I’ve been looking for an amazing guest blogger that could tell the story of living with children suffering from celiac disease and/or other allergies and I found Jen Lane! Her story amazed me and I thought it needed to be shared for everyone to hear. While I do not have children yet, I do realize the difficulties that a family must face! I have a hard enough time with just myself.
Anyway, I’ll let Jen tell you her story….
Mandie was diagnosed with her dairy allergy at 6 weeks old, by our family doctor and IBCLC. She’d had the symptoms since birth, however. By age 1 she was also allergic to shellfish and mollusks, and was diagnosed with Reactive Airway Disease. Age two saw the inclusion of strawberries, grass, lanolin, wool, adhesives, cats, dogs, cottonwood trees, and several weeds and trees. Age three saw the addition of severe allergies to palm and coconut (in all forms), chamomile, ragweed, sunflower, safflower, wheat, and her celiac diagnosis. She outgrew her strawberry allergy. At age 4 she added honey, almonds, sesame, latex, lidocaine, all molds, dustmites, candida, & more weeds. At age 5 (this past July) she added a severe corn allergy, as well as chocolate, gluten free oats, olive, mustard, banana, grain dust, dandelions, even more molds and candida. Due to the genetic nature of the disease, Mandie and her brothers are Malignant Hyperthermia Susceptible, which is an allergy to general anesthesia.
Living with allergies since her birth, Mandie has grown up knowing that she cannot eat what everyone else eats. As a toddler we’d just tell her that she was allergic to milk and it would make her sick, but I was nursing her and we brought our own food everywhere, so it was not an issue. As she got older and added allergies, we have told her the same thing, but with more detail. Most of the allergies were discovered via reaction, and even at age 3 she’d had enough severe reactions that she would tell us she never wanted to get sick from allergies again. At just over 5 1/2, Mandie can recite all of her allergies, explain what happens in an allergic reaction and tells people when and how to use the epi pens she carries around her waist. She knows that she has celiac disease, and that it means that she can not eat or touch anything containing gluten. She has been good at always asking adults (especially at church) to check package labels, often telling them what to look for. When she started school this fall, she sat in on the 504 meeting with her soon to be step-dad and I, and had many intelligent things to contribute.
Mandie is amazingly resilient as far as living with her allergies goes. She has an amazing attitude, and knows that I will always at least attempt to make whatever she is craving or missing safe for her. I think a huge part of this is the fact that I have always made sure to make our home a safe haven where she is free to eat without fear. She is also fairly matter of fact about living with allergies since she has done it since birth. I have bought lots of books for children with allergies that we read whenever she wants, as well as the Alexander the Elephant video from www.foodallergy.org
. Sometimes she gets very down and upset about having so many allergies and not being like other kids. I tell her that it is perfectly normal to get angry, or cry, or feel sad about her allergies and that I understand. I also tell her that maybe someday she will outgrow some of her allergies, but if not she is very healthy and will learn how to cook amazing things! Occasionally she gets upset at wearing her epi belt when she is wearing a dress, but she got a pretty purse that she can carry in those occasions (when I am with her).
My middle child, Hunter (7 1/2), was diagnosed with celiac disease 18 months after his sister. He was also diagnosed with dairy allergy at the same time. Growing up with his sister’s allergies, it was very easy to explain to him what it meant and what he had to avoid. At the time of diagnosis Hunter was so sick with what we at first assumed to be appendicitis that we had him in the emergency room, so he made his own decision not to eat any more gluten or dairy. Hunter carries epi pens for bee stings, diagnosed at age 2 after being stung twice, and is severely allergic to latex.
Hunter does not care what anyone thinks about his food at lunch, and is one of those kids who make eating different seem cool. He is very matter of fact about eating gluten and dairy free since he was so sick at diagnosis. Hunter is the child who tells everyone how much healthier his food is and how good it tastes, and has everyone wanting to taste some! He is also good about his bee sting allergy, and tells all of his friends about it so they help keep him safe. He is fantastic about wearing his epi pouch at all times, and makes sure they are up to date and that he has Benadryl and bandaids with him.
Truman is my oldest, turning 10 this month. As a toddler he had severe allergy to spider and mosquito bites, which would swell his eyes shut if he got bit anywhere from his shoulders up to the top of his head. He finally outgrew those allergies at age 5, but proved to be very sensitive to dairy, soy, and gluten – reacting with behavior issues, bed wetting, and a deep asthma-like cough when he ate dairy. Truman is also very very sensitive to sulfites, and is malignant hyperthermia susceptible like his siblings. Truman also has asthma.
Truman is often sensitive to what people at school think of his “different” lunches. His siblings and I keep telling him how much healthier he is, and he agrees that “Mom makes the best food!” Most of the time he agrees that at least his allergies aren’t nearly as bad as his sister’s, and that he has a bunch more freedom than she does.
As a parent, the allergies can be all consuming at times. My oldest son Truman (10 in Jan.) is intolerant to soy, gluten, and dairy. I am anaphylactic to dairy and chaomoile, likely celiac (never been tested, but my family doc and Mandie’s allergist say yes based on symptoms and two kids with the disease), allergic to soy & share many of Mandie’s other allergies. Because of our sensitivity, we must avoid all foods made in the same facility with dairy, gluten, & corn. The scope of Mandie’s allergies means we do not allow any gluten, dairy, shellfish, mollusks, chamomile, palm (including soaps) or soy products into our home, and only limited coconut, sunflower, safflower, olive oil, & corn. I used to keep our entire home free of Mandie’s allergens, but the list is so insanely long now that it is not feasible. The boys know to wash up after eating, or Mandie reminds them. She is not airborne or contact allergic to peanuts, almonds, honey, chocolate, banana, & oats, so the rest of us eat those with caution. We make sure all soaps in the house are Mandie-safe, as well as all cleaning products. I make dinners that are safe for all of us, though everyone else can use salad dressings or Daiya cheese, or almonds on our salads. Breakfast is usually cereal of some type – very few cold cereals are Mandie-safe, so she eats the ones that are, or I make her hot cereal using fruit, quinoa flakes, millet, cream of rice or cream of buckwheat. I make all of our bread to be Mandie-safe, and at lunch we all eat our favorite sandwiches (Mandie eats homemade cashew butter with homemade jellies and apple, pear, or pumpkin butter) and chips (Mandie’s are homemade). Mandie also loves to snack on toasted pumpkin seeds or chickpeas instead of chips.
Every single decision I make has to be filtered through our allergies. We don’t often take Mandie with us to stores, and anyplace we go we bring all of our own food, table coverings, safe wipes – plus each of our Epi bags with our epi pens, Benadryl, inhalers, latex-free bandaids, and lavender oil. I spend several hours each day researching how to make or buy safe soaps, cleaners, toothpaste, ketchup, mayonnaise, pickles, barbecue sauce, etc. At school, Mandie uses Avon’s Silicone Glove lotion whenever she is not in her classroom, sits at a special table at lunch, has her own snacks, lunch from home, and uses a placemat at lunch and snack time at school. All of her class washes hands upon entering the classroom, after bathroom breaks, snacks, and lunch. Every table is wiped down with Clorox wipes after lunches and snacks, and students have been taught not to touch her skin after lunch until they wash up. Even so, every day I pray that I won’t get a call of a severe reaction while she’s at school.
I am a member of numerous allergy groups on yahoo groups and facebook, and would like to start a local group in my town to bring other moms together. It is VERY important to have other moms to vent to, bounce ideas off of, cry with, and curse about the difficulties and stresses of this life we live. It is too overwhelming to think of the consequences of not doing what all I do keep us all safe.
Most of the time I am on a bit of an autopilot as we go through our routine, thinking about what needs to be done and why, but not really feeling it. When I do think about all of the details, such as writing it all down or talking to the allergist, or coping with a reaction, the severity hits home and I break down and cry with my fiancé, talk to friends, and think about how blessed we truly are as I have friends who face far worse challenges than we do. Through it all, I just pray every day that they will outgrow at least some of their allergies. This is also why I walk in the FAAN (now FARE) WALK for Food Allergies in Chicago each year. Connecting with other allergy parents and children, hearing the latest research, and raising money to help fund a cure is a very empowering way to deal with all of the myriad emotions that come with living this kind of life.