Dealing with Food Allergies in the Lunchroom

My previous post Trust in the Lunchroom prompted some great questions about keeping your child with food allergies safe in the lunchroom. I empathized with all of your comments, and thought it might be helpful to share my personal experience in my son’s school. I agonized over the first day of First Grade from the time my son was diagnosed with his life threatening food allergies. I visualized “Boy in the Bubble” and total exclusion from his peanut butter eating peers. I recall just putting it out of my mind as I had bigger fish to fry; the preschool snack time.

But then that day came last August as my son started First Grade.  For years I assumed my son would never ever touch cafeteria food because of the cross contamination issue. Anyone familiar with the Sabrina Shannon story understands why we as parents are so fearful of this. But I had to find out once and for all if this was going to be the case his entire elementary, middle school and high school life.

Two weeks before school started I scheduled a meeting with the school nurse, principal, the school district’s director of food service and the head chef (I call her Chef Lady). I wanted to understand the school’s protocol for handling food service for those with food allergies as well as their emergency action plan in the event of an allergic reaction. To be clear, my school district is widely recognized as forward thinking about food allergies. The school nurse makes sure every food allergic child has an allergy action plan. But the lunchroom policy wasn’t as great. Epipens were not allowed in the lunchroom and it was previously understood that if a child experienced an allergic reaction then the lunchroom staff would promptly notify the school nurse down the hall. Again, anyone familiar with Sabrina Shannon knows this plan of action isn’t good enough and leaves room for error.

In accordance with my son’s 504 Plan, I required the school to designate ONE person to hold John’s Epipen IN the lunchroom. She is trained for what symptoms to look for, (physcial and verbal cues, ie. saying his throat is scratchy, mouth hurts, hives on or near face, excessive coughing, etc. ) and to take immediate action with the Epipen,¬†next call 911, then call the nurse to call me. Plain and simple. I questioned why the school never previously allowed these life saving devices in the lunchroom as it seemed like a no brainer to have one there (as opposed to a cabinet in the nurse’s office). I also made sure that John knows exactly who to go to if he feels he is having a reaction.

As with most school lunchrooms John sits at a peanut free table. I used to visualize him sitting alone at this table, maybe with one or two other kids. Sadly, there are lots of kids at this table, as evidenced by the huge upswing in peanut allergies the past 10 years alone. This only reinforces the belief that the incidence of food allergies is increasing.  John never feels alone and has more than a few friends there.

Now for the tough part; ordering cafeteria food. As I said before I never thought this would be an option due to the severity of John’s multiple allergies. I flat out said no way, no how is he ever going to order food. Then John told me how much he really really really wished he could order a couple of his favorite foods. Turkey and soy nut butter sandwiches every day does get a little monotonous, after all. I had to think long and hard about this and wasn’t sure I could ever comfortably say yes. But out of respect for him I had to find out for sure (it also has a little to do with the former reporter in me, I can never let something go unless I find out myself).

During the August meeting with the school we discussed the menu at length. I determined which foods I though might be safe (like baked chicken breast on whole wheat, plain pasta or sloppy joes) and asked for an extensive ingredient list of each. Then I requested the phone numbers and contacts of the food vendors who supplied the foods so they could release an allergen statement and listing of ingredients. I also had a long discussion with the director and Chef Lady about cross contamination issues and how to safely prepare a tray of food for John that wouldn’t in any way get in contact with other potential allergens. In addition,¬† the one or two times a month John orders lunch I physically go to the school cafeteria that morning, recheck the ingredient labels and reinforce the food preparation techniques that will need to be used that day to avoid cross contamination (ie, no buttering of pasta, no sharing of food utensils, etc.) Finally, John only goes to the kitchen for his “special tray” to ensure that he is indeed getting the “allergen free” lunch.

Even with all these extra steps I still worry, and probably always will. But it is important to teach John that it’s OK to eat out, with the appropriate precautions taken. There will be a day he won’t be sitting at my dining room table, and the sooner he learns how to advocate for himself the better. But believe me, I will be watching him like a hawk until that day comes.

Trust in the lunchroom…

Today at 11:20 am I felt like I was sitting on pins and needles. I was anxious because I let my 6 year old son John buy lunch in his school cafeteria without physically walking into the lunchroom and speaking with the head chef. John’s lunch hour is during this time and I literally sat by my phone waiting in case something went horribly wrong and John suffered an allergic reaction. A neighbor was taking my two older children to school while I prepared to go to my youngest son’s speech therapy. I only had time to call the lunchroom but the head chef wasn’t picking up. I called back the office and even the regular secretary wasn’t there. So I left my detailed message with a secretary I didn’t know, placing trust in the fact she would deliver the message about John ordering lunch today and what he could/couldn’t have. Toward the end of the conversation I felt a lot like the Shirley Maclain character in “Terms of Endearment”, when she freaks out on the hospital staff because her daughter didn’t get her pain medication on time.¬†I repeated the directions to this new secetary a few times, reiterating that it was VERY important my chef lady got the message verbatim, or else my son could suffer a life threatening reaction. She seemed to get the picture.

I know to some this may seem ridiculous but for us food allergy mama’s it is a very real fear. There is always that one chance that something could go wrong, a slip up could occur and then our child’s life could be in jeopardy. Almost as soon as I hung up the phone I wanted to drive over to the school to find my chef lady so my mind could be put at ease. But I sat back and trusted it would all be OK.

To my knowledge (it’s 1:28 pm Chicago time and the first grade lunch is over) it turned out OK. I know some of my mama friends who don’t have to live with food allergies would think I am a total nut (pun intended) but I don’t care. I will never stop worrying or caring about how to keep my son safe and alive. I know so many of you feel the same way too. That’s why I know I can admit my temporary moments of insanity with you and you’ll get it.

More food allergy stories…

I thought my fellow food allergy readers would appreciate reading this article written by blogger Michael Natkin at www.herbivoracious.com. His wife suffers from life threatening food allergies and has had several severe reactions. Michael discusses their experiences at restaurants and gives tips on how to navigate through a restaurant with food allergies. It is a well written article that I hope is read by waitstaff, chefs and restaurant managers.

My son John¬†has¬†multiple severe food allergies¬†so we rarely eat out in general. Reading Michael’s post reminds me that we¬†need to keep on our toes in the rare event we¬†go out to eat in¬†a restaurant.¬†¬†Thanks to Michael for sharing his story.

What six year old boy wouldn’t want to go to Disneyworld?

Apparently mine. Here’s the story: with the exception of a few road trips, our family has yet to take that long family vacation to faraway and magical places. John’s severe peanut (among his other allergies) have made us think twice before booking a flight or hotel room. It’s not the only reason we have hesitated. The past four years alone have been busy with moving, starting a business and having two more babies (15 months a part). However now we want to do something special, something that requires us to take all four kids on the plane. We want to go to Disneyworld.

¬†My eight year old has already lost her interest in all things princess but I am¬†hoping the magic of Disney will still cast a spell on her. My two and three year old are obsessed with everything Disney related so I am fairly certain they will have the time of their lives, whether they remember it or not. It’s my six year old, John, that¬†I am worried about. Not just for the obvious reasons of food safety, cross contamination issues and such. What I really worry about is that if I don’t help him to venture out and see the world a bit more than we have the past six years he might develop a complex about his food allergies.

When we finally brought up to the kids this weekend that we were pondering¬†a trip to Disneyworld for the first time everyone squealed with joy; except John. He became withdrawn and grumpy and didn’t really want talk about going. He asked if we could just stay home and maybe go bowling or mini putting somewhere. My response went along the lines of “Are you crazy??” (in a joking manner of course). But when I took him aside to get to the root of why he didn’t want to go it was obvious the reason was because of his food allergies. He worried about his safety and whether or not he’d have anything safe to eat that wasn’t in the comfort of his own home. John was geniunely sad and confused. I had no idea the emotional toll his food allergies had taken on him. In his six short years he’s only known a world with food allergies. He knows he has to take extra precautions, his mom always has to make special food for him and we can’t casually go to just any restaurant unless every ingredient has been fact checked and verified safe. It’s a lot for anyone to deal with, let alone a six year old boy.

In that moment I realized that not only is it my job to keep John safe but¬†also¬†to help him live more freely. I need to help him understand that it’s OK to be a little nervous about certain situations but it doesn’t mean in any way that he can’t have fun or enjoy the things other kids enjoy. Sure he has to be vigilant about the food he eats but he can also be just like any other kid.

I’ve tried over the years to educate John about food allergies and how to become a self advocate in the event¬† I wasn’t there. But I think I need to start easing his anxiety over travelling away from home and being in an unfamiliar environment. I think I need to start easing my own anxiety about it as well.

If any of you have any tips about travelling to Disneyworld I’d love to hear them. Or maybe you have tips in general about travelling with food allergies. I’d love to hear them all.

The size of the hive…

Yesterday I took my son John to Children’s Memorial Hospital for his food allergy testing. I’ve written about this clinical study in past posts. Every year our family of six participates in this groundbreaking study about food allergies and its connections among family members. It is a wonderful feeling to know that one day a year we are making a true difference as a family in furthering the education and awareness about food allergies. When I discussed with John as we were in the waiting room he had a huge smile. The thought of maybe someday finding a cure for this life threatening disease is something worth smiling about.

During the course of the testing all my kids went through the routine skin and blood testing. However, when John had his skin test, the peanut and milk “hives” on his skin were off the charts. Those two red hives were so big and so itchy that the nurse had to cleanse the area several times and apply ice packs. Just that one little prick of allergy onto John’s skin made his skin react severely. I couldn’t help but wonder…what if that amount was mulitplied and ingested? As a mother my heart sank, my stomach dropped and my hope that maybe his food allergies were decreasing were crushed.

The size of that hive was a painful reminder that until we find a cure John’s life is always at risk. One slip up, one time there is a cross contamination issue or one time I forget to bring his medicine kit with us could cost him his life. It is a sobering thought. And it is something that keeps me up at night.

Field Trips and EpiPens

I think I can safely say that as parents of food allergic children, it takes a certain amount of letting go and trust when it comes to school, parties, playdates and field trips. My first grader, who is severely allergic to dairy, peanuts, tree nuts and legumes (as well as asthmatic) is pretty well versed on how to keep himself safe in food situations. I say situations, because for these kids, it is something they always have to be on guard for and be able to self advocate. Which brings me to a concerning issue that was recently brought to my attention.

Several weeks ago my son attend a field trip to the zoo. His teacher, who is trained on how to use epipens and what symptoms to watch for should he have an allergic reaction , was not assigned to his group; another parent chaperone was. She had no medicine kit on her, and didn’t even know she had a child with severe food allergies in her group. Furthermore, the children were offered cheese crackers as a snack. Thankfully my first grader politely declined and said he was allergic to cheese. My immediate concern was, what if the cracker seemed safe, but still had milk ingredients in it, or even nut ingredients? In a large zoo, where the classes were spread out, what would have happened if someone couldn’t find his teacher in time, to get the medicine kit to him? All that valuable time would have been lost, and if a reaction had occurred, it could have cost him his life.

Case in point number two: On yet another field trip to a botanical garden just two weeks later, another parent chaperone who is familiar with my son’s allergies let me know that children were opening peanut butter sandwhiches left and right during the picnic lunch time…right next to my son. I have always been the first to say that it is probably unrealistic to ban specific foods in the cafeteria at school, but field trips are different. The environment is¬†unpredictable, usually more close knit and not as closely monitored by school staff. Also, all those brown lunch bags are not always sealed tight, and are stacked on each other during transit on the bus. I firmly believe that peanut butter, especially because it is an airborne allergen, should be eliminated from school field trips.

These are just two recent situations that we lucked out on. What bothers me is that mistakes can and do happen. And we’re trusting other people to keep our small children safe. It is a hard pill to swallow sometimes.