Ever since I discovered that my son was having food reactions to food and medicines as a toddler, I was determined to learn all that I could about food allergies so that I could help him feel better and help other families who are trying to help their children feel better, too.
There have been so many challenges that we’ve had to overcome, and many that we continue to work through. Diagnosis has taken several years. Eventually, our doctor told us that our son very likely has FPIES (Food Protein Induced Enterocolitis Syndrome), a very rare form of food allergy where the digestive system reacts, and for which no test is available to detect it before reaction occurs. He reacts to wheat, diary, rice, oats, beans, peanuts, and soy. Eventually, you learn be strong, survive, and then thrive in spite of it. And that’s the key word: thrive.
For the past few years, my goal has been to help children with food allergies participate and be included in all the events and moments of life that make up the memory and experiences of what it is to be human: to have a meal together.
We all have memories of something special that a caregiver made for us, we remember having cake and ice cream with our friends at birthday parties, having pizza after a baseball game, and then those lovely dates with some sort of interesting delicious dinner and a movie. As our kids grow taller, stronger, smarter, and of course, grow up faster than we’d like, they’ll want to keep participating in all the food events of life.
While we wait and pray for a cure for food allergies, we’ll cure exclusion by making what we can have even better, and by achieving public compassion and peer support that will last a lifetime. With this book, peer support is the goal. Fellow classmates are often the best support system a kid can have. This book encourages the development of that support system by teaching kids how to help and understand their classmates who have food allergies. Kids with allergies can share this book with friends and caregivers. It is even a great reference to have on hand in every kitchen!
I am deeply grateful to Bruce Larkin with Wilbooks for believing in this mission and for providing the first opportunity to do more than I could do by myself. I am so appreciative of Angie Scherffel for her constant friendship and dedication – who has been integral to making this happen and for which I am proud to call VP, Board of Directors as we move toward establishing Safe Eats as a nonprofit. I’m ever grateful to friends and family who are constantly encouraging me to write and who are always helping us during our toughest moments. Mama A and Papa, my Aunts, Uncles, and Grandmas, Danny’s Family, and my Mom and Dad – they perhaps taught me the meaning of home meals and memories more than anyone else. Kathy and Kristy – two beloved souls that deserve nothing less than a lifetime of our thanks and payback. And, of course, the two loves of my life: my fiance’, Dan Sanders, who has stepped up to the role of being the love of my life and possibly the most loving, generous, and involved father a little boy could ever hope for.
And my son, who I would never have imagined could turn my life so completely sideways in the most crazy and good way imaginable, inspiring everything I’m doing, who tells me nearly every day “I love you so much that there is no number in the universe that could say how much I love you.” I am so very proud of him. He has been so strong through all of the symptoms and trials. He makes us stronger. He is somehow able to forget all he’s been through with a big happy grin on his face that makes the hearts of tough men melt. ❤
Loving support of book orders will be personally signed by the author and proceeds will go toward education and helping other families with food allergies THRIVE. 🙂
Milk or Bleach? To his body, there isn’t a difference.
Milk or Bleach? To his body, there isn’t a difference. We need a fundamental shift in public attitude to protect our kids and find a cure for food allergies.
As of this writing, August 2013, the consensus is that an average of 2 kids per each classroom in the nation suffers one or multiple food allergies (See: http://www.cdc.gov/nchs/data/databriefs/db10.htm) It is also considered to be a genetic inheritance. Also consider that when something is “on the rise,” it is because we have become better at diagnosing it. Years ago, someone might have said “milk doesn’t sit well with me” and they’d just avoid it. Today, people say “I have a confirmed milk allergy and must avoid it.” So, part of the increasing numbers is due to a more frequent diagnosis.
HOWEVER, what is new, and increasing, is the severity and toxicity of food allergy reactions. Not long ago, it was unheard of to hear of someone dying from ingesting commonly safe food. In the case of my own family history, my Dad had a hard time digesting something, although he doesn’t really know what it was. He said he felt nauseated every day from about age 5 to age 9 and then outgrew it. We will never know what caused his nausea and occasional vomiting, though I’m told he drank milk in abundance. It was also unpasteurized raw milk from the family farm. My maternal Aunt is also mildly lactose intolerant. I ended up with a similar bout of nausea as a kid as my Dad did, but it was off and on. At age 21, my morning cereal was causing me to have heartburn so bad that I could not function. As I told my doctor, “if there were such a thing as digesting razor blades, this would be what it feels like.” So, I was diagnosed with lactose intolerance but still can digest yogurt and cheese. My child had formula and I put him on regular milk as a toddler and he was fine with the exception of severe eczema that I just could not control. His pediatrician told me he would outgrow it, and he did, about the time he started complaining of belly aches at about age 5. It took a while to figure out that he had become allergic to dairy, as well as developing a severe gluten intolerance. He absolutely cannot have a drop of anything dairy or gluten without projectile vomiting for 8 hours straight and suffering severe intestinal damage that takes months to repair.
How did this get to be so severe? I let him play in dirt. I wasn’t super-sanitary. How did this happen?
I am not a scientist, and I only know what the average person knows about genetics, but now I want to learn everything there is to know about it. So much so, that I want to become a dietitian and then go to medical school with a focus on food allergy research. I need to know so much more. I wonder if the food allergy gene is going to be dominant like the brown eyes gene. I wonder if there is a gene therapy that could cure this. I wonder if it is true that food allergies are more prevalent in colder metro areas, and if so, why?
What is clear to me is the fact that we evolve and that we pass things down. So, right now, 1 in 13 children have a food allergy. What does that mean for the next generation? We can only speculate as to what will happen.
What if the children now end up having children with allergies that increase the list from “the 8 common allergens” to “20 common allergens” that cause a severe reaction? And of the 8 common allergens (milk, eggs, peanuts, tree nuts, soy, wheat, fish and shellfish) that are harsh/severe in this generation, what of those will become the next life-threateningly sensitive allergen like the peanut allergen is today? Will my grandchildren die if they accidentally ingest milk powder in something that an adult thought “a little will be okay”?
Will we die off way before the supernova because humans become increasingly allergic to the very substance that their body is composed of? Does it sound far-fetched? Maybe, but I’m sure that dying from ingesting peanuts also sounded far-fetched to our great-grandparents.
We can’t deny that it is getting worse. We need a cure now like we needed one for polio.
As for the medical research, there is still a long way to go. So far, they have only been partially successful with exposure therapy and it doesn’t always work. And the children right now are the guinea pigs. As I write this, there are children sitting on doctors’ office beds getting drops of their allergen and waiting to react so that scientists can learn from them. Those children are BRAVE! They really ARE a legacy for the future and don’t even know it.
Tell an adult to sit on a doctors’ office bed and take a few drops of Ipecac each day to try to build a tolerance or immunity to it. I know that, personally, I’d be seriously loathe to do it. I don’t like feeling bad on purpose so that someone can use me as research.
Any advances we make in food allergies now are because of these kids. I like to call them little soldiers, courageously being walked into a medical research office by the hand of their parent, taking proverbial food bullets to help save the next generation. Amazing.
In my opinion, using a child as a test subject is already a serious ethical and moral issue. And if food allergies continue to become more and more severe in the generations to come, it will be criminal to test children. Give the child a drop of milk and have an epi-pen ready? What if the epi-pen doesn’t work and he/she dies? Just last week, if you haven’t already seen the news article, died last week after three epi-pen doses. See: http://www.cnn.com/2013/07/31/health/california-peanut-allergy-death/index.html?iref=allsearch I am so sad for her parents and cannot imagine the grief they are suffering. My heart goes out to them. I can only hope her life can be honored with a public attitude that aims to take the issue of food allergies more seriously than they do now.
Everyone on this planet needs to start taking this more seriously, not just the ones who suffer. This is why we get upset when previous generations dismiss a food allergy as paranoia culture of my generation. We need to help them understand that we are not trying to be a pain, we are protecting lives. Yes, previous generations outgrew their food intolerances, and yes, those of us in the X Generation outgrew some of it too, but not easily. But now our children are dealing with a level of it for which the world isn’t prepared.
The super bug is something we all worry about, and rightly so, but the food allergy pandemic – the kind that kills, the kind that no epi-pen treatment will cure – could become a reality.
The best way to address this issue right now has to start with a change in public attitude. Everyone needs to know about the new severity and toxicity of food allergies, not just the people who are dealing with it. Teachers, care providers, family and friends all need to know how and why this can’t be taken lightly anymore. Our culture needs to stop dismissing people with food allergies. Even doctors need to start suspecting food allergies more in their diagnostic process when a patient isn’t responding to standard therapies. There has to be an overall acceptance that this is a real problem.
Beyond a fundamental change in public attitude, friends and family can read more information so that they can enter into conversations about food allergies with intelligence instead of an arsenal of myths about it. A great place to go for this information an organization called FARE (Food Allergy Research & Education) at http://www.foodallergy.org. They have articles and webinars that even address the issues of food allergy bullying, a thing that kids do when they sneak an allergen into their allergic classmate’s meal to see what will happen.
I am looking forward to a time when understanding and compassion become more common than skepticism and dismissive attitudes. It is among the most important steps right now to keeping our kids safe.
The good news is that it’s finally being taken seriously by our lawmakers. Yesterday, the FDA mandated that products will have to be tested as being no more than 20 ppm to be claimed as gluten-free. This means that an establishment won’t be able to say a product is gluten-free without being diligent about cross-contamination. More work needs to be done, but it’s good to see that a more helpful and compassionate attitude is going to be required. http://www.usatoday.com/story/news/nation/2013/08/02/fda-gluten-free-labeling-rules/2610841/
Safe Eats 