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

Dairy, Egg and Nut Free Dinner Biscuits

Happy Holidays everyone! A Facebook friend of mine requested I post the recipe for my Dinner Biscuits, and thought of course…it is the PERFECT biscuit to serve alongside your Christmas or New Years Dinner. I always make a ham for Christmas dinner, and these biscuits are so delicious with it. It literally takes minutes to mix everything together and pop into the oven to bake just as your guests are arriving. Plan ahead and have everything pre-measured and ready to go. Mix in only as much soy or rice milk as needed. You don’t want the dough too sticky.

I especially love serving these tender biscuits for breakfast with a little dairy free margarine and honey.

DAIRY, EGG AND NUT FREE DINNER BISCUITS

Yield: 8 biscuits

2 c. unbleached all-purpose flour (alternatively use 1 c. whole wheat flour, 1 c. all-purpose flour)

1 T. baking powder

1 tsp. granulated sugar

1/2 tsp. salt

3/4 c. or 1 c. soy or rice milk

2 T. dairy free margarine, melted for brushing

Preheat oven to 425 degrees and line a baking sheet with parchment paper. Set aside. In a medium bowl, combine the flour, baking powder, sugar and salt with a wire whisk. Add the soy or rice milk slowly, stirring with a rubber spatula until the dough just comes together and isn’t too sticky. Turn onto a light floured surface and knead 12-15 times, until the dough is soft and smooth.

Pat the dough into a circle about 1/2 inch thick. Use a 2-inch biscuit cutter to make 8 rounds, rerolling as necessary.

Brush the surface of each biscuit with melted dairy-free margarine, and bake for 15-20 minutes. or until very light golden brown.

 

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

 

 

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.