In honor of Food Allergy Awareness Week (May 13 - May 19), I am hosting a series called Living with Food Allergies: Our Story. My sponsor for this series is Olli Lolli: Allergy Aware Apparel for Kids. I am hosting a special giveaway sponsored by Olli Lolli too, stay tuned! :)
Our daughter Sophie is 5 years old, and has multiple severe food allergies. We first became aware of her food allergies when she experienced an allergic reaction to pine nuts. After that, she was tested and diagnosed with a severe allergy to tree nuts, among other foods (including melons, berries, flax and sesame).
Sophie's first food allergic reaction
Sophie was just about 13 months old and ingested a very small amount of pine nut and within minutes she broke out in large clusters of hives on her arms and began throwing up continuously.
In the ambulance ride to the hospital, I explained that we had just started seeing a pediatrician that specializes in food allergies, and that Sophie hasn't had her blood test for food allergies yet but I emphasized that I am certain she is experiencing a food allergic reaction.
I verbally gave a list of the foods that we believed her to be allergic to (we had no idea she was allergic to nuts). But the paramedic pointed out to me that Sophie has not been diagnosed with any food allergies, and my list of foods can only be considered "suspected foods."
Once we reached the hospital, we were told that they were ready to give her a chest x-ray. They did not believe she was having an allergic reaction, but rather they thought she was choking. This was mostly due, apparently, to her not having a history of food allergies.
Sophie's pediatrician was contacted, and she requested that Sophie be discharged and brought to her because the hospital was ignoring the clear signs of a food allergic reaction.
Before I continue I need to make something clear, if your child is experiencing a food allergic reaction you should seek medical attention immediately. Sophie's pediatrician specializes in food allergies, and was informed of her condition, vitals and symptoms. Her professional opinion was that Sophie could safely be transported to her office, because she was not having any breathing problems or loss of conciousness and her vitals were perfect.
Sophie's reaction did not require the use of epinephrine. Her symptoms were vomitting and hives, but it did not progress further.
It is unfortunately quite common for food allergies to be misdiagnosed in the emergency room. I was asked to participate in a survey panel on this very subject, in hopes of improving diagnosis and treatment.
We sat with her doctor for over an hour after Sophie's allergic reaction, letting it sink in and talking about what this means for us now. She explained that we need to carry EpiPen's because subsequent reactions can be worse than the first, especially given that her first reaction was to a nut. And the next step was to have her blood tested for food and environmental allergies.
Sophie tested positive for both IgG and IgE reactions to many different foods and other allergens such as dust, dust mites and grass.
Be an Adovcate for your Child
I believe that diagnosis counts in many ways... and in an extremely important way, because it can impact the care that you receive from paramedics and doctors in the emergency room.
But most importantly, you have to be the voice for your child, be their adovcate. You have to realize that the paramedics are there to help, but they do not know your child. They are unaware of your child's previous medical history or conditions. That's why you have to stay focused and be able to give them the information they need in order to help your child.
After Sophie's first food allergic reaction, my husband and I both took on the roles of being an adovcate for her. Sometimes that means disagreeing with a doctor. While I have extreme respect for paramedics, nurses and doctors - I am also a parent, and I know that the bottom line is: I know my child the best because I'm with her everyday.
The mistake that was made by the hopsital during Sophie's food allergic reaction was unfortunate, but not uncommon. Hopefully, sharing my story will help spread awareness and give parents courage to speak up in times when they know what is happening to their child, even if doctors are unable to see it.
Stayed tuned for part 2 of Living with Food Allergies: Our Story, where I will talk about how we navigate our daily life, activities and more.