As a parent of a child with food allergies, I’m grateful that doctors and scientists are holding research trials with the hopes to find a cure or lessen the life-threatening nature of food allergies. It seems every few months a new food allergy study is published to share the results of the latest trial either in the US or over seas. I follow the news and read the articles, I talk about them with other food allergy parents. I wonder what it means for my daughter and her future.
Some of these trials get more attention than others. A study from the U.K. was published this week by news outlets around the world. Honestly I was surprised how much attention it received, given similar studies in the US, using peanut flour to desensitize people, had not proven effective over long periods of time.
This particular study showed promising results in that after completing the trial, patients could consume up to 5 peanuts without suffering a severe reaction. The goal of these doctors is to help these children so that if they accidentally ingest a peanut or food with small amount of peanuts that they won’t die. It is not meant to CURE the allergy and it doesn’t mean they can start eating Snickers candy bars.
A few of my friends and I had been watching the headlines roll in, some of them misleading talking about a cure. We shook our heads and moved on… but when my friend Jenny at Multiple Food Allergy Help shared a picture of Time Magazine’s tweet on her Facebook page, I got angry.
Not only the tweet used this language, but when I clicked on the link, I saw the article did as well. Quite a few comments on the web page complained about the misleading headline.
Lately I’ve been watching episodes of Long Island Medium on Netflix. If you’ve never seen the show, a psychic medium named Theresa Caputo performs readings for people to help deliver messages from loved ones who have passed. Theresa has a big personality, big hair and a thick New York accent (at least compared to the folks here in Minnesota!). I love watching her give readings and I’m always, without fail, in tears by the end of the show as she helps people find peace about the death of their loved one.
And it’s made me think more about my grandparents who have died. Three people I loved dearly – my great grandmother, my grandma and my grandfather. If what we see on Long Island Medium (and what many others believe) is true, then these relatives of mine could still be hanging around, watching over us, celebrating special occasions with us and sometimes even intervening to protect us.
Many children with food allergies begin self-carrying emergency medicine when they begin school. My daughter carries 2 doses of epinephrine, antihistamine and a copy of her Allergy Action Plan from her doctor. Some children also carry inhalers if they have asthma.
There are many types of cases and carriers to choose from. Some prefer to wear carriers under their clothes (under their shirt or on a leg belt). Others carry traditional fanny packs or smaller compartment belts that go around the waist. There are also carriers that clip onto a belt loop and others that look like a small purse to carry with straps across the chest.
Here are a few of the belts we’ve tried for my six year old daughter:
Traveling can be challenging with kids. It can be SUPER challenging when you are managing food allergies with children. The getting there part and the eating part. So far our trips have been fairly close to home (no airplane rides). I always need to be thinking ahead and planning:
1) How close is the nearest hospital and is that good enough?
2) Do I have enough emergency medication (multiple doses of epinepherine and Benedryl)? Is it expired?
3) How will we prepare, store and heat food that is safe for my child?
4) How can I stay positive and not let my child’s food allergies become the focus of our vacation?
My typical plan of action
Our best experiences thus far have been to stay in either a condo/cabin with a full kitchen or a hotel with 1-2 mini-fridge(s) + a microwave in it. I’ve actually requested an extra mini-fridge before to have enough room for the food. I make food from home and bring it along if we’ll only be away 2-3 days. For extended trips, I prefer a room/condo with full kitchen so I can prepare fresh food for all of the meals. I usually bring specialty foods from home that I may not be able to find in the stores (like our favorite allergy-friendly treats) and then stop at a grocery store at our destination and stock up on fresh fruits, veggies and meat.
I don’t write for this blog as much as I used to or as much as I want to… but I do write blog posts in my mind. I can even take pictures with my mind, too… There are times, when I’m just going along my day and I find myself writing headlines… or photo captions for blog posts I’m creating entirely in my mind. Poignant prose. It’s a shame they don’t automatically publish to my blog.
After writing this blog for so many years, thinking like a writer comes naturally to me. Whether I want to or not. There was a time I had more free time to write and this blog was my creative outlet. Now my free time is much more scarce and I’m creative all the time, so I no longer feel the need to fill a void on a regular basis. Instead, this blog simply exists to give me a space… a virtual place… to write when I’m motivated and when the urge to write is too strong to live solely in my head.