I have been a bit busy this last week focusing my efforts in a new direction by working on establishing a local food allergy support group and I am so excited that we really have come far in just a weeks time!
I was connected to a friend of a friend and she is happily going to start the group with me, her name is Denise and she’s got a little girl that just melts your heart. Her little girl suffers from food allergies and FPIES and we connected immediately, it was amazing how much I learned from her after only sitting and talking for a few hours. Last week I talked about five facts about food allergies I didn’t know before becoming a food allergy Mom, and each week I keep learning more and more.
We’ve been following along with many of the suggestions on the calendar and today is anaphylaxis awareness day.
Anaphylaxis is a life-threatening type of allergic reaction and without getting too clinical on you, it is an acute allergic reaction to an antigen (e.g., a bee sting) to which the body has become hypersensitive.
I have experienced anaphylaxis first hand with my daughter who went into anaphylaxis at just 11 months old due to eating a small piece of kiwi. Thankfully we were prepared with epinephrine (adrenaline) which is a medication that can reverse the severe symptoms of anaphylaxis. Many people know this to be an EpiPen (although other versions do exist) and it is given as a “shot” to the affected individual if they are having a reaction.
My husband and I had to administer epinephrine to our daughter after just about 5 minutes of her ingestion of the kiwi. It was truly the scariest moments of our lives. Just shortly after ingesting the kiwi she broke out in hives, her face swelled and she was having trouble breathing. Shortly after administering the epinephrine she vomited and within about another 4 minutes some of her symptoms reversed and she was able to breathe normally again.
After any administration of epinephrine you must go to the ER to be seen and monitored, and we spent the remainder of that day in the hospital with our daughter, who was discharged in the evening still exhibiting hives and swelling but all-in-all was healthy after her experience.
We replay that day over and day and have been told that we did everything we were supposed to do after the reaction. At present, strict avoidance of problem foods is the only way to prevent anaphylaxis, although researchers are working on preventive therapies.
For us this means a lot of vigilance – label reading, asking a lot of questions when eating away from home, always carrying an EpiPen wherever we go (actually always carrying two in case one malfunctions,) and learning and educating ourselves more and more about food allergies, which is another reason I am working so hard on getting our local support group started.
We’re all in this together and the group will be a great resource to learn from other families and get the support I’ve been struggling to find locally. The thing about food allergies and other diseases or illnesses is that each of us didn’t make a choice to have food allergies or be a food allergy parent. These were the cards we were dealt and it feels great to meet someone local that also is going through what I am on a daily basis. I often feel like people look at me like I made the choice to become a “helicopter parent”
If you know of anyone else living with food allergies on a daily basis and living in the Montgomery or Bucks County PA area please have them contact me, we’d love for them to join us! We both cannot wait to get the group started and established and meet more local families.