Tuesday, September 23, 2014

The Diagnosis

What is food? When you think about food, what comes to mind? Your favorite Mexican restaurant? Family meals around the dinner table? Thanksgiving turkey? Christmas ham? Friends, good food and wine? Is it just something you need in order to survive? According to the Websters Dictionary food is "any nutritious substance that people or animals eat or drink, or that plants absorb in order to maintain life and growth." For most people food is life. For someone with life threatening food allergies, one bite of food can be death. It becomes a constant source of stress, anxiety, and fear. Emergency rooms, ambulances, Epi-Pens, needle pricks, skin tests, blood draws, food challenges and even death are just some of the things children with life threatening food allergies are faced with every single day. Food allergies do not just effect the patient.,they effect every person that loves them. It is a festering wound of paranoia and fear. Loving someone with food allergies has been the hardest thing I have ever encountered in my whole life. Wanting to protect my daughter from one of the most basic every day things in life -- FOOD -- has almost made me go crazy. Ella is the toughest little girl I have ever had the honor of knowing, let alone the honor of being called her Mommy. She has taught me more about life, love, strength and kindness in her 2 short years than I could have ever imagined. She has never lost her smile. Her light. Through it all she has blossomed and shined. Not in spite of her allergies. Not in spite of her tough start to life. She has bloomed into this amazing young girl because it is who she is in her soul. If you have ever looked deep into her big hazel eyes... you know exactly what I am talking about.

So... How did we get here? Those beautiful hazel eyes. That is how we got here. Everyone, and I do mean everyone used to tell us we should put Ella into modeling. "She has the most beautiful big eyes" they said.... And like any proud first time mom, I knew it to be true. So I sent out some photos to local modeling agencies in the area and on the first day we got a call back for an interview for two days later. Slight problem. Ella was getting over one of the many colds she had in her first months of life (totally different story) and her nose was running like a faucet. I went to my trusted Facebook Mommies group for help. How can I get her nose cleaned up in time for her first big "Go See"? It was suggested to me to try a holistic remedy called Goot. Goot is a mixture of coconut oil, garlic and olive oil. Mix it together and apply to the nostrils and your snotty nose gone! I jumped in the car and headed to Whole Foods for the ingredients. As soon as I got home I mixed up my Goot concoction and had my husband Arthur help me apply it to her nostrils with a Q-tip.

 I remember the events of that night like it was yesterday - it is burned into my brain. We held her down while she screamed and applied the Goot. Within 30 seconds of the application, her face started to turn red. We watched for a few seconds. Maybe she was turning red because she was crying? No. I already had her bath water running, so I took her into the bathroom and put her in. Within 60 seconds of that I could see something was horribly wrong. Her top lip became rock hard and her lips were swollen. Hives started to take over her entire body. I screamed from the bathroom "WE NEED TO GO TO THE ER!" My husband came running and within another 2 minutes we had her in nothing but a diaper and headed to the ER right around the corner. In less than 3 minutes flat our whole lives got turned up side down. I vividly remember driving those 4 blocks to Kaiser saying over and over again to Arthur in the back seat " Is she ok? Is she breathing?" I knew exactly what was happening. She was having an allergic reaction. My brother also has a life threatening peanut allergy and I have seen it in him many times. You would think I would be more careful.

After getting into the ER, Ella was seen almost immediately. Luckily, I thank God every day that her throat did not close up that night. She was prescribed a steroid and sent home to follow up with her regular pediatrician. When we came home I walked straight to the coconut oil and looked at the label. That moment would become the beginning of our journey. Our lives would now revolve around the scrutinizing of every single ingredient on every single label. "MANUFACTURED ON SHARED LINES WITH PEANUTS" my heart sank. I knew. I knew what happened to her, she had an allergic reaction to peanuts. As I said earlier, my brother has a severe peanut allergy as well, so in that moment I truly thought I knew what it all meant.

I didn't sleep much that night and the first thing I did the following morning was make an appointment with Ella's Pediatrician. We were given an appointment for later that afternoon. It was a pretty uneventful appointment. Her pediatrician said what I already knew, that Ella most likely reacted to the coconut oil and she ordered a blood test. We walked out of the office and down the hall to the lab. That would be the first of entirely to many needles sticks for my sweet girl. For the next 2 days I patiently awaited the call from the office with the lab results. At 545 PM two days later I got the call that confirmed everything and solidified the change in our lives. Ella tested negative to 7 of the top 8 allergens as well as an additional test for coconut; however she did in fact have a dangerous reaction to peanut protein. All the Nurse said was "Stay away from peanuts." That was that. I said thank you and hung up. And then I cried.

Over the next 6 months Ella would have several trips to the ER and 2 stays in the Pediatric ICU at Sutter Memorial Hospital for viral induced asthma(again that's a different blog story). However, it wasn't until her last PICU stay that we would finally be referred to Ella's specialist in asthma and allergies: Dr. Chipps.

Dr. Chipps was an asshole. The best in his field in Northern California, but an asshole nonetheless.  I tolerated his tendencies and poor bedside manner because I knew he was finally going to give Ella the care she needed. The first step was to get her asthma under control and in the back seat was her food allergies. At this point we weren't even carrying Epi-Pens. We finally worked out an asthma plan that would eventually control Ella's breathing and leave her symptom free from that first visit in his office in August of 13 until today. Then came the allergy testing.

We knew Ella reacted but we never really knew much more than that. That's the thing with allergies, they are so hard to put your finger on. Blood testing is only accurate about 60 percent of the time. Skin testing is the next best option but is traumatizing for any child being pricked in the back 27 times while being pinned down by 3 nurses. Actual ingestion of the food is the gold standard for testing, but Ella has always been way too young for that option.

All in all, Ella has had 4 regular blood RAST tests, 1 component panel (tests the 9 specific proteins in peanuts to predict the likelihood of systemic anaphylactic reactions) and 3 skin prick tests. She has failed every single one. With each new test that came, I remained hopeful. I held my breath and I prayed. Good news was coming. She is going to out grow this. The other tests were false positives. I repeated those things over and over to myself until I believed them. No. Every single test result that came back was a punch to the throat. I have always done my best to keep my big girl face on in public but there have been many times I have sobbed in the shower after getting results back. All I wanted, all I prayed for was for Ella to be able to experience every normal thing that every other child her age does. It wasn't until after the last skin prick test and the 2nd anaphylactic reaction (that came from me simply touching a piece of bread and then touching her arm) that I finally accepted it as truth. Ella IS allergic to peanuts.

Soooo.... What to do next? Well, I can tell you this, any mother knows: A worried mother does better research than the FBI.

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