to feel included and safe in their classrooms, regardless of age or disability. Food allergies are a disability NOT A CHOICE, and it’s time more schools take ownership of this fact and develop policies and procedures to reflect their commitment to keeping ALL children safe. There are too many gaping holes, gray areas, and room for error and potential for miscommunication going on here as well as schools across the country. As I said to my son’s new allergist, there’s a “perfect storm” brewing….something catastrophic can and will happen if these schools don’t pull in the reigns and develop guidelines for these kids. And they will be held liable, especially if that FA child has a 504 Plan.

I’ve never considered myself an extremist, only a mom who cares not only about my child’s health and well being at school, but ALL children at school. Nothing saddens me more than a child feeling alone, withdrawn, left out and anxious. No one deserves this, and kids with food allergies deserve better than that. They deserve the same respect and courtesy as any other kid. Again, this is a basic life lesson that everyone can learn from…love and take care of one another. Look out for one another. And respect each other. I don’t want food bans; I just want policy and written clarification about what’s acceptable and what’s not. I want to know that my 504 Plan will be honored and followed to the letter. It’s time for these schools to step up.

Going back to my original comment of hope. I have GREAT hope for what’s ahead and believe all these rainbows I’ve been seeing is a reminder to not get too discouraged and give up, and to remember that at the end of the day, everyone is doing the best they can with what they have and what they know. Maya Angelou famously said, “When you know better, you do better”. Educate, teach, inspire and help spread the word about how to keep our FA safe, included and HAPPY.

Finally, an amazing example of HOPE: My son’s previous school in IL throws a huge 4th Grade Farewell party at the end of the school year, a right of passage for these kids going into 5th grade and middle school. The party is complete with a DJ, Bouncy House, and of course, food. This year, the food committee went out of their way to bring in fun, kid friendly food that EVERYONE could enjoy. No one was left out, regardless of their dietary needs. How amazing is that? My friend sent me photos of kids eating hot dogs, chips and cotton candy, but vendors and products were checked and double checked. It was beautiful, and brought me to tears as I showed John the photos of all his old friends eating food that he would have been able to eat too. He was really happy for them, and thought it was really cool that these moms cared enough to think of kids like him. It blew me away, to be honest, because that kind of compassion and care for accommodating all the kids is nothing short of spectacular. And it’s a reminder that, as I’ve always said, “Anything is Possible”. A HUGE thank you to all those amazing parents in IL, and everywhere, for keeping that message of hope alive, and for taking such good care of our children. And never, ever give up hope.

I’m back….

First off, Happy Mother’s Day to ALL of you fantastic food allergy mama’s out there who work tirelessly to keep your kids safe and happy every day. I hope you are baking something sweet and fabulous with your incredible children today. Or maybe perhaps they’re baking just for YOU!

Second, I deeply apologize for completely dropping off the face of the earth, at least in the blogging world. I jumped on here recently and saw that my last post was in February. In February?? I could hardly believe it and thought something was actually wrong with my wordpress. But then I quickly realized I was a total loser and yes, literally dropped the ball all these months and haven’t posted a darn thing. BUT…I’ll give you the readers’ digest version of the past few months and you’ll see why.

Right after my last post, I sold my house in Wilmette, IL. During this time I was also juggling house showings (which means lots of house cleanings) and writing my next book, The Food Allergy Mama’s Fast and Easy Family Meals for Everyday. Writing this book was a labor of love as it includes lots of amazing recipes for breakfast, lunch, dinner and treats as well as menu ideas. However, writing roughly 140 recipes means creating them, testing them, retesting them and then cleaning it all up! Which, with 5 kids, virtually no help (except for my beloved Halina who lovingly cared for my kids 4 hours/twice a week while I wrote), and an insane kids’ sports/activities schedule, I was literally using every minute of every day to accomplish every necessary task. So then, after I received an offer for my house in February, my husband and I flew off to sunny CA in search for our new family home. No easy task, yet I did all the legwork and research months before, so I knew EXACTLY where I wanted to live. We spent a weekend in SoCal’s San Clemente and looked at TONS of houses. We found one, put an offer in, and after some multiple offer craziness we got it. Next up was finishing my book manuscript and recipe testing. After I finished that, it was time to cook like a madwoman for the book’s photography. I used the same photographer as my last book, Robert Knapp, who is such a creative genius. He has the most amazing sense of style. However, the process of shooting food photos is more work than meets the eye. And I do all my own cooking, food styling, etc. so the process can be very labor intensive. However, after a few days of that, we wrapped the shoot and I sent the photos and manuscript off to my editor. I took one day off, then got our whole family ready for a trip to Disneyworld….

Disneyworld is truly a magical place and I am so happy we went, even despite the craziness of those few weeks. My friend and AMAZING food allergy mama Lissa Critz at My Magic Journeys set up the entire trip for us, and took care of every single detail from where we stayed to where we ate. And yes we ate OUT!!! That alone made this trip the most amazing experience for us, and especially for John. It felt like a real vacation, one in which we could be carefree and feel as safe as possible. I love Disney and how they make EVERY child feel special and cared for, even those with food allergies. Many of you have feared going for obvious reasons, but please, take my word for it, it is worth every expense to go. It will be the trip of your child’s lifetime. Contact Lissa, she’s the BEST of the BEST and will ease your every fear. She’ll send you detailed printouts ahead of time as to where you and your FA child can eat, along with other special touches. I am forever grateful to her for making this trip one of our favorites.

After we returned from Disneyworld, I attended and spoke at FAAN’s Food Allergy Conference in Chicago and shared my favorite recipes and cooking tips. It was an honor and privilege to be there, and like every other year I’ve attended, met so many wonderful and dedicated food allergy parents. It never ceases to amaze me how much I learn from these conferences. I am so thankful for FAAN and everything they do for families like ours.

After the FAAN conference, I was off to speak at my BFF’s middle school in my hometown in Illinois. That was truly one of the most amazing experiences. Those kids were so special, full of love, wonder, and had a great capacity of understanding and concern for learning about kids with food allergies. Afterward they each wrote me these amazing thank you letters, and they all brought me to tears. Every single one of them.

Then a couple of days after that I was off to Orlando again for my own weekend at the Ritz. I was supposed to go on my own as a treat to myself for finishing my book and meeting an old friend, but my one of my BFF’s was actually in FL too, and joined me for the weekend. We had a blast, and it was great to see old friends and meet some new ones too. Love that Ritz!!

After that trip I came home to pack for 10 days, wrap up the kids’ last days at school and get the final details in order for a cross-country move. Oh my Lord, that was no easy feat. In fact, much of it is still a blur. But I do remember landing at John Wayne Airport in Orange County thinking, “I finally made it”. It was a very emotional moment for me, as moving out west has a been a dream of mine for a very long time. The fact that we actually did it still shocks me. I love Chicago, was born and raised in the midwest, and I’ll always be a midwestern girl, but my heart and soul have always longed to be here. I am an outdoorsy-type of girl, one likes to roam and explore, and my spirit could no longer handle the brutal extremes of Chicago weather. In fact, I loved to be outside so much that I was always the dumb ass who could be found running outside at 5am in 15 degree temps and lower wind chills, many times even during snow and sleet storms. I NEED to be outside, all the time. Now that my kids are getting acclimated to the beauty and warmth here, they are loving it just as much.

So now it is May 13th, I’ve been here nearly a month and still getting my sea legs. But I can tell you that I’ve never felt more at peace, or more at home. Every day I wake up, run along the Pacific Ocean and count my blessings. I am a VERY LUCKY girl. I am surrounded by the love of my family, the beauty of SoCal, meeting new friends whom I already adore, and looking ahead to bigger dreams. I think about the past year, and all my dreams that have come true, and have wondered, “now what?”. I’ve always been a daydreamer, someone who is constantly looking to learn more, know more, and see more. Now that I’m here with my family, and we’re getting settled, I’m already planning for new dreams and experiences. Hope…it’s what keeps us all alive and kicking.  Just like I have hope for a cure for food allergies, or hope that our kids won’t feel excluded at school, or hope that our kids stay safe and happy forever.

I sincerely apologize for being MIA these past several months, but now you know why. It’s going to be another fun and fantastic year as I prepare my next book’s release for you, and will be posting some new recipes (Mac and Cheese anyone??) I love you all and am grateful for your support all these years. Your comments, questions and advice make this journey a blast.

Happy Baking Everyone!!!

xo

Thank you….

It’s been a few weeks since my last post, but I promise that my limited blogging right now will reap bigger rewards down the road as I’m busy,busy, busy creating a TON of new and amazing dairy, egg and nut free recipes for YOU. My next book is one you’ve been asking for, fast and easy family meals (and of course a bunch of new treats as well). As I put together all my favorite recipes and tips, I’d love to know what YOU want. What kinds of recipes are you looking for? What kinds of tips do you need? What is important to YOU?

Your feedback always has been, and always will be very important to me. I started this journey of blogging and cookbook writing because of food allergy kids, parents, grandparents, aunts, uncles, friends, and teachers everywhere. My usefulness to you is my number one priority. I love doing what I do, and there are few things that give me more satisfaction than serving you and your families with new meals that everyone enjoys and shares together. I’m always inspired by your stories, trials and tribulations. And I love that everyone who visits my blog feels the same inspiration and love that I do. This is an incredible community we are a part of, and I’m so grateful to all of you for your endless support, feedback and love. I thank you from the bottom of my heart.

So thank you for your patience while I get through it all these next few weeks, and in the meantime, feel free to post your comments and wish list for new recipes. Thank you SO MUCH!!!! xoxoxo

 

 

Another child lost to food allergy….

Ammaria Johnson, an elementary school student in Chesterfield County, VA died Monday at school after suffering a fatal allergic reaction at school. She was only seven years old. Ammaria’s death shook the food allergy community to its core. How could this have happened? What precautions were taken at her school? What emergency directives were followed, or not followed? Read the latest story here. However, not enough information is available yet about what exactly happened. What we do know is that this little girl, who had a peanut allergy, ingested a peanut product and suffered a severe allergic reaction. There isn’t enough information about exactly what happened after that, but allegedly the school didn’t give medication to counter the attack, the school apparently called the mother first instead of 911, the school allegedly denied the mother’s request to keep Ammaria’s EpiPen at school in the event of an emergency, and after what seemed to be a series of missteps, the girl died shortly after at CJW Medical Center. I’ll say it again, there isn’t enough information available about this tragedy, but one thing we know for sure is, Ammaria’s death, like most food allergy deaths, was preventable.

The journalist in me won’t make assumptions until all the facts are out. But I will say that if the school did, in fact decline the mother’s request to keep an EpiPen at school for emergencies, they will be held responsible for negligence and not having an appropriate policy in place for children with severe food allergies. I read the fine print of their “policy” but if a clinical aid refuses the only medication that could save a food allergic child’s life, than all the rest of their policy is crap and BS. The right meds for these kids need to be in the right places at all times. No exceptions.

Which brings me to my son’s school and where they keep EpiPens, medications for children with food allergies. We are fortunate to have a school nurse. She has a big cabinet filled with resealable plastic bags of medications for children with food allergies. The nurse is located down the hallway from the cafeteria. In the event of an emergency in the lunchroom, it would seem there would be enough time to get a child down to the nurse, go through the packs of medications to find his/her specific bag of medication, administer one EpiPen for 10 seconds, maybe two if the first one doesn’t work, call 911 and pray the child responds to the corrective action.

However, I never felt comfortable with this process, because it is assuming everything will go exactly as planned, and that the child’s allergy will be recognized quickly enough to escort the child down to the nurse. I’ve always requested that a second EpiPen package be stored in cafeteria with the lunch monitors who handle the payment/check in. That person is trained on the EpiPen, and the monitors know what to look for in the event of a reaction. This emergency protocol is labeled in John’s 504 Plan. Today, as I was picking up John for his allergist appointment, I asked the office to double check to make sure John’s EpiPens were still stored in the lunchroom. The office confirmed that it was, and out of curiosity I asked if there were any other medicine kits stored in the lunchroom. The nice lady smiled, and responded…”No. Just John’s.”

The proposed School Access to Emergency Act “would enable schools to maintain a supply of epinephrine and enable staff to administer an Epipen to a student having an anaphylactic reaction.” Please read this article for more information about why it is important for you to contact your local congressman or woman for support. In my opinion, every LUNCHROOM should be equipped with EpiPens in the event of a food allergy emergency. There are a number of factors that could affect the child getting the right rescue medication at the right time. We encourage our children to always have their medicine kits on them 24/7, so why wouldn’t we have them available in the lunchrooms, where there is the most risk to these kids? Something to consider when drafting your child’s 504 Plan.

After seven hive reactions in two weeks, I took John to his allergist today to determine why. No new allergies were detected. John’s allergist said recurrent break out of hives is actually common in kids with food allergies when they are exposed to certain viral infections. As long as there isn’t any other respiratory or oral symptoms, it should be fine to treat John with daily antihistamines until the virus has worked itself out. It was interesting to note that John’s skin test and blood result for peanuts is still greater than 100 (KU/L), class 6 (highest class possible), combine that with John’s asthma and, according to John’s doctor an anaphylactic reaction could occur within 1-3 minutes. 1-3 minutes….is all it would take for my son to die if he didn’t have his EpiPens on him. Another variable is possibly how much peanut product would be ingested….the more ingested, the faster the reaction. As we all know, peanut traces could be in breads, cookies, snacks, etc. THIS is the reality parents of children with food allergies have to live with every day when we send our kids out the door. I used to think when John was in preschool that it would get easier when he got older. But I am finding that it is much, much harder. At the end of the day, John desperately wants to be a normal kid, who hangs out, plays sports and goes to 7- 11 with his friends to buy Gatorade. I get it, and I’m letting go as much as possible. But after hearing of another food allergy death…it just makes it all so hard to deal with.

Children are a great gift to us all. As parents we love them more than our own lives, and would gladly give ours to save theirs. We’re fiercely protective of them, and that will never go away. Keep fighting the fight, there’s much more work to be done in awareness, advocacy and prevention. Don’t take no for answer, ever, and believe that your child’s rights at school are just as important as any other child. Believe that homeschooling doesn’t need to be the answer, that your child can adjust happily and even thrive in any environment. And most importantly, believe in the power of YOUR voice, and empower your child to feel the same.

In the meantime, my prayers will always be with Ammaria’s family and loved ones, and hope that we can all help to prevent another child’s death from food. Here’s a great list from FAAN about the Anaphylaxis Do’s and Don’ts. Please read and share.

xo

 

Can you ever know for sure…

…that you’ve made the right decision in an emergency situation? How do we ever know whether our children’s food allergic reactions will develop into something that is life-threatening and tragic? It’s certainly a risk we face EVERY SINGLE TIME our kids or someone we love experiences an allergic reaction to something they ate, touched or breathed in. In the nine years I’ve been dealing with my son John’s food allergies, I am always humbled by how quickly life or death decisions must be made, and what factors must be considered when making them.

The past few weeks have been very unsettling in our house because John has had more reactions lately than I care to count. We’ve had more than one “sensitive” discussion about how his allergies are upsetting to him, and overall it’s just been a rocky road. Everything was cool and stable for so long, and now it feels as if the universe is shouting out to me to pay close attention, and that vigilance is a must in every single situation when it comes to our food allergic kids.

Yesterday morning John broke out in hives after breakfast. As I rushed to give him Benadryl, I drilled John about what he ate, and if he ate anything different. For the record we are pretty much allergy free in our house, so it confused me as to what would have caused the hives all over his face. John admitted he gave his brother a Gerber Banana Cookie, which is seemingly safe, but a closer look at the label (which oddly doesn’t follow the Food Allergy Labeling and Packaging Act by not listing CONTAINS: allergen, etc.) showed it contained buttermilk powder. The cookie was baked withe buttermilk powder, not coated in it. John simply grabbed three out of the box, and gave it to his brother because he had asked for a snack while I was upstairs. When John came upstairs and told me he was itchy, I panicked when I saw his face…two doses of Benadryl quickly resolved the hives, and I felt assured no further intervention was needed.

Then last night before my son when to bed, he had about four hives on his face and said his face was itchy. Again I gave him Benadryl because he had no other symptoms (such as wheezing, coughing, etc). There was nothing John ate that he didn’t have before. Fast forward to this morning, and once again, after breakfast John came to my room itching his arms and face and his face looked like this:

I immediately gave him the same two doses of Benadryl that worked on his reaction yesterday, and called his doctor’s emergency number, all the while watching John like a hawk. He stayed right next to me the whole time, as I held his epipen in one hand, phone in the other. I looked closely for every other sign possible and asked John a million questions such as Did his throat hurt? (No) Do your lips or tongue feel funny? (No) Does your chest hurt? (No) Do you feel dizzy? (No) Does your stomach hurt? (No) John’s hives were mainly on his face, parts of his back, his arms and one part on his leg…what many consider a full body hive reaction. Many people feel that these symptoms alone is enough to give the epipen but I hesitated to give the epi for one reason: my doctor on the phone said that they recommend giving the epi when the patient presents the vomiting/breathing/mouth symptoms, and that as long as he wasn’t in distress and the hives were lessening, that the Benadryl would counter the reaction. Of course, John’s symptoms could worsen at any minute, in which case I would have given the epi and called 911, no exceptions. But with a house full of young kids, no husband around and his highly respected allergists telling me the Benadryl was an “appropriate” course of action at that very moment, I decided, yes, the Benadryl was good enough for now, and as I saw his hives literally fade away, I was comforted.

However, in a lengthy discussion with the allergists’ office, I wanted more answers about what was going on with John, and can I expect to see another reaction soon, perhaps an even worse one? Apparently these types of reactions can occur intermittently for up to a week after the initial one, and there is truly no way to know if the reaction will present itself as hives or something like anaphylaxis. John’s course of action was to take a Zyrtec and Benadryl once a day until this passes out of his system, then I’ll need to bring John back in to determine if the reaction was caused by either touching the baked milk cookie, or possibly an emerging soy allergy. We’ll do a full testing on John again to rule out soy. If not, then we can assume the reaction was caused by touching that cookie. It’s another argument for the logic behind food free classrooms (or only allowing fruits and veggies as snack choices). Because if anyone believes that you can’t suffer major reactions by just touching a food you’re allergic to, simply take another look at the photo above.

Finally, I asked the doctor if I made the right choice, because I was still doubting that I did. I was assured, yes, given the set of circumstances, and John’s list of symptoms, that I made the best choice at the time. I then asked “But why? Why did this happen? Why now? How did it happen, and how do I know it won’t happen again and be THE big reaction that puts John’s life at risk?” I was told “You don’t know. None of us know. We don’t know if your son’s reaction was stemming from yesterday’s or if he has a new allergy, and if he DOES have a new allergy, why now? No one knows”.

No one knows. Ever. As a mother I always want to make the best decisions and am fiercely protective of my children, as are all of you. But what never ceases to amaze me in the world of food allergies…is how LITTLE we still know. How mysterious this disease is, how different each reaction is, and why some are highly allergic to one thing, and some outgrow others. I’m always asking why, but still feel like I don’t have any more answers than nine years ago when we first started on this journey. At which point are we going to know more? At which point can food allergies be eradicated? I know we are headed down the right road with new therapies, treatments, laws, etc. But on days like today, I’m painfully aware of how little we DO know. And how so much of this is still out of our control.

During this holiday season, I wish you all Happy Holidays and to BE SAFE. xoxo

Food allergies suck…

OK, not the most eloquent of titles but it’s the only thing that truly resonates with how I feel tonight. Most days are just fine, and I am content with the hand that has been dealt my FA son, knowing that we will persevere through the murky waters of food allergies by being diligent and raising awareness, along with maintaining a “can-do” attitude at school, parties, play dates and any other type of outing. But there are days where as a mom, I wish this would all go away and we could just find a cure. Days like today.

After school I offered my son John a brand of vegan pudding we’ve had in the past, and that I knew was safe for him to eat because I painstakingly read the label numerous times, except for today it seemed. This packaging look nearly identical but it was a slight variation made with soy milk. As many of us already know, some soy milk-type products often have milk or legume proteins hidden in the ingredient list. John noticed right away that it was slightly different packaging and asked if it was OK (because our FA kids are REALLY good at NOT trusting labels). I looked at the label, and it looked OK..still not putting two and two together that it was slightly different. I told John it was fine to eat, and since he trusts his mother to give him good information, he opened it up and took a bite. Reaction. Albeit it was minor (itchy lips and small hives), it was still an immediate reaction. Once we countered the reaction with medicine, and saw that John was OK, and the itching was only on the outside of his mouth and not inside, I went to the fridge to double-check the packaging. Sure enough, after looking at every little ingredient…there it was; Locust Bean Gum from the Legume Family. Thank God John didn’t start wolfing this stuff down, and took a careful bite to check first (again, FA kids are REALLY good at NOT trusting labels). My heart sank. I failed my son. He trusts me to make good decisions and to keep him safe at all times, and I didn’t. I’ve written many times in this blog that “mistakes can and do happen, even in the best of circumstances”.  This mistake happened on my watch, and if I’m vulnerable, so are schools, restaurants, etc. Wait, I take that back…they’re about a thousand times more vulnerable because they aren’t as lovingly and personally invested into our children’s health as we are. We’re moms, and will fight to protect our kids under any circumstance. Yet, we’re not perfect and slip ups happen even when we think we’ve got it all covered. Good to remember when we are trying to keep excess food out of our children’s classrooms….

Speaking of excess food, after this particular reaction my son left to go to basketball practice. Almost as soon as he walked in the front door upon returning, John broke into massive tears and sobbing. I gotta be honest, I haven’t seen him cry like this in a really long time. In fact it is rare John cries at all because he hates any excess attention on him. He’s always the kid who’s cool as a cucumber. So I knew something really bad must have happened at practice to shake him up. It was hard for him to talk about, but once he calmed down a bit he told me was embarrassed about his allergies, and for feeling different. I calmly pressed for more information, all the while fighting back my own tears, and he said that his coach offered his teammates a pizza party if they scored a certain number of points at their next game. John’s friend, who is very sweet and I know always looking out for him, told the coach John was allergic to pizza and couldn’t have it. John was mortified because he hates feeling different as well as if he were somehow preventing his friends from having pizza. He remained silent about his allergy and didn’t want to talk about it. The coach was concerned, and apparently unaware of John’s life-threatening allergies (this is a travel league, and usually all that information is relayed via paperwork and registration, so I guess I assumed wrongly his coach had this information). He said to the boys, “no problem, how about Jimmy John’s or Subway?” By this time, John said he just wanted everyone to stop looking at him, and to just have a pizza party. In that moment, I imagined John wanted to crawl up and go hide somewhere, because once again, all that attention on him made him feel different, and not like a normal 4th grade boy who just likes to hang out with friends and play sports. He goes great lengths to avoid looking different, and now that we’re approaching middle school, it’s only getting worse.

John’s emotions when he came home were raw, unlike anything I’ve ever seen come out of him. He’s growing up, and very aware of his limitations. He hates it, and at times, wishes his allergies would just go away. He wishes he would outgrow them, and he wishes for a cure. He doesn’t want his friends to miss out on things like a pizza party, because of him. He wants to blend in, and not have kids, coaches and teachers make accommodations for him. Once the tears stopped tonight, this is what John told me, straight from his heart.

My heart is heavy for John, and all the FA kids like him. Especially on nights like tonight. Everyone means well, everyone is trying their best, but sometimes, the reality is still that this is a very real disease that could cause death within MINUTES if not treated, or if an epi pen was left at home because “someone” didn’t want to feel different. That “someone” is John….and I fear he will continue to want to ignore his medical condition at the risk of trying to blend in. All I could do tonight was give my son my love, my hugs and my full attention to what his heart was saying. Before kissing him goodnight though, I reminded him that although I know how hard it must be to have a body that different from some other kids, he’s not alone. There are millions of kids out there just like him, feeling just like him, and want to be included in LIFE….just like him. He’s special, and that’s OK too. At the end of the day, we’re all different with unique challenges. Some kids have diabetes, some kids have learning disabilities, some kids have medical disabilities. But we’re all the same in that we just want to be loved, heard and accepted. And I guess that’s all that John and our other children, hell, even us, really need.

“The mere sense of living is joy enough”….

This is one of my favorite quotes from American poet Emily Dickinson. In the past month as I’ve shuffled endless carpools, write, cook, bake, clean, try to sell my house, etc. etc. etc. I’ve had to pause each and every day to remember the joy in all the little stuff I do every day. Yes, I have my share of crappy days like everyone else, but lately I’ve come to realize that it isn’t necessarily the issue at hand that matters, but rather how I choose to react to it, that matters.

For example, in previous years, Halloween really used to freak me out, and not just in the literal sense (I don’t like mock graveyard scenes, zombies and scary movies…I’m a wuss). I used to hate having to think so far ahead about how I was going to handle the school Halloween party, or how I was going to handle trick or treating. This year, the tone was totally different. For starters, my son’s class party was food free, which was fantastic and eliminated all that planning and stress. The kids DID NOT care, believe me. I was in the classroom helping out and they were having so much fun playing games, etc. that they could have cared less if someone brought in a neon orange-tinted cupcake. Second, my 4th grade FA son wanted to go trick or treating without me, and out with his friends. Now, our community is very much like Mayberry, and everyone looks out for everyone’s kids. My son was going with trusted friends, and he took his medicine kit and my cell phone with him. He knew the rule was that he was to eat ZERO, ZILCH, NADA candy while en route, and had to wait until he got home to eat any of the three types of FA safe candy he got. John’s friends knew the drill, and were so aware and thoughtful of John and how to keep him safe. They truly cared about his well-being and were serious about following my rules. I told John, that I am letting go a little to allow him to make his own choices, and that I trusted him to follow the same rules we’ve always had. Then with the blink of an eye, my freckle-faced boy bolted out the door, with pillowcase in hand. He was LIVING…just like any other kid. And though I worried until the second he ran back in through the door, I was grateful he had his moment to let go and have fun. He never takes anything for granted, and I could tell he enjoyed spreading his wings a bit.

As John enters middle school next year, he is inching toward the age group of FA kids who are most likely to die from a food allergic reaction. Last year FAAN released a survey of food allergy patients ages 13-21 years old. Half the respondents admitted to knowingly eating food that they were allergic to, or that they knew was unsafe for them. Only 61 percent of the patients carried their life-saving medication epinephrine. And the majority of the respondents said although they wished their peers knew more about food allergies, they didn’t want to be the ones to educate them. FAAN conducted an earlier study that showed 69 percent of fatal food allergic reactions, were between the ages of 12-21. It is an extremely vulnerable group, and as my FA son grows up, I am realizing how important it is to be forthcoming with all this information to my son, so he can advocate for himself, especially as he increasingly finds himself in social and sports situations where I’m not always around.

I’ll try not to focus so much on the statistics. Instead, perhaps I’ll follow Emily D.’s lead and just live for today, because at the end of the day, time is sacred and shouldn’t be wasted for one minute worrying about things and situations we can’t control. Prepare, plan, but then let go and live freely, right?

One more thing, I just learned today that my Food Allergy Mama blog was nominated as a Circle of Moms top 25 Food Allergy Blog, a true honor and am so excited to be in the running. Please go here to vote, and you can vote every day until November 16th. I am so grateful for all you guys, you really are the most amazing and supportive group of readers I could ever hope for. I’ve learned so much from all of YOU over the years, and hope that I can continue to inspire and create recipes for your families for years to come. Seriously love you all and your comments…;)

Happy Baking…and will be back soon for a Thanksgiving recipe!!!

xo,

Kelly