Friday, September 26, 2014

Finding Dr. Jain



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.

2 comments:

  1. Thank you for sharing this! Would love to hear more about your experience with OIT and hear how she is doing now!

    ReplyDelete