It takes an extended family to raise a child with allergies

For me, the learning curve around my daughter’s allergies went through several stages: shock (I can’t believe she’s allergic to all of these foods and environmental factors), guilt (what did I do when I was pregnant with her that I should have done differently), knowledge seeking  (how can I learn everything there is to know about this), knowledge sharing (how can I best educate my extended family and closest friends so that I can broaden her world safely) to acceptance (we’re in this together and we can handle it). As I moved through this learning curve, I have been able to extend and broaden my daughter’s world. When we first learned about our daughter’s allergies, we felt all alone – we didn’t know where to turn, we didn’t know anyone who knew how to help us and we knew nothing! We spent the first months / years learning as much as we could – we attended local allergy meetings, met numerous doctors, read a lot and talked to anyone we could.  Eventually, we reached a place where we realized we knew more about dealing with allergies than many people we met and we could help others help themselves if they’re dealing with similar issues and we could help our families help us!

Until we reached the stage that I call knowledge sharing, we would sometimes become frustrated with our family – why did they buy that dessert with nuts in it? why are there eggs on the counter? why did they plan a family dinner menu with peas in it? We knew they knew about Morgan’s allergies and we knew they cared, but initially we didn’t understand why they would offer foods that were dangerous for Morgan. Then, we finally realized that just as we were once ignorant about dealing with allergies, they were as well. We had been focused on educating ourselves but we had failed to educate them along the way.  That’s when we entered the Knowledge Sharing stage — we now knew enough to help them help us.

Today it is a very different situation. Our extended family has been wonderful making their worlds not only safe for Morgan but also very inviting. Never do we go to a family member’s home and encounter foods to which Morgan could have an anaphylactic reaction.  Rarely do we even go to their homes for dinner and find something served that she can’t eat.  And on the occassion when something isn’t right, we simply let them know because we have accepted Morgan’s allergies and we know that as hard as it is for us to monitor food and their ever changing ingredients and labels, it’s even harder for our family members who aren’t grocery shopping every week for a child with allergies. We know we are very lucky – Morgan’s Grandmom Norine, Grandad Bud, Pa Wayne, Nana Shirley, Aunt Cam, Uncle Chuck, Aunt Margaret, Uncle Matt, Nana Laurie and Grandma Barb are the best at ensuring Morgan is safe and that she never feels excluded from any family gathering due to food — they have helped extend and broaden Morgan’s world.

Tip: Broaden the World for your Child with Allergies by Extending the “Safe Zone” to those Closest to You:

When you have a child with severe allergies, the world can seem scary and your primary objective is to ensure that  your child’s world is safe. To do that, we sometimes insulate our child and make her/his world small so it feels manageable. But this can be very limiting for your child. To broaden your child’s world, it’s easiest to first extend the “safe zone” with those people closest to us. To do that, I believe it’s important that you follow the 3 R’s: 1) you constantly reinforce the importance of keeping the environment safe, 2) you remind them of the allergies and the symptoms and 3) you remember that it’s your own responsibility to educate them & share your knowledge – as a parent with a child with allergies you will always know more than anyone else about your child’s allergies. By broadening this world, not only is the world richer for your child but you are can also breathe easier knowing that there are now more people in the world who can safely take care of your child when you can’t be there.

Welcome to my blog on dealing with a child with allergies

I am the mother of a five year wonderful girl named Morgan who has numerous food and environmental allergies. She is anaphylactic to eggs, nuts, peanuts and peas; her other food allergies include all dairy, soy, sesame, oats. In addition, she is allergic to almost all animals, dust, mold, latex, grass, most trees and the list goes on.  Morgan also has severe eczema which is a reaction to allergens. So far, she does not have asthma.

When we first discovered Morgan’s allergies, we didn’t even know where to go to begin learning about how to deal with them — physically and emotionally. Today, several years later, we know a lot more, but honestly we continue to learn all the time. I am starting this blog to create a space where I can share things I’ve learned as well as things I’ve felt dealing with a child with severe allergies and I hope others will share back. It’s amazing how much we as parents of children of allergies can learn from one another.

To start the first issue, I thought I would share a life altering moment for me. Back in November 2005, Morgan was in a bad spot physically. We thought we were managing her allergies well; we thought we were managing her eczema well. We had Morgan with great doctors –allergists, dermatologists, pediatricians, etc. But we couldn’t keep up – her skin was a mess, she (at the age of 4) still hadn’t slept through the night even 2 nights in a row, she was always uncomfortable and itchy. That November I asked Morgan what she wanted for Christmas. She said “Mommy all I want for Christmas is new skin.” I cried and my husband and I knew at that point, there must be more we can do for her.

 I am happy to say that Morgan is in a much better spot now. At 5 1/2 years of age, she sleeps through the night most nights, her skin is supple, she is able to focus on discovering the world and learning, rather than only focusing on how she feels. She is happy and hasn’t once even thought to ask for new skin.

So what changed? Many things in fact, including new doctors, new medications, new diet, changes in the home environment, changes in behavior and changes in our mindset. If you’re reading this and you have a child who suffers from severe allergies and eczema, I hope you know now that there are ways, often one small step at a time, to improve the life of your child.

TIP FOR THE DAY:

In each blog, I hope to also offer a tip that I’ve learned. We actually travel nationally as well as internationally with our children. Traveling with children with allergies can be very scary… will the airline serve peanuts even though they know a child who is anaphylactic to peanuts is on board? can I trust the food in other countries to be as well labeled as those in the States? can I bring all of my own food with me? How can I bring my child’s allergy medications on the plane? How can I make my child safe on the plane?

When we travel with Morgan, I travel with the following items: all of her medications in plastic see-through bags of course, a doctor’s note listing all of the medications, another set of her medications with a copy of the doctor’s note in the checked luggage, antibacterials wipes, crib sheets, rice milk (which is also listed on the doctor’s note) and all of her snacks. Always notify the airline that your child has a severe allergy to nuts. Some airlines will let you pre-board to wipe down your seating area. I put a crib sheet on the seat where my daughter will sit and the seat next to hers. My daughter always sits in the seat (with a crib sheet on it) next to the window, after I have wiped down the window, the tray (both sides), the arms of the chairs, the seat if it’s leather, the seat back in front of her (if it’s leather) and the seat belt.

Kathie Johnson 

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