The big one….

Last Saturday, I went upstairs to start my grad school homework I neglected all day because of our five kids’ sports schedules. Just 20 minutes later my husband came into my office worried that John might be having a reaction. I expected to go downstairs and put a plan into action. But what I didn’t expect was to find my son at the bottom of the stairs, eyes red, teary and panicked. I’ve always read about “the impending sense of doom” in some cases of anaphylactic reactions. And here it was, the look of doom staring right at me. In that one brief moment, I KNEW.

I started hammering him with questions as I jumped on a chair to reach the medicine cabinet over the desk, looking for the Epipens:

Does your mouth hurt?

“Yes.”

Does your tongue feel funny?

Yes.

Does your throat feel like it hurts?

“Yes”.

Does your tummy hurt?

Yes.

Do you feel like you are going to throw up?

“Yes”.

“I’m scared mom”.

It’s OK John, keep talking to me.

At the same time, my husband relayed the story of what he ate – a Popsicle with dairy in it. He bought it earlier in the week for the other boys, and John grabbed one for dessert after checking the labels.  Contains Milk was not bolded in the list, but he failed to see the first ingredient in normal typeface – Nonfat Milk. John blurted out that he ate half of it before his mouth started hurting. He felt the reaction almost immediately, but didn’t want to tell his dad yet. So he got a paper towel and tried to wipe his tongue clean first. He said he felt worse by the second and was forced to tell my husband he was having a reaction.

I grabbed the Epipen and firmly injected it into his outer thigh. Michael, his four-year old brother was by his side looking up at him in stunned silence. David and Matthew, (9 and 8) sat on the couch nearby, but I was too distracted to know for sure what their reaction to John was. He said started feeling better almost immediately but I knew we had to get him to the hospital right away.

This is where I made a huge mistake. In a panic I was worried that if I called 911, they’d take him to the hospital nearby which is NOT where I wanted him to go (I had a horrible experience there a year ago and vowed never to return). I wanted to drive him to a much better hospital 15 minutes away. As I drove, John told me he still felt sick and his throat started to hurt again. In that moment I knew he should have been in an ambulance getting monitored instead of sitting in the front seat of my car.  I was so angry at myself – I should have known better. Lesson learned, and will never be forgotten.

When we got to the ER, it was of course, packed with all sorts of trauma; people throwing up, a knee gashed open from an accident, an elderly woman who was too weak to fill out her own paperwork and a little boy who split his eyelid open. I knew John’s vitals needed to be taken right away. When the woman behind the glass window asked me, “Can I help you?” I became the Shirley McClaine character in the film TERMS OF ENDEARMENT – the part when she started going crazy on the staff so they would give her daughter pain pills. Though I didn’t go that far, I did let the nurse know in no uncertain terms he needed immediate attention and told her what happened. I thought he might be experiencing a bi-phasic reaction. The nurse stood up and called a doctor right away and John’s vitals were immediately monitored. His blood pressure and pulse ox were subnormal. He was dizzy, quiet, and weak. He started shaking and shivering violently. He was nauseous and wanted to throw up. He look terrified and confused – wasn’t the injection supposed to make it all go away? I tried to explain to him, yes, many times it does. But sometimes the injection simply buys time, and the body continues to react.

I was alone with my son in the ER, holding him, pushing his long, golden hair away from his deep brown eyes and praying to God that his body would fight back. I was angry, sad, scared and numb. I told him he would be just fine, and that he would feel so much better soon. With every reassurance I gave him, I needed to tell myself. Eventually he did overcome with aggressive treatment and he started to feel better and his condition stabilized. The doctors and nurses were incredible, especially one doctor in particular. He spent a lot of time with us, and asked a lot of questions about food allergies in general. He told me when he was in medical school he wanted be an allergist, but the ER is where he landed. Before we parted, he told me he learned a lot from our case and thanked us.

Over the next few days things returned to normal for John. He went back to school, soccer, basketball and band practice. He hung with friends and played play station with his brothers. But for me, I was stuck in the sadness of watching my son nearly die from a goddamn popsicle. Everyone asked me all week – how is John? How are you? And every time they did, I felt the trauma all over again. I kept thinking about the Shannon’s, Hom’s and Giorgi’s – and every other family who have literally watched their child die from a food allergy. I wondered how did they ever find the strength to go on? How they continue to fight and advocate for the rest of our food allergy children? How does a parent go on after losing their child? I’ve lost both my parents (my father from lung cancer at 14 and my mom from pneumonia at 22), and that pain and loneliness never really goes away. But when I had my children I started to finally feel love once again. What I experienced with John last weekend rattled me to the core. I became numb and terrified and retreated into myself all over again – because the very thought of losing one of my children put me into a tailspin of pain and abandonment. It’s the unspoken symptom of being a parent of a child with a food allergy – the vulnerability and fear we live with every day. The fact that John could face anaphylaxis next week, next year, or maybe in 10 years is something we as food allergy parents have to live with. And then maybe that ONE time he wouldn’t make it. Like last Saturday. When he almost didn’t make it.  I know I can’t dwell on it, but I can’t forget it either.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Square One

IMG_3231I have taken my son to an allergist every year since his food allergy and asthma diagnosis at age one. And every year, I sit with his doctor and we go over his test results, talk about how to manage his medical conditions, get medication refills and new forms signed. But this year, for the first time in a long time, I sat there next to my freckle-faced, athletic, smart, empathetic and whip-smart funny son and CRIED. Why? Because I was told his asthma is far worse than it should be for a soon-to-be 12-year-old boy, and that his lungs are literally failing him. FAILING HIM.

I’ve written on this blog for many years about John’s severe food allergies. I’ve traveled the country to talk about food allergy awareness and advocated loudly for change in school policy. I’ve written cookbooks and taught cooking classes. But what I haven’t always shared is our battle with John’s asthma. Not because I didn’t want to. But because I didn’t know how to. Talking about lung disease has never been easy for me. I lost my father when he was 52 to lung cancer, my mother to emphysema/pneumonia at age 59, and I have battled my own asthma and chronic lung infections as well as my siblings. When John was diagnosed at a young age with asthma, I thought I was prepared to deal with it. I thought I knew how to manage it. I was wrong. I had no clue.

Today John’s doctor had a “coming to Jesus” discussion with John and I. Based on his updated lung function tests, his levels were triple the normal amount in a child his age. In other words, his severe asthma at age 12 could likely lead to COPD (Chronic Obstructive Pulmonary Disease) by the time he is in his 20′s and 30′s (an extraordinarily young age for this disease) if he continues to not aggressively treat and manage his asthma every single day. At this point in our conversation, she didn’t address me, but HIM. My preteen son, who more often than not is forgetting his Epi at home, eating things without checking and not taking his daily inhaler. Full disclosure: I have been gone and an absentee mom all summer traveling, going to school etc. and haven’t been checking as closely with his asthma medications. I feel totally responsible for the continued deterioration in John’s lungs. A horrible, horrible feeling.

She looked at John in the eye, and asked him, “do you really want to live a life with daily meds, steroids, oxygen tanks, and giving up an active lifestyle because you can’t walk a flight of stairs? What if you couldn’t shoot a basket or play a game of soccer? Do you want to give up the things you love because you aren’t taking responsibility for your life today? Don’t you think at your age you should become responsible for keeping your Epi in your own pocket and remember to take inhalers on your own in the morning and night?

She then looked at me, and told me flat-out that John’s lungs are in unusually bad shape for a child his age with no other environmental risk factors. She couldn’t believe that he is a starter for his travel basketball and soccer teams, and most of the time plays entire games without ever getting called out. She said the inflammation in his lungs is severe; a normal level is around 10, his is 65. She said not treating his asthma now while his lungs are still developing will guarantee COPD at a young age, an irreversible disease. She explained our hearts are our body’s engine. But engine’s need fuel…which is our lungs. Without the fuel (lungs) our engines (heart) stops. She also reiterated that based on John’s lungs, a simple cold to him could keep him in bed for weeks, or in the hospital, and continue to damage his lungs permanently. Based on today’s results, his daily medication was increased to the max for a child his age, in order to aggressively start reversing this damage. Next course of action….using medications approved for COPD.

I sat there painfully numb. As she described images to John of people with COPD taking steroids and using oxygen tanks, I immediately flash backed to my own parents’ lung diseases. As she spoke to John, I remembered my father’s lung cancer destroying his entire body and mind in a matter of months, faster than I could even process at age 14 that he was going to die. And disintegrate into someone I barely recognized. I then remembered my mother, my best friend and angel, going into the hospital December 23, 1996 for a back injury (brought on by the overuse of steroids to treat her emphysema) and never coming out. I remembered her weak body and lungs contracted bacterial pneumonia not once but twice while in the hospital, putting her into intensive care. And then ultimately, her heart stopped. Because the fuel (her lungs) ran out. Just like John’s doctor described. Then I sat there and sobbed quietly because I thought, not only did I fail to help prevent my own mother’s death by demanding her to quit smoking or get healthy, I didn’t check in on my own son for his daily asthma treatment. Here I was, running around doing this and that, only to find that I was failing my own son at home. In a moment, I felt such shame it was unbearable. Last year I first learned of the severity of my son’s asthma. This year I learned it got even worse. Under my watch.  I realized nope….I can’t do it all. No way.

John told the doctor, “I thought all these years my food allergies were the thing that could kill me. Never really thought about the asthma”. She reminded him that BECAUSE of his SEVERE asthma, and because of his SEVERE food allergies, he would go into anaphylaxis into SECONDS. Mere seconds. My son could die. In seconds. Barely enough time to remember where the hell his Epipen was if he maybe forgot to take it with.

Today was extraordinarily painful for me as a mother. Because I remembered what it felt like to watch my parents struggle with their health. I realized I failed in balancing my school and work and family life. And I remembered that advocacy, education, and awareness starts at HOME. It starts with me. It starts with John. BUT it also starts with my husband. It starts with his brothers and sister. It starts with all his aunts, uncles and cousins. It starts with his teachers, his friends, and his coaches. I can go talk at conferences, and schools and where ever else for years. I can hope that PTA’s and school nurses and moms who demand birthday parties at school will open their hearts a little wider with understanding for the health and well-being of these kids with medical disabilities. But none of it, and I mean NONE OF IT matters if we don’t start right at home. Something I personally needed to remember.

http://www.lung.org/associations/states/illinois/news/the-link-between-asthma.html

http://www.webmd.com/asthma/news/20100517/childhood-asthma-linked-to-risk-of-copd

http://www.health.com/health/condition-article/0,,20268528,00.html

http://www.lung.org/lung-disease/copd/

 

Will Farrell’s Bit at the 2013 Emmy’s….were you offended?

Will FerrellHi Peeps! An interesting discussion started on my Facebook feed today about my choice of sharing a video of Will Farrell at the 2013 Emmy Awards. As you may or may not have heard, Farrell brought his three kids on stage and did, what I thought, was a hilarious parody of not being able to find last minute child care for his kids. Watch the clip here and see for yourself what the whole bit was about.

My choice to share the video on my personal Facebook page raised some concern from a a few friends who were offended by Farrell’s “nut allergy reference” (though I still don’t understand what he was even trying to imply in his comment, because it was more of a rambling statement rather than a coherent one.) A reference was made about Farrell’s 2012 alleged prank on his cast mate, Zach Galfiadias who apparently had a life-threatening allergy. So, because I’m kinda lazy and don’t feel like editing my response about this from my FB page, and because what I wrote is really from my heart, I figured I’d just literally cut and paste my comment about it here, and open up the discussion to you guys. I’m very curious to know what you think. Were you pissed? Offended? Thought it was funny? Or not? Or did you even care? Let me know, because I’d love to know:

Will Farrell allegedly pranked his cast mate Zach Galfiadias, knowing he was allergic. The story was originally shared on The Daily Show, and I’m not certain it was determined if the event actually happened. But btwn that, the Portlandia bs segment, and many other things that have portrayed allergies as something that isn’t life-threatening pisses me off to no end. It always feels like whatever work I’ve done to advocate or educate is negated through people’s careless comments. I have learned over the years to really be thoughtful about the things I take issue with, because you simply cannot fight every fight, or tackle every comment or issue that comes up. I have heard my fair share, either directly or indirectly of really, horrible and mean spirited comments about the validity of my son’s allergies, or about my work, or my books. I’ve read vile comments about me in the comments sections of news articles. i have been emailed nearly every day or every couple days FOR YEARS from people who are pissed at me, my blog, my outspoken advocacy work. I have learned to ignore 98 percent of it now, because the negativity that used to be thrown at me would literally exhaust me. At some point I realized I have control over my reaction to such things, but I can’t control what others say or do. I fight like mad for our children’s rights at school, because that’s worth it to me. I don’t fight the shitty emails. I don’t fight the shitty comments I hear through the grapevine about me at the grocery store. I don’t fight dumbass comments. Regarding this clip, to me, it’s a hilarious parody of what every mom kind of has to go through…the nut allergy comment was literally “a nut allergy”…and the context in which he used it didn’t even really make much sense, so I really, truly believe he flippantly used the comment while he ad libbed through the segment with his kids. I honestly didn’t take offense to it because I didn’t see it as him trying to attack, or make fun of people with food allergies. Even so, it’s totally cool to get pissed off at his remark. I’m just not offended by it when there is so much other stuff I choose to take issue with. Now, the Joel Stein column? I DID take issue with that bullshit very loudly as you may recall in my blog years ago. That was worth it to me to call out. Will Farrell at the Emmy’s? Not so much. But believe me, if I ever did meet him, I would ask, and then if he answered like an ass, then he’d get my foot up his.

So what do you think about it all? And how do you feel about what you choose to take issue with or not? Do you pick and choose your battles? Or do you believe every battle is worth it if it means others will be educated about the dangers of food allergies? How do you handle negative comments?

Natalie Giorgi…

If you are a parent of a food allergic child, you probably already know who Natalie Giorgi was, and every detail surrounding her tragic death July 26th from an allergic reaction to a rice krispie treat. If you don’t know her story, read and watch the news clip here. I won’t go into all the details, as I think watching Natalie’s mother retell her 13-year-old daughter’s death in tearful angst is enough. Enough, I hope, to send ANOTHER wake-up call to anyone out there who questions the seriousness of food allergies.. a wake-up call to well-meaning parents who still insist on fighting food policies in classrooms that keep food allergic children AND teens safe. Accidents can and do happen. And they will continue to happen and innocent children’s lives will be at risk until we can 1. find a cure or 2. successfully advocate and get the message out that food allergies are dangerous and can kill.

Honestly, it’s very difficult for me to even talk about Natalie’s death, and watch her mother’s plea on TV to educate others about how a peanut allergy took her daughter’s life. Because no matter what is said about it, the reality is, this woman’s daughter is gone, forever. She watched her daughter dance. Then she watched her daughter get violently ill. Then gasp for breath. Then she heard her daughter say “I’m sorry” before she ultimately died after three epinephrine injections that were SUPPOSED to save her life, failed. THIS MOTHER WATCHED HER DAUGHTER DIE FROM SOMETHING SHE ATE. Can you imagine? The innocence of a 13-year-old girl just having fun on a camping trip with family and friends, only to end up dying because she took a bite of something that was made with food that could kill her. Can you imagine, just for a moment, what this mother, father, siblings, extended family, and friends are all feeling?  I have tried to imagine, and my heart breaks in two. My world would be shattered. Please pray often for this family.

So it’s the end of August, the beginning of the school year for children across the country. It’s a tough time for many parents who are sending their children to school with life-threatening food allergies. They must go in every year to review food policies in classrooms, snack lists, and stock nurse’s medicine cabinets with life-saving medication. They must sign up as the resident “snack mom” and “field trip chaperone” every year, in order to ensure their food allergic child is safe and feeling included in his or her own classroom. They must have meetings with their child’s teachers, principal, and school nurse about policies and (hopefully) Section 504 Plans, all designed to keep their kids safe. They also must endure the stupid and ridiculous comments and rants from some parents who howl at the thought they won’t be able to send in certain foods to class anymore because it’s dangerous for another food allergic child to be around. It’s tough all around. No matter what grade, or what age your child is, you’re always starting from scratch with new teachers, new classes, new everything.

I do believe things are shifting in a positive direction. I had the opportunity to attend a summit sponsored (and full disclosure, paid for) by Mylan. This summit was an incredible opportunity to talk about everything related to food allergies with top FA advocates, bloggers and activists. We literally holed up in a room and tweeted live about the latest research, listened to an informative and engaging panel discussion surrounding anaphylaxis and epinephrine access at schools across the country, learned about public policy and legislative updates and also discussed Mylan’s incredibly successful EpiPen4Schools program.

I was truly blown away by the knowledge, passion and purpose displayed by everyone in that room. I am also inspired by the leadership at Mylan. They are committed to the food allergy community through helping schools get access to epinephrine as well as offer a $0-Co-pay Card to help patients get afford up to three EpiPen 2-pack or EpiPen Jr. 2-Pak cartons per prescription. (see here for more information). I am very proud of all their hard work on behalf of food allergy awareness.

Looking forward, there is still much work to be done on behalf of food allergy awareness in our schools and in our communities. With the new school year here, now is the time to schedule a 504 Meeting with your child’s school to determine eligibility. My former state in IL did and EXCEPTIONAL job in creating everything you need to get your school up to speed on food allergy policy including sample 504 Plans, sample classroom letters, sample food free classroom celebration ideas, etc. I am still trying to get my current state of CA to start drafting some of these important protocols, but it’s definitely a work in progress. Follow this link to get you started with the right tools.

 

Finally, I will be at three events coming up this fall and would love to see you there if you are in the area:

October 12, 2013 Bay Area FARE Walk/Run for Food Allergies in Memory of BJ Hom: I am honored and excited to be a part of this amazing day. I will be selling and signing books and a portion of proceeds will go directly back to FARE.

October 27, 2013 Los Angeles FARE Walk/Run for Food Allergies: SO excited to be back at this walk. We had a blast last year! I will be selling and signing books and donating a portion of proceeds directly back to FARE.

November 2-4, 2013: FABC: Food Allergy Bloggers Conference: This is an inaugural year for the FABC conference and am SO excited to be a part of an amazing group of speakers! Please see the website for ticket information and the schedule.

Enjoy the last days of August!!!! xoxo

Join me tomorrow at Google+ to talk all about food allergies and more!

Hi everyone! Is it really August already? Many of you already have kids going back to school starting today, and many of you will send kiddos to school in the coming weeks. It’s the perfect time to talk about food allergy awareness, 504 Plans, classroom safety, tips, recipes and everything else you need to get organized for the beginning of the school year! Join me, as well as Mom.me editor, April Peveteaux and author of “Gluten is My Bitch”, and Monique Ruffin LIVE for a Google+ Hangout at 10 am PST/1 pm EST TOMORROW August 8th. We will talk ‪#‎Gfree‬ and ‪#‎FoodAllergies‬…perfect as everyone heads back to school.

We will talk about the biggest misconceptions of food allergies, fears of moms with a child who has food allergies, and the best tips! Comment in advance with questions and we’ll answer as many as we can! Come back for the live stream even Thursday, August 8th at 1pm EST / 10am PST. RSVP HERE. 

In addition, if you are in the LA/OC area, come hang out with me and allergy-friendly bakery Sensitive Sweets in Fountain Valley on Thursday August 15th at 6 pm PST. Space is limited so be sure to RSVP.  Along with FARE, I will be talking about 504 Plans and food allergy awareness in school, as well as answering your questions. AND if you order from Sensitive Sweets on August 15, 20 percent of the proceeds go directly to FARE.

You all know how passionate I am about food allergy safety at schools, and the importance of 504 Plans for your food allergic child. I’d love to take your questions too, so please fire away with any comments or questions you may have.

Have a happy day!!

xo

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

 

Baking with Martha Stewart ;)

I’m so excited to tell y’all that I’ll be on The Martha Stewart Show, December 16th at 9 am CST/10 am EST on The Hallmark Channel. We’ll be talking about baking allergen-friendly recipes for the holidays, and I’ll show Martha my favorite holiday treat; dairy, egg and nut free molasses cookies. (If you need a wheat free/gluten-free version simply swap the wheat with your favorite gluten-free flour blend). Martha has really embraced learning more about the world of food allergies, and is one of the only cooking experts to even tackle this issue in a mainstream forum. My dear friends Cybele Pascal (author of Allergen-Free Bakers Handbook & Whole Foods Cookbook) and Lori Sandler (owner of Divvies Bakery and The Divvies Bakery Cookbook) were the first fabulous food allergy mamas who appeared on Martha’s show the past few years, and really paved the way to getting the word out on delicious and easy allergen friendly recipes for our families. Because of their hard work and advocacy, more people are talking about our world, embracing our challenges and now baking wonderful allergen free treats that everyone enjoys. But another HUGE food allergy advocate that you may not know about is one of Martha’s senior producers, who is the leading force behind getting our story told. She lives as a food allergy mama like the rest of us, and has been a silent advocate in getting a big name show like The Martha Stewart Show to cover food allergies and recipes. It really is because of her tireless work on behalf of all of us that these stories are told. A big, huge, enormous virtual thank YOU…you are one of the unsung hero’s of food allergy awareness.

The clip will most likely be on Martha’s website tomorrow, and it would be fantastic if you all could show your support of these types of segments by posting a comment to the video clip. I know that if Martha’s staff could see how much these types of stories mean to us, and that there is a huge demographic of viewers that want more allergen aware segments, they would possibly be open to even more of them in the future. The more mainstream food allergy coverage is, the better for all of us. When we get people talking about it, we bring awareness. And awareness brings compassion and diligence.

I’m so proud to be a part of such an amazing and support community of parents who are so passionate about food allergy awareness. Simply read my previous post, and all those incredible comments from so many of you, and you can literally feel the positive and warm energy. Your comments brought tears to my eyes, time after time. I’m beyond grateful to have you all to connect with. There are so many advocates, too many to name here, but who are always working behind the scenes and in front of the scenes to get the right information out there. I thank my lucky stars for you every day.

One more thing, my all time favorite site in the world for food allergy info, FAAN is posting another one of my holiday recipes on their blog FAANnotes. I hope you enjoy it.

Happy Baking everyone and a VERY VERY Happy Holiday Season to you and your families!

xoxox

 

 

A happy and proud food allergy mama…

My food allergic son John will turn nine Wednesday. I know we all cherish our children’s birthdays, but for me, I especially thank God every year on John’s birthday that he is alive and well, and pretty much like any other 4th grade boy who loves sports, playing guitar and hanging with his friends. I used to dread John’s birthday because I was reminded of all the things he COULDN’T have; pizza, cake, cupcakes, candy and ice cream. But for several years now I am reminded of everything he CAN have, and that his life is by no means living without. John lives as fully as any kid I know, and appreciates every little thing in life (for example, his sincere joy and gratitude from being able to eat a peanut free Vegan Ice Cream cone at Lollapalooza this year…he truly enjoyed that moment for all it was worth). I think sometimes as a parent of kids with food allergies and special needs, I get weighed down by advocating and keeping my kiddos safe and happy. But I’m increasingly letting go and trusting that all will be well. Always vigilant, of course, but trying to infuse way more fun and timeless carelessness into our daily lives and routine. This year, on John’s birthday, I will light a special candle for him and for all the kids out there who perhaps were given the short end of the stick, whether it is with food allergies or with learning disabilities or serious illnesses, EVERY child deserves to feel like they are like any other kid.

Finally, after years of debate and efforts to promote food allergy awareness at my son’s schools, the day has finally come where I feel like we have made TREMENDOUS progress. Today I attended our schools’ Room Parent Meeting, to which our principal got up and addressed the room parents about the seriousness of food allergies, and that new procedures will be in place. For example, our school will celebrate birthdays AND holiday parties in a NON food manner for Kindergarten, First and Second Grades. The third and fourth grades will be up to the discretion of the classroom teacher. Grade level parties will be conducted with NO FOOD (remember my 1st grade Spanish Mercado and Thanksgiving Party stories?). Finally, the district has developed a comprehensive list of Food Allergy Policies and Procedures, as well as specific Food In Classroom guidelines. The link is here and I strongly recommend you forward these documents to your schools and preschools so they can further develop their own safe food allergy best practices. There are also sample letters and tips for you to use. During my principal’s address today, she went out of her way to mention that if any parents in their children’s classrooms have concerns about No Food Parties, or are getting any push back about safe snacks, etc. (ie Dairy Free classrooms, etc) that they should contact her directly. She doesn’t want anyone to feel like they have to defend the policy, and that she will take the time address the seriousness of the food allergy policy. As a “food allergy mama” advocate, I have had more than my fair share of parent push back on food policies I’ve advocated for years (thanks to our rights outlined in John’s 504 Plan). Hearing this come out of my principal’s mouth meant the world to me, because it allows me to not be the “face” or take on the burden any more. I’m truly grateful and excited for these new policies, and hope you can use some of the documents in your own schools.

Have a GREAT beginning of the school year everyone!!!

Summer is almost over, school is about to start, are you ready?

Howdy! Wow, I feel as though I’ve been kind of a loser blogger this summer (seeing as I have only averaged one measly post a month!). But I honestly needed the break. Last spring was so crazy emotionally and physically that I had to step back and just hang out. It was a great summer of a whole lotta nothing. This month in particular has been a blast:

LOLLAPALOOZA: My FA son John attended this amazing 3 day music festival for the 3rd year in row…not bad for a soon to be 9-year-old boy! John is a true music lover, and enjoys everything from rap and techno to reggae and rock. He will sit patiently for hours and listen to a new bad he hasn’t heard before, or roam the enormous festival grounds and take in a view of the masses. I’ve taught him the two most important lessons while attending music festivals; watch where you are walking (in order to avoid stepping on something you don’t want to) and when using the portapottie, focus on happy thoughts and get in and out very quickly. John’s personal highlights included seeing Foo Fighters and Deadmau5 live in the pouring rain and getting a decadent Chocolate Chip Cookie Dough Ice Cream Cone at the Temptation Ice Cream Booth (Vegan Ice Cream made by the excellent Chicago SoyDairy. It was the coolest thing to witness; a food allergic kiddo ordering his own cone at a music fest:

 

 

 

 

Big kudos to the Lollapalooza staff because they allowed us to bring in our own safe food for John in a cooler as long as we had a doctor’s note. Security was pretty cool about it, except for one jerk who questioned my note, and said any person can fake a doctor’s note. I looked at him with my best evil “Don’t F**** with me” look, one I think only a mom can really give, and then kindly asked if wanted to “search” the contents of the cooler to make sure I wasn’t smuggling in other stuff I shouldn’t be smuggling in. I was half-joking, but he got all serious and dug into the contents. Once he saw graham crackers and a turkey sandwich I think he felt like a tool. Or at least I hoped he felt like a tool.

So now that summer is winding down, it’s time to shift gears from lazy to crazy. Except this time I’m going to go less crazy and not stress as much as I used to about getting my kids ready for the school year. I’m not buying any new school clothes until it’s REALLY fall, I’m not going to be a room parent for the first time in 9 years, and I’m going to think positively that all the hard work of developing IEP’s and 504 Plans last spring will pay off this fall. But just to be sure, I have contacted my FA son’s school principal to facilitate a meeting with our nurse, assistant principal and teacher. John’s 504 can be carried over annually until 2014 (when we reassess eligibility) but I always like to make sure everyone is on the same page from day one so there is no confusion down the road. Many of you have written and asked me about 504 Plans, and how to draft them. If your child has a life threatening food allergy, he may qualify if he “has a physical or mental impairment which substantially limits one or more major life activities, such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working, eating, sleeping, standing, lifting, bending, reading, concentrating, thinking and communicating”. Schedule a meeting BEFORE school starts with your child’s principle to determine eligibility. In regard to how to word the language in the 504, it’s simple. Ask for as much protection you think your child needs because it is your child’s legal right, and ultimately your child’s school will want to keep him safe. After many years of tweaking John’s plan, here is what I asked to be written in the document, and what was agreed to by all parties:

Medical 504: John must have medications at school (Benadryl and Epipens) in case of accidental ingestion of allergens above (name allergens, history of reactions, how your child reacts (ie via ingestion, touch) and indicate whether your child has asthma.) John’s classroom will remain peanut free and dairy free. John has the option of eating at the peanut free table in the cafeteria during lunchtime. Care must be taken that John is not given any foods containing milk, peanuts, tree nuts, legumes and or peas. John’s parents must be notified anytime other than usual snack time, that food will be offered in any of his classes. Parents will then come in and examine the food labels to check for allergens. Students, in any classroom John is in, will bring their own snack and there will be no sharing of snacks. Parents of John’s classmates will be given a letter on food allergies at the beginning of the school year. Parents will be given alternative activities for birthday parties (no food will be served). These include reading a book, leading a game or sending non food goody bags. The nurse will provide information regarding John’s allergies and asthma to all teachers that work with John including specials teachers. An extra epi-pen will be kept in the cafeteria. John will wear a medic alert bracelet. The school staff will be trained in the use of the epi pen at the start of the school year. If John has an asthma attack, he will be escorted to the office by an adult and the nurse will administer Albuterol inhaler as per doctor. An Emergency Action Plan is in place. A copy of it is in the substitute file, in the nurse’s office, and attached. John’s reactions to his allergens: hives, itching, mouth hurts and vomiting, difficulty breathing. When staff members observes hives he will be given xx dose of Benadryl immediately. The parent will be called to pick up John. If John complains his mouth hurts, coughing, itchy throat and difficulty breathing, and it appears to be allergy related, the school staff will administer the EpiPen. The school nurse will be contacted and 911 will be called. Then the parent will be called. John’s medication, wet wipes and EAP will go on all field trips with him.

Feel free to use this 504 Plan for John as your own guide in developing your child’s specific plan.

Finally, I wanted to share a link for you to check out, and go vote for me as a “Momimee” at Babble. The winner with the most votes gets $5,000 to go toward their favorite charity (which would be FAAN and FAI for me). My BFF in Arizona nominated me (unbeknownst to me), and I’m thrilled and honored. Pass the word along in the food allergy community and vote HERE . Every dollar for food allergy awareness counts!!

Have a great last few weeks of August everyone and totally looking forward to working a little harder in the fall! xoxox

My newest projects….

Hi everyone! I check my blog on a regular basis to read all your comments, and then realized, oh my goodness it has been a solid month since I last posted! SOOOO not like me! But please know I’ve been busy doing other food allergy related projects such as writing new recipes (not ready to post yet, but will soon so keep checking back) and working on some new blogging/contributor projects such as:

Contributor for the super cool Robot Vegan: I can’t scream loud enough about how much I LOVE and ADORE this site and group of cool chics. The site recently went live and already has so much fabulous information, recipes and articles. Take a minute to browse through their site and get hooked. I will be doing some recipes and Ask the Expert Column for them, and will have something on their site VERY SOON. Work in progress and can’t wait!!

Cooking Light Tried and Tested Blogger: I’ll be testing some new recipes (see below for my first one) for Cooking Light, a longtime favorite magazine of mine, and posting the results and recipe for y’all to try as well.

Expert Blogger at Martha Stewart’s Whole Living: I’ve already done a few GF Friday posts for Whole Living, and have a brand spankin’ new Gluten and Allergen Free one coming your way in the next few weeks.

Top 100 Mom Food Blogger Bites Contributor: As a Babble Food Blogger I’ll be sharing my favorite tips and tricks to get in and out of the kitchen fast. When you have a minute check out all the bloggers, I’ve already scooped up some fabulous ideas from these superwomen who like to cook and love to eat!

Guest Blogger for Williams-Sonoma’s company blog “The Blender” : I’ll be doing some kid friendly and allergy aware recipes and meal tips…not posted yet but coming very soon. I love this blog; it’s filled with some great tips and recipes, and just love WS in general.

Yet to be named Screenplay:  Totally off topic from my normal writing duties but boy am I having FUN with this! In my previous life before kids, carpools and writing cookbooks I used to be a news producer/writer and dabbled in screenwriting then too. Though I never sold a script, I hope to finish a couple of stories that have been brewing in my mind for a long time. It takes time do this sort of thing, but slow and steady wins the race I guess, right?

But the most time-consuming thing I have been doing lately is simply enjoying the sunshine and lazy days of doing nothing with my kids. We’re not doing anything fancy, just catching some fireflies, digging for worms and eating lots of popsicles. I hope you enjoy the rest of your summer, keeps sending me your ideas and suggestions, and let me know what you think of this new Cooking Light recipe!

SHREDDED CHICKEN TACOS WITH TOMATOES AND CORN courtesy of Cooking Light

This recipe has quickly become my newest favorite dinner to make for my family, and with the hot and humid weather, one I am making a lot. I don’t have to fire up the grill If I don’t want to slave over hot coals in 100 degree heat, and the entire dish can be finished in under 30 minutes. A few personal modifications:

  • I used Gluten Free/Wheat Free tortillas instead of the suggested corn tortillas with excellent results.
  • Broiling the corn using shredded rotisserie chicken is a HUGE time saver, but I’ve also used leftover grilled chicken and corn with excellent results.
  • I love the addition of extra veggies, and have successfully used leftover roasted red and yellow pepper as well as some grilled zucchini. The more veggies the better.
  • If you don’t want to use any tortillas this is a fabulous dinner “salad” as well. Add fresh basil for more flavor.

This recipe is healthy, fast and delish….a keeper for sure.