Julia's Guardian Angel Fund

Wednesday, June 30, 2010

Living with food allergies

I would be kidding if I said it wasn't a big deal to live with food allergies. We have, between 6 of us in our house, 11 major food allergies. Thankfully wheat isn't one of those, nor is corn. When my step dad comes to visit, we add those on top of our allergy list. However, you learn to cope. You have to. We all have to eat so it just becomes an exercise of trying to make it work.

We don't do fancy food here at our house. Most dinners, sit down - all of us together, usually consist of 1 meat, 2 veggies, 1 starch, 1 fruit. The starch is usually an artisan bread. The meat is usually, not always, free of sauce. We grill a lot, Spring through Fall.  We stay away from processed meats except for the occasional hot dog (Kosher, usually) and Johnsonville Brat (what can I say, we're German/Irish).

One thing I've noticed lately is that I have been having nightmares about the peanut allergy in our house.  I keep dreaming we are on a boat (inaccessible to a hospital) and other people on the boat have peanut addictions.  We had chosen the boat ride because we were assured it would be "peanut free" and here are all these people, typically girls the same age as my peanut allergic daughter, sneaking around eating peanuts.  Can someone explain this to me?  I have to go around on this boat and throw the peanuts overboard, then go wash my hands. 

Food allergies are on my mind lately because they have been affecting more of my life than normal.  Usually I'm a stay-at-home kind of gal.  But the Summer has us doing things we don't normally do, like going to VBS and the pool.  It is just control issues for me, I'm sure.  The other thing in my mind is that our pediatrician is asking me to consider having our 5th child go wheat free for a while.  He's a tiny guy.  What's worse is he's fallen from the 15th percentile for height to the 2nd percentile.  If he hadn't moved up by August, we have to consider tests, one of which would be an endoscopy with a biopsy to determine if he has Celiac's Disease, which could affect his growth. 

Please say a pray that he grows.  My nightmares will change in nature if that happens.  You see, I am allergic to rice.  If he needs to go wheat free, things change, even more for the worse here.  I will have to make all his food separately from mine.  I've actually been thankful to have an egg-free buddy as we both have egg allergies.  But now, this would make life just a little more difficult. 

I've heard it said that having a child with food allergies is like having a really bad neighbor you can't trust.  You have to keep your eye on your children at all times and can't let them go outside alone.  Food allergies affect them, too.  They feel left out and get tired of making sacrifices.  We don't eat out much, but when we do, I worry.  A lot.  They also think that we don't get invited to peoples' homes because they are worried they will contaminate us.  I worry a little about that too, both that we don't get invited for that reason and that they will, indeed, contaminate us.  So what do we do?  We have to have faith.  We have to be diligent and we have to be strong.

While I don't like that my kids might be left out because of their food allergies, I know in the long run learning to make sacrifices is an important lesson. I also know that education is the most important aspect of food allergies.  Kids need to know what they can and cannot have.  Adults need to know how to read labels and know what the allergic child needs to avoid.  People need to know we have means to mitigate an allergic reaction and what to look for and when to administer meds.

If you are reading this and you wonder what you can do?  Have a bottle of liquid Bendadryl in your house at all times.  That is the best and easiest way to make sure you can help if there is ever a food allergy at your house.

4 comments:

  1. This is a really good post. We keep Benadryl tablets in our first-aid kit for hiking and camping, but I am going to add Benadryl liquid to our medicine cabinet today. Thanks for the reminder, it didn't occur to me that even though we don't have food allergies, we should have OTC first aid for anaphylaxis in our house anyway.

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  2. How apropos! I hang up the phone (having called you for advice) and see this post!

    Thank you for sharing your wisdom & experience, and thank you for being a friend in need to this friend with an itchy boy.

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  3. I found you through Margaret -- your post title caught my eye in her sidebar because we, too, have life-threatening allergies. I learned when my now-almost-14-year-old was two years old. He has peanut and tree nut allergies (and asthma and eczema), which is, really very manageable compared to your family's many allergies.

    I carry with me, at all times, an epi-pen and, like you, am vigilant about food labels. I recommend The Parent's Guide to Food Allergies if you don't already own it. I am lucky that our extended family understands (with a few exceptions) the danger and my son's best friend has the same allergies (he was sent by God I'm sure!) and I homeschool so we don't have the risks that school brings (yet).

    There are many sacrifices and my son is just now getting to the age where he accepts them without feeling badly (there are valid pscho-social issues related to always be excluded!). He worries a lot though and sometimes will just not eat if he is not 100% sure his meal is safe (when we are visiting somewhere). I am hoping that his fear will save his life some day. It is scary and you are right to be worried (your dreams). Find sympathetic folks -- like Margaret ;-) -- to lean on.

    Prayers for your little guy.

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  4. scmom (Barbara) - The Parent's Guide to Food Allergies was my bible the first couple of years after my daughter's first allergic attack. For those of you with food allergies, it is a must read, if not a must have. Thank you for the reminder about that book!

    I'm so thankful that the friends in my immediate circle all work hard to accommodate my kids' allergies, when possible. I know it's hard and they really put forth the effort (and always have!)

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