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

Just wanted to give y’all a heads up that I will be doing some blogging for Martha Stewart’s Whole Living site. I’m very excited as it is another way to reach a whole other audience with great allergen friendly recipes and tips. I’d LOVE LOVE LOVE for you to show your support for my posts on her forum by clicking here and leaving a comment or question for me. You guys have all been my biggest support system and have helped me so much with your limitless helpful comments and supportive words. So many of you have helped me with every recipe I develop through your testing, reviews and even fabulous hints and substitutions. I can’t thank you enough for making this blog as great as it is…it’s only as good as the wonderful people who read and contribute to it. I hope my contributions at Whole Living will be just as helpful.

In addition, if you are in the Chicago area please come tomorrow to the Gluten & Allergen Free Expo in Lisle, IL. I will be there doing a demo on how to bake for Allergen Free Parties on the Public Stage in the Vendor Fair at 11:45 a.m. I really hope to see some of you there!! The event runs through Sunday and it is not to be missed. So many of your favorite authors and bloggers are going to be there and I can’t say enough about the founder Jen Cafferty, who never ceases to amaze me with her creative spirit and energy. This is a HUGE event to pull off, and she does it so flawlessly.

Finally, Food Allergy Awareness is week is only a couple short weeks away. This is a fantastic opportunity to get into your child’s school to read a story about food allergies, talk to your school administration and lunch staff about safer and healthier food practices at school, telling friends and neighbors and writing letters to your local media. EVERYONE can contribute their time and talent to get people talking about food allergies, and what we can do about them. FAAN has done a stellar job in putting together easy school presentations and more. Go here to find out more and how you can help.

Thanks again everyone and hope to see many of you over at Whole Living!

xoxox

As in years past my favorite part of the FAAN conference was the networking lunch where I had the opportunity to meet some wonderful parents who live with the same daily fears that I do. We talked mostly about our lives as parents of food allergic children; the first scary diagnosis, the first birthday party, the first cafeteria experience, the first plane trip, the first date, etc. I met some amazing moms and dads, and wish that lunch lasted a little longer. I always come away feeling comforted by the fact there are so many of you out there, living with food allergies, and living well. I can’t wait to see many of those same faces next year.

The first annual THRIVE Allergy Expo at McCormick Place in Chicago was also this weekend. I attended Sunday with my food allergic son John. It was meant to be a special outing for just us, a place where we can learn everything about new allergy aware products and attend some fun cooking demonstrations and informative panel discussions. 10,000 people were registered but I was told by expo organizers a little more than half than that number attended. Whether it was because it was an inaugural event or because of the Saturday conflict with FAAN I hope to see greater numbers next year. The organizers did a fabulous job in a scheduling a diverse number of vendors and speakers. My only complaint was that the food options were very limited. We ended up having lunch outside of the expo – go figure!

I met a lot of fabulous new vendors and topic speakers but two of our favorites were Sweet Alexis dairy, egg and nut free sweets (hmmm…wonder why that would be my favorite!) and the Angel Service Dogs. I met Michelle Fellows and Aimee Lithwin from the allergy concious bakery Sweet Alexis and they were both were sweet, full of enthusiasm and  deeply committed to food allergy friendly treats. In fact, their delicious chocolate chip cookies were the only sample John could eat there (again, go figure!). Definitely check out their online bakery for more yummy dairy, egg and nut free treats at www.sweetalexis.com .

We also had the amazing opportunity to meet the adorable Angel Service Dogs. These aren’t your ordinary cute pooches; they are truly your child’s best friend as they are raised and trained as a service dog to your child’s specific allergy. They can sniff out potentially fatal allergens and alert their owner. These dogs can travel with your child to restaurants, birthday parties, and even on plane rides. Visit their website www.angelservicedogs.com for more information. I wish I could have brought home the little black lab puppy; they were so good natured and sweet.

Another guest I enjoyed meeting was singer/songwriter Kyle Dine. Think a slightly younger Ralph Covert of Ralph’s world; hip, young and fun but the beauty is all his songs are about food allergies. Songs like Eip Man and That’s a Peanut are wacky and a load of fun. Check him out at www.kyledine.com .

Finally, one more reminder about the Children’s Memorial Food Allergy Study. We need more families (allergic and non allergic control families) to sign up in order to gain the full benefit of this groundbreaking study. Your participation will directly impact the future of finding new treatments for food allergies. If you or someone you know lives in the Chicago area, please encourage them to call Deanna Caruso, project coordinator at 312-573-7755 to register.

That’s all for now folks. I have to get back to eating my last Sweet Alexis cookie.

Some of the highlights are the creation of a large study database filled with important statistical information that will help us understand more about food allergies in children, identify the genetic and environmental roles, understand why the numbers of food allergies in children are increasing and provide information to the medical and patient community. These are all very important developments as the scientific community moves closer to understanding the core of why food allergies occur, and maybe someday….find a cure.

Until that day comes please do all you can to support this study. If you live in the Chicago area you can enroll in the study either as a family with food allergies, or as a non allergic control family. So far over 700 families have enrolled; nearly 600 case families with food allergies, and over 100 control families without. These numbers are strong but the CMH Food Allergy Study could use more help. Enlist your friends or relatives to donate their time to this cause. They can call Deanna Caruso, Project Coordinator at 312-573-7755 or email at dcaruso@childsmemorial.org .

If you would like to offer your philanthropic support to Children’s Memorial Hospital contact the Children’s Memorial Foundation at 773-880-4237 or email foundation@childrensmemorial.org. Any donation, big or small helps fund these very important programs that could ultimately change the lives of our children forever.

As a side note, my family of six has participated in this study for the past three years and I am always impressed at how fast and efficient the visits are. Bringing in all my children for testing seems like a big deal but really it is a piece of cake. The visits always go fast and the nurses and research associates are very professional and skilled at making the evaluations fun for the kids. Thanks so much for all your help in making this study a huge success.

Apparently a few of her colleagues responded in hateful tones about the seriousness of food allergies. I’m paraphrasing here, but it went something like “Sure, I’ll give up sending cupcakes to school with my kids. Then let’s ban peanuts, and milk from lunchrooms, etc”. These comments were allegedly made with a sarcastic tone, though I wasn’t there to personally hear them. But I don’t dispute it because over the years I have heard my own snickers and comments from less than understanding parents who are so fortunate to not have to live with the liability of a food allergy.

Which brings me to another point about recent comments in the media downplaying the seriousness of food allergies and the resulting deaths. FAAN even went so far as to make a statement on their website about this, commenting that the numbers are real, and that even one death is too many. And they pose the bigger, more important question: Why are people dying from food allergic reactions? What are we doing to prevent them? My question is why haven’t we found a cure yet? We understand the science behind what occurs during an allergic reaction so why can’t we figure out how to prevent them?

Parents with food allergic children have two very important jobs: a. educate others about the real danger of food allergies, and b. keeping our children safe and alive. There is no room for sarcasm and uneducated comments. I assure you that if even one of those parents received a diagnosis of a life threatening food allergy from a physician their quick witted comments would halt.

What bothered me most about my friends’ colleagues is that these are seemingly educated school professionals. Why aren’t they trained to know the difference between an allergy and an intolerance? Why are they joking about our children’s safety and well being? Furthermore, why are these people working in a school district when they apparently have no regard for 504 Plans and disabilities?

This is exactly why my new years resolution is to do everything I can to raise awareness and educate others about food allergies and its dangers. I know we all have done so much to bring attention to this in our schools, playgroups, camps, sports teams, restaurants, airlines, in laws, the list could go on. But clearly it isn’t enough. It won’t be enough until more federal funding is awarded to the research and education of food allergies.

In the meantime, I am so thankful to have you, my readers and fellow blogging friends who truly understand and live this reality every day. Your support, comments and helpful advice mean so much. Thanks to you all and happy new year!