Tuesday, March 16, 2010

Allergic Reaction Anxiety

More than 12 million adults and children suffer from a food allergy.  Many are life-threatening, meaning that if they ingest, or in some cases are just exposed to a certain food, their body goes into extreme defense mode.  It causes their blood pressure to drop leaving the brain starving for oxygen and inflammation in the lungs to occur causing severe shortness of breath.  These people, including my daughter, have to consider every food they eat.  Everywhere they go, they bravely carry an epinephrine device with the understanding that at some point in time, a needle might be jabbed in their thigh.  They have parents and loved-ones that are super vigilant, sometimes to the point they feel suffocated and crippled.  In some circumstances, they're isolated and even blamed for causing inconveniences for others.  They've been told that they're blowing their allergy out of proportion and even labeled "disabled" by the Americans with Disabilities Act.

Many food allergy sufferers take their life-threatening allergy in stride, controlling it rather than letting it control them.  Abigail, at 7 and having not experienced a severe reaction, is mostly just upset that she can't eat the foods she wants.  As her parent, though, I've worked extremely hard to make it that way...to give her the right level of "anxiety".  Her dad and I read the labels although she knows how and when to question.  We carry her Epi-Pen, but she for the most part, confirms that we have it.  We discuss all the details of her allergy with her care-givers and create a safe environment for her, but she'll also not hesitate to ask if she's uncertain. She's not ostracized at school because she's matter of fact about her allergy.  She doesn't have to eat by herself but she does make sure that none of her lunch buddies are eating anything with peanuts.  She's not denied special treats on special occasions because there's always a yummy alternative (thanks to me).  And, thanks to the Duke Clinical Trial, we also are blessed to be able to give her something else...a light at the end of the tunnel, the possibility that in several years (just in time for those independent teenage years), she can eat what she wants without the fear of a severe allergic reaction.

But, what about those children that have actually suffered a life-threatening reaction requiring epinephrine and come away emotionally scarred?  Or, are the only child in their school that suffers from a severe food allergy and are feeling isolated?  What about those that are blamed by other kids for not being able to bring a peanut butter and jelly sandwich for lunch?  Even worse, what about being told that it's all in your head...that your allergy can't be as serious as it's made out to be? Regardless of whether you can take it in stride or not, the bottom line is, these kids live with a fear of dying on a daily basis.  Abigail may be well-adjusted (with her allergy) now, but what if circumstances change?

According to a study conducted at the University of Southampton, the quality of life suffers for these children.  The study suggests that "children with peanut allergy have a worse quality of life than those living with insulin-dependent diabetes."  They found that the children with peanut allergies felt more threatened by potential hazards within their environment, felt more restricted by their allergy regarding physical activities, and more worried about being away from home. In contrast, the children with diabetes were more upset about their “restricted” diet, and none mentioned a fear of dying.

That's just the children.  Being a parent of a child with a life-threatening allergy is no walk in the park either.  And, we have the added burden of not projecting our fears onto our children.  There's a good article on the Kids with Food Allergies website.  Titled "Raising a well-adjusted child who happens to have a food allergy", it gives several steps to do just that.  A few include, never let them see you sweat, make your home a safe haven, don't let food allergies define your child and don't make your life revolve around food.

As mentioned in my last post, Abigail has had bouts of anxiety over the last year.  It typically shows up at night around bedtime and manifests itself as a belly ache.  When I ask if it's related to her allergy or participating in the clinical trial, her answer is always an adamant "no".  It could be her age.  It could be school although she does well. I've been doing some research and there is a link between having anxiety as a result of consuming a food that one is allergic too.  That's the next topic.


jenny said...

great post! My daughter is 4, so for now, the anxiety and the pressure/burden is on me. Yes, it has been the worst burden I ever have to take on, and I do not get much support (yes, exactly the way you mentioned, people think it's all in your head!) I often wonder, general public has certain amount of sympathy towards people with physical disability and illness like cancers, diabetics..etc, but when it comes to food allergies, no. Do people love their food so much that they get offensive when limitations are set? Lots to think about!

Mom with a Mission said...

Thanks Jenny. Yes, I do believe people love their food. Not just to the point that they don't want to be inconvenienced, but also to the point that they no longer care how it's made or what it's made with.

No sure if you've left a comment before or not. If not, welcome!