Friday, September 26, 2014
The most important issue in the forefront of my mind since Ella's initial diagnosis has always been sending her to school. The thought of sending Ella to school makes me want to vomit.Things are all fine and dandy at the age of 2 when she is never farther than 5 feet away from someone who loves her and knows how to protect her, but the idea of sending a 5 year old to school where they serve peanut butter and jelly in the cafeteria everyday and expecting her to navigate her own safety is just to much. It has always been something I found completely ridiculous and wanted to see changed. Then last summer when Ella was barely a year old Arthur came home from work and told me about a doctor at his work who lost his 13 year old daughter over the weekend after she bit into a peanut butter laced rice crispy treat at summer camp. Natalie Giorgi. Natalie changed our lives. Natalie had known to take all precautions to keep herself safe and she still died from her peanut allergy. Natalie's parents were with her and she still died from her peanut allergy. Natalie's father was a doctor, he performed CPR and administered 3 Epi-Pens himself and she still died. Natalie's story made national headlines and shocked me to my core. How can you do everything right and still loose your child? I had to do something. I had to take action.
I decided to use Change.org to create a petition to make a state law that would require all California schools to become peanut free. That made sense to me, it was something I could possibly accomplish. So, I wrote up my petition and went to social media to spread the word. I was very aware that my friends list on Facebook wasn't going to cut it in getting the word out the way I needed it to. I needed this petition to go viral. A quick search of Facebook found me the group Parents of Kids with Severe Peanut Allergies toting an impressive 8,000 members. Who better to spread the word than parents just like me. I requested to join the group and as soon as I was approved I shared my petition. I ended up with close to 2,000 signature but ultimately I never gained the traction I truly needed (again that's an entirely different blog.) Regardless, I found myself in an amazing group with so many parents that truly understood me. Through the process of all of this I kept seeing these posts about Oral Immunotherapy or OIT which was a new and promising treatment for food allergies. The basic concept is that of allergy shots. You introduce the allergen in the smallest possible amount and then work up until the body creates a tolerance. Voila, no longer allergic. How did I not find this in my previous research? I mean I have reached the edge of the internet researching food allergies. I could write a book. How did I miss this? Well, to start OIT is still in the infancy stages and is still being studied in research programs across the county. There are less than 20 doctors offering OIT in the entire United States. I inquired more on the posts in Parents of Kids with Severe Peanut Allergies and was eventually referred to the FB group Private Practice OIT. Private Practice is a group of all families that are either doing OIT or beginning the process of starting OIT. After becoming a member in that group I found the files section that listed every doctor in the country that actually offered Oral Immunotherapy. Much to my surprise there was actually a doctor in Sacramento offering OIT through Mercy Medical Group. We live in Sacramento. What are the chances?
Sitting in my car outside my house I made the call to this miracle working allergy healing doctor in the town I live in and said " I need more information on OIT." The doctor was out that day and I left a message for her to call me back. Hope. I finally felt some hope, I could taste the hope... It was so close. I waited. I waited 2 days with no return call before I called back and left the same message... I waited again. I waited 2 more days and no return call. I called again. Finally the following Tuesday while I sat waiting to take my gestational diabetes test for Maxine I got a call back. I was informed that this particular doctor does not offer OIT for children under the age of five years old. Crushed. She suggested that I contact Stanford to try and get Ella into their clinical trial. Then she said something I will never forget and may very well be one of my proudest moments as a mother " I am sure if you are as persistent with them as you have been with me your daughter will be just fine."
Back to Facebook. I posted in Private Practice about my disappointment about the doctor here in Sacramento and I was informed that there was in fact a doctor in Fremont that offered OIT to children starting at age two: Dr. Jain.
At this point it was almost exactly 1 month before Ella's 2nd birthday. I called and yes, they do in fact offer OIT to 2 year olds. I spoke to them about insurance and what not and scheduled the appointment for a month out. On a side note I am 8 months pregnant at this time so I let them know they only way I would miss this appointment was if I went into labor. Well, wouldn't yah know that 3 weeks later at my 38 week appointment my doctor decided to schedule my induction for that Friday the day of Ella's consult. This would be the first time in Ella's entire life that anyone or anything would take priority over her and her allergy. I rescheduled the appointment for early September and on July 27th 2014 we welcomed Ella's baby sister Maxine Marie McCauley into the world at 10:07 am.
Fast forward 6 weeks to September 11th.... Yes, September 11th. Fitting. We packed up the girls and started the 3.5 hour trip to Fremont to meet Dr. Jain. If any of you happen to have a newborn and a 2 year old then you know how much fun that trip was... Our consult with Dr. Jain was actually quite uneventful. I had researched the process until I wanted to rip my hair out and was already secure in my decision that if he would take Ella then we would be doing this treatment. "Ella is a great candidate" he said and we responded with "When can we start?" and that was that. We booked out our appointments for the next 12 weeks and would be done in time for Ella to eat 5 peanut M & M's by Christmas day.
Now comes the fun part. Insurance. OIT costs roughly $10,000 at $200 an hour to be payed up front at each 8 hour appointment once a week. Many insurance companies don't cover it because it is seen as an elective procedure. Our insurance did not cover it. I will leave out the details of the fight that ensued on the drive home that day but all I can tell you is the only thing we agreed on was that she was getting this treatment regardless of what had to be done. We came home and started looking at loans, retirement accounts etc. We had a few more fights and at one point I may or may not have started throwing things out the front door. Then, like a miracle.... Maxine to the rescue. Maxine's birth was a life changing event that allowed Arthur to change his insurance. YES. All was right in the world. Ella will never get to live down that her little sister paved the way for a new life before she could even hold her head up.
The first thing I did once the dust settled was look at pre-schools. Ella is going to get to go to pre-school. Ella will get to go to the park and eat ice cream and go to baseball games and birthday parties. Ella will finally get to do every single thing that every other child her age gets to do. The sky is the limit.
Once the initial high of the thought of our new life wore off the reality set in. We are going to feed her peanuts? We are going to feed her the one thing we have spent the last 18 months making ourselves crazy trying to protect her from? We are going to feed her the one thing that could kill her in 2 minutes or less? How can we do this? I don't think I can do this. Panic. I lied awake that night staring at the ceiling running through all these questions in my head but somehow as quickly as the panic came the rationale started to take over. We have a choice. We can continue to live in fear every single day of our lives that she will accidently be exposed and taken from us.... or.... we can choose to walk in faith and put our trust in Dr. Jain. We can choose to trust this man with our most loved gift and trust that he will cure her. Yes, we are going to walk in faith. We are going to feed her peanuts, peanut flower to be exact.
Tuesday, September 23, 2014
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.