Evan Update

Evan Update

October, 2004

May, 2007

I wanted to include this section to my website to give hope to all of you parents out there that some food allergies really are outgrown by the children.

Evan was diagnosed with a life threatening allergy to dairy. This is unusual, as dairy allergies are not often that severe. The couple of times that Evan briefly touched something with dairy in it, it immediately created blisters. When his big brother (who also had allergies to dairy and wheat, but outgrew them by the time he was 3 years old) kissed him with lips tainted with dairy, it left blisters. This was a life-altering situation for us. We couldn't take a chance of any accidental ingestion. Life turned out to be very similar to a life with a child with a life threatening allergy to peanuts--only dairy protein seems to be in EVERYTHING! We had to cleanse our entire pantry and refrigerator of every single item that included a dairy protein and start anew. With complete supervision and the utmost diligence, Evan never ate anything with dairy in it. Until his RAST numbers drastically decreased the summer before he turned four years old and he had a food challenge. His numbers indicated that he outgrew the allergy--they were very low, but still present. We made it to eating 1/16 of a cup of yogurt in the food challenge at our doctor's office before he exploded into hives. But at least we know now that he won't die from eating one of those #*%$# Goldfish crackers that litter the American landscape.

Evan also underwent a food challenge for eggs that summer. And, happily, he ingested them with no problems. He doesn't like plain eggs though and he probably never will. (It was a great challenge actually to get him to eat eggs at his food challenge--I had to hide the eggs in applesauce, soy yogurt, in a homemade biscuit with honey, etc.)

But--our odyssey with food allergies was far from over. The next Autumn, Evan had a (thankfully) minor reaction to a minor exposure to tree nuts. He got a CRUMB of a chocolate chip walnut cookie in his mouth. I don't know if he swallowed or not--but he swelled up and turned bright red. So back to the allergist we went for more tests. He ended up with a "mid-range" RAST number for tree nuts and a 'low-range" RAST number for peanuts. We were told to treat it like it is life-threatening, as with that number a reaction is unpredictable. So we are still on the diligence mode. Note that we were initially tested for tree nuts and peanuts and they did not turn up in the skin test or RAST test--it came later. I was initially told to strictly avoid all nuts as well, because some kids will end up with an allergy to nuts. I guess we're part of that "lucky" group. But, because of our carefulness, Evan never had an anaphylactic reaction.

Evan is turning five years old next month. We are planning to have all of the tests next summer, in nine months, and then to decide how to tackle the school plan. Currently, he is in a fabulous preschool with a very experienced, knowledgeable teacher, in whom I completely trust.

We have made it through this challenging time with no major mistakes or events. I am confident we shall make it through the next phase as well. The unknown in an elementary school scares me, but I have to believe that it is possible. I love that child so much. He has been a bit over-supervised and is yearning to unfurl his wings. I shall have to let him fly at some point.

Fall/2005 Update: Evan underwent all of the allergy testing this past summer, including two food challenges and.....he OUTGREW his allergies to peanuts and tree nuts! I cannot believe our good fortune that Evan is among the small percentage of children who actually outgrow nut allergies. His dairy numbers are back up though, so we are still vigilant and anxious, especially since so many people don't take a dairy allergy seriously--they think (and insist) that he has a food intolerance and dairy is SO hard to avoid. Evan is off to Kindergarten so ready to have some independence. I am in a good place: he is young, but responsible and all of the training and planning are in place and I have to believe that if there is an accidental exposure, all of the wheels will work correctly and my little boy will be safe. I hope that you will have this good news someday as well! Good luck. --Theresa

Fall/2006: We made it through Kindergarten with no mishaps and happy times. Evan had a fabulous teacher who did not believe in snacks in class, so I only had to worry about the lunchroom. The school district in which we live adopted a “no food” policy, meaning that all classrooms should NOT allow baked goods brought in for birthdays. This new policy was enacted to address obesity in children, discrepancies in socioeconomic levels, AND food allergies. It doesn’t mean that all snacks are avoided: holidays bring in the baked goods as well as the dreaded daily SNACK that seems so essential. But it is a start and very welcome to us parents that have children who cannot indulge in cupcakes for every single birthday (like my older son did during Kindergarten—he must have had celebratory cupcakes about thirty times!).

The bussing situation is a bit hairy—the bus garage cannot keep epi-pens due to variant weather conditions (they would be exposed to extreme temperatures). And buses are too often switched around for field trips, leading to misplaced epi-pens. But—Evan loves riding the bus and deems it necessary for his survival, so we allow him to ride it—chaperoned by his big brother on the way to school and a trusted friend on the way home. The school sends out a letter reminding parents to discuss the “no food on the bus” rule and we notify the principle every single time either of my children witness food being eaten on the bus, AND I talk everyday with Evan about never eating on the bus and staying safe.

This First Grade year has begun with some issues. Our school clustered all of the epi-pen kids together in classrooms. Even though I thoroughly discussed Evan’s allergy with the teacher, a note went home discussing the peanut allergies in the classroom and please bring healthy snacks and it listed string cheese as the number one alternative. The teacher also passed out cheese crackers to those children who did not bring a snack, until I had a very determined, assertive discussion with her. She has agreed to place all messy dairy snack eaters at one table and I brought in baby wipes for those children to use and to wipe down the table. Am I happy about this? No—it has caused me (and Evan) anxiety. But we live in a dairy world, we cannot ask for dairy free snack rooms in this culture. I stated to the teacher my understanding of this, but please do not encourage dairy snacks in this classroom. There was some sort of mumble about the nurse told her the likelihood is slim of a cheese cracker causing a reaction—BUT the bottom line is that those cheese crackers, handed out by his teacher, caused him anxiety. I do get exhausted by the energy required to remain positive and upbeat, constantly explaining the details about Evan’s dairy allergy. But, of course, it is worth it. I remind myself that I am an educator about food allergies and my efforts will pay off in smoother roads for future parents.

I am on a crusade to bring attention to the obsession on snacks in this culture. I hope to bring attention that it is of no coincidence that children face obesity in this day and age wherein snacks are offered after every single swimming lesson, sport practice, and classroom morning. We didn’t eat snacks at school and after practice—and we weren’t chunky! That came later at college when we realized we were free to snack anytime we desired, which meant all day, everyday! Hmmmm…what a coincidence. Take care! -Theresa

**Okay, my friends--here is a reward for reading this page to the very end. HOPE: Evan just outgrew his life threatening food allergy to dairy. We had an accident a year ago (my husband won Super Bowl XL tickets for our beloved Seahawks and so we had a long weekend full of excitement and little sleep. I proudly made dinner that first night home and then plopped a glass of dairy milk in front of Evan. He brought it to his lips, but didn't drink any...and his lips swelled up and he turned bright red. Benedryl did a good job. We didn't need the epi-pen and I watched over him all that night.) and so our hope was quite dim that he would ever grow out of his dairy allergy since he was past seven years old. We did the yearly testing and his skin test came back negative! The blood test showed the same dairy "number," yet his overall IgE number came down. So we scheduled a dairy contamination food challenge. I didn't have much hope. BUT--Evan did fine with the dairy and so we just kept going until it was determined that he officially outgrew his dairy allergy at seven and a half years of age! I am stunned as I am able to just walk away....I still do not cook using any dairy though--not yet. (May, 2007)

Evan's "FIRST DAIRY CANDY" taste!