This is probably not the blog you are expecting to read.
It has been roughly 6 weeks since Ella "graduated" from OIT and I am well aware that I have not updated this blog since she was somewhere around a half of a peanut and in about week 7 of her OIT journey. To be perfectly honest most of the middle trips to OIT that got her from a half a peanut all the way up to her maintenance dose are a complete blur; as it goes with 2 little babies, the holidays, work and life in general my writing has taken a back seat.
What I can tell you is that since graduation day Ella has eaten more and experienced more in 2 months than she had in the entire previous 2 years of her life.
It is quite ironic that Ella completed OIT in the month of November as many feel that November of 2014 was the "Breaking Point" for the allergy community. I can count off the top of my head 7 food allergy related deaths just since Halloween less than 3 months ago, to say that many of us have been rocked to our core is an understatement. For me, the day after Christmas made the "Breaking Point" that much more terrifying.
I have always used the hashtag #Ilovesomeonewithlifethreateningfoodallergies, that of course refers to my Ella but what many don't realize is that also refers to my older brother Brian. Never in a million years would I have ever thought that in my effort to keep Ella safe and potentially save her life that I might in fact be responsible for almost taking my brothers.
On the morning after Christmas my mom and Brian came over to have coffee and visit before heading back home to Napa and just like any other morning we had to feed Ella her daily maintenance dose of 5 Peanut M and M's. We have several theories of how Brian came in contact with Ella's dose although we still aren't really sure. How he came in contact truly doesn't matter anyways because we know he did and we know he did because it almost killed him. Brian collapsed in the street walking to his car on his way to head back home.... He was fine when he said goodbye, he walked out, he coughed 3 times and then he was lying in the street in front of my house. As I grabbed his Epi Pen Injectors and went to administer the first one it malfunctioned with all the medicine pouring out before it even came in contact with his leg (an event they may replay over and over in my head and continue to haunt me for many many days.)
I was able to successfully inject the 2nd Epi into his thigh and as I looked up at him I could see that he was beginning to be able to breathe again. I am probably the least religious person I know but in that moment I prayed for God not to take him. I prayed for a cure. I prayed for all the children and adults of this world to have this allergy taken from them.... and I thanked God for OIT being available to help even some.
Brian required 2 more Epi injections in the ambulance on the way to the hospital alone because as the first injection began to wear off I watched his lips turn blue and him again struggling to breathe.... and again I prayed. Today, 3 days later he is finally stable but we are all shaken. My family could have lost our son, brother, uncle and friend taken from us by a peanut.
Shortly before Ella began OIT Arthur asked me in passing if "After Ella is done and safe are we going to become those people?" I responded back with "What people?' and he said "You know the ones that don't think or care about allergies at all and make peanut butter cookies for a bake sale?" and my response back to him was "We will never stop being the voice for these children, for anyone who suffers from life threatening food allergies, we will NEVER stop advocating for them, just because we may get out of the trenches doesn't mean we ever forget about them."
My voice is loud.... I know that. I also know that many are probably sick of hearing about peanuts but I really don't care. I know that for every person that is sick of hearing about it there is one that wants to learn more. I know that for every person that rolls their eyes there is one that is messaging me to ask about safe snack options for their childs classroom. I know that for every person that wants to tell me to shut it there was another person that painted a teal pumpkin in honor of Ella. For every person who doesn't "get it," there is one that totally does.
When I originally wrote this blog entry it was meant to recount the day Ella completed OIT, her big party the day after, all the new food that she has been able to try and the dance recital she was able to be a part of as a result of completing her OIT journey. However, Ella being able to eat some Ice cream seems trivial in comparison to what we experienced that day with my brother. Now, that does not mean that I suddenly think OIT is not important or that it hasn't changed our lives. What I am saying is that it is exactly the opposite. OIT is not about ice cream or pizza or cupcakes, it is about saving lives. The fact that OIT is still considered "Controversial" or that people think I have used my child as a guinea pig, that OIT is dangerous or not ready for mainstream, the fact that OIT is probably YEARS away from being a widely used practice in allergist offices around the country makes my heart hurt. I can't help but wonder how many more have to loose their life to a peanut before something more is done?
Saturday, October 25, 2014
Ella's allergies have always first manifested themselves in her eyes and her asthma has always first manifested itself through her nose. I found that Ella had a soy intolerance at 9 months old when she started developing horrible dark puffy circles under her eyes after switching to soy formula. In the first year of Ella's life whenever she would get the slightest hint of a runny nose we would end up in the ER or NICU within 3 days being treated for respiratory distress; I swear I still have mild PTSD from those early days of battling Ella's food allergies and asthma. So, when I noticed Ella developing allergic shiners during the first weeks of OIT it made me uneasy to say the least. When I saw Ella develop a runny nose 2 days after starting her second week of OIT I almost had a legitimate panic attack.
It was Saturday morning when I noticed the runny nose and knew that it was the beginning of a cold. I used to always try and think positive, maybe it was just allergies? However, surprisingly enough, Ella has never suffered from seasonal or environmental allergies only food. So I knew when I saw that runny nose she was showing early signs of sickness. Not only was there the issue of controlling Ella's asthma, but typically children with any sort of illness or infection do not tolerate their doses well and either need to drop down a dose or temporarily stop dosing until the infection subsides.
At this point Ella had worked her way up from 1.5 milligrams of peanut flour on her first day of OIT to 6 milligrams of peanut flower on her second and was sitting at 6 mg for her daily dose when we noticed the runny nose. Since she was obviously showing signs of an infection I held off on her normal morning dose and called Dr. Jain to see what he wanted us to do.
Dr. Jain advised us to "pretreat" Ella with 5 mls of Claritin and give her the normal 6 milligram dose as usual and keep a close eye on her, as long as she didn't react then we could continue to move forward with our daily dose for the rest of the week until we went in for updose on Thursday. Ok, so that crisis was temporarily averted. If she didn't tolerate the 6 mg dose, one of use would have been driving 6.5 hours round trip to pick up a smaller dose.
The next issue was keeping Ella's asthma at bay and keeping her breathing at a normal state. In theory this shouldn't be to complicated since she has been on inhaled steroids to treat her asthma since she was 6 months old. Unfortunatly nothing with Ella has ever been easy or gone as it should. I busted out my tool box of natural remedies and loaded her up with Elderberry, Vitamin C and D. All we could do now was watch her and wait.
Sure enough the next morning Miss Ella woke up with a gnarly cough and slight wheeze. The sickest part of all of this is that coughing and wheezing are symptoms of anaphylaxsis and its not like we were feeding her peanuts everyday or anything.
Over the next 5 days essentially every time she coughed Arthur and I both stopped dead in our tracks. On Wednesday night as we were laying in bed I was staring at the ceiling listening to Ella cough from her room and said " I have a feeling we are going to walk into OIT tomorrow and turn around and walk right back out." I did not believe we would be updosing with that cough. But Arthur with his forever optimistic attitude said "lets try to think positive."
We woke up the next morning at 4 am and prepared for the 3 hour drive to Fremont and hit the road. Upon arrival to our OIT office we let the nurse know that Ella was still getting over her cold and had a cough. The nurse went to get Dr. Jain and he came in to examine her. He told us that it did sound like she had mucus in her lungs but since we had driven so far we would in fact try to updose but would take it very slow.
In true Ella warrior form my amazing little girl still killed it on updose day regardless of her cold. The doses went 8, 10, 12, 16, 20, 30 milligrams and then back down to 20 milligrams as our home dose for the next week. We packed up the girls and headed home.
The next morning in the shower came the shiners. Ella looked as though she had been punched in both eyes. She looked very incredibly tired. It is a look I have become all to familiar with. The evidence of Ella's allergen under her eyes is been a pretty constant addition to our lives since starting OIT. I have had many people ask me "How I feel about this? How do I feel about watching her body try to fight off this allergen?" I also know that many people can't possibly understand or fathom what we have chosen to do here. The short answer is: IT IS HARD. Being a parent of a child with life threatening allergies is not for the faint of heart. Being a parent of a child undergoing OIT is not for the weak spirited. Watching your babies body go through the fight of their life is gut wrenching but it is no harder than watching her go through anaphylaxis, it is no harder than watching her in the NICU for her asthma, at least with OIT we have an end in site... We have HOPE.
With that said I have also had more people than I can count tell Arthur and I how amazing we are, how lucky Ella is to have us as parents. People tell us all the time these amazing outrageous compliments. However, what I know is that we are not doing anything special. We are not doing anything that any other parent wouldn't do for their child. Our life managing Ella's health problems is obviously not ideal and it has been horrible but we are not martyrs for the cause. Arthur and I are simply parents just like any other than love our sweet little girl to the moon and would do anything to protect her and are learning like any other allergy parent out there how to navigate through this crazy life of food allergies.
Monday, October 6, 2014
The morning of Ella's first OIT I woke up at 3:30 am to get everything ready that I couldn't do the night before: loading the car and packing lunches (we have to bring our own safe food even to OIT.) We had to be out of the house by 5:30 in order to make it to Fremont by 9 am. I woke Arthur up at 4:45 and went to finish my coffee and feed the baby. Arthur went to get Ella up and as he walked out of her room holding her she reached for me and said "I sleep good mommy". I grabbed her and she put her head on my shoulder and I said " Are you ready for the first day of your new life?" I looked at Arthur and he had that look. It is so hard to describe, its just a look of a father that loves his daughter but is filled with worry all at the same time. I hate that look... It makes me uneasy.
Arthur is the calm one. Arthur never loses his cool, he never gets worried or stressed, he doesn't take much very seriously and he certainly never panics. I have only seen him panic one time in the 3 years I have known him and it was when he thought I cut my finger off when I was 8.5 months pregnant with Maxine. If you know Arthur you know what I am talking about, it is just in his nature to be care and worry free. If you know me, well... you know I am the exact opposite. The only times I have ever seen worry on his face is with Ella, with his first born, his sweet baby girl. Probably the only thing I have ever seen him take seriously is Ella's allergy. He has never doubted for a second that it could take her life and that it could take her from us. You see, Arthur was with me that night when Ella was still in my belly, when we had no idea what the future would hold for her and when I got the call that my brother had collapsed at work and was being rushed to The Queen. Arthur stood there and held my hand as the doctor told me that my brother Brian had suffered an allergic reaction, that it was a very close call and "if he got here 5 minutes later" they don't know that they would have been able to save him. Arthur has sat up with Ella on his chest in the NICU for 8 hours straight through the night to help keep her oxygen levels up. Arthur knows. Arthur has never doubted me in my attempts to heal her. So when Arthur is uneasy it makes me uneasy.
So we loaded both girls into the car that Thursday morning and as I was shutting the door I felt a few sprinkles of rain on my head. By the time we had left our street it was pouring rain. REALLY?! We are in the worst drought in the history of California and the universe decides to give us torrential down poor on this day of all days? I felt like it was some kind of sick omen. Am I bringing my daughter to be slaughtered like a cow? Then my dear friend messaged me and said "Think of the rain as washing away all the old struggles and worries, this is your new life." O.K.... I can work with that.
We made it to Pinole before I started having my panic attack. The combination of the rain, traffic and the idea of feeding Ella peanuts finally took its toll. I started to get hot, couldn't breathe and got light headed. Luckily Arthur is as amazing of a husband as he is a father and was able to talk me down with a combination of humor and zen music on the radio. It is going to be ok. It was going to be alright.
The traffic was absolutely horrendous and it took us just under 4 hours to make it from Sacramento to Fremont. We arrived 30 minutes late and began loading all of our stuff into the office. We were quickly moved into our room for the day, a room about the size of any standard doctors office that you see every day. Arthur, myself, Ella and Maxine in an 10 foot by 10 foot room for the next 9 hours.... this should be fun!
The nurse took Ella's height and weight along with her vitals and explained the process to us again. They would start with the lowest possible dose of peanut protein mixed with a cellulose powder and work up from there. We would start at .01 milligrams of peanut protein which is about the equivalent of a grain of sand. After that, every 30 minutes we would take Ella's vitals (blood pressure, temperature, respirations and O2 saturation) as long as all her vitals were normal we would continue to up the dose until we saw signs of a reaction. At whatever dose she reacted to we would then go down one dose and that is what we would be sent home with to feed her ourselves until the next week. Our nurse Heather left to prepare the peanut flower and Arthur looked at Ella and said "Ella show me where your throat is" Ella grabbed her throat and he said "Ok, good girl" Yes. We are going to feed her something that could make her throat close... and she is barely two years old. I mean, come on, she still uses a binky. Can she tell us if her throat is itchy? If she feels sick? We have to trust that she can and most importantly that we know our girl well enough that even if she cant we will know for her. Ella was still wearing her footy pajamas from the night before and while heather was preparing her first dose I looked at Arthur and said "I am stripping her down, we need to see her skin." He agreed.
Heather came back with Ella's first dose of peanut flower and between Art and I you could cut the tension in the room with a knife. I seriously don't think either one of us took our eyes off of her for the next 30 minutes, they were glued to her tiny little body. She did fine. Heather took her vitals and went back for the next dose, the equivalent of two pieces of sand. Dose two in. We continue to watch. I looked over at her and she had a small red patch on her back. Not a hive just a read spot. Heather came in to examine her and take vitals and when she saw the red spot she decided to go get the doctor. When Dr. Jain came back the red spot had started to subside, he decided to just back down to her previous dose and watch again. Dose three in (which was really the same as dose one.) The red spot had gone away but then came back in a different spot on her back and Dr. Jain decided to give 5 mls of Claritin and go up one more dose to .03 milligrams. We never saw that red spot again that day. Over the next 7 or so hours we were able to slowly work our way up to 2 whole milligrams. Now, that sounds like a lot but to put it into perspective, our end goal is 4,000 milligrams. We are talking about the beginning doses of peanut not even being able to be seen with the naked eye.
After a very long day of the four of us becoming very close as a family (just imagine being in a doctors office room with a 2 month old and a 2 year old for 9 hours) we took our home doses and packed up the girls at 6 pm to make the 3 hour drive back home. Ella was asleep before we even left the parking lot and we finally pulled into our driveway at 9 pm that night.
It was now our job to administer Ella's doses at home and continue to monitor her. She is supposed to have a rest period for 2 hours after her dose as well as shying away from extreme heat or physical exertion. Did I mention she is two? For the most part we have been able to keep her calm in the mornings by planting her in front of a few episodes of Caillou for 2 hours. In the first week of home doses the main issue we have experienced was stomach upset. I will spare you the details. On the Saturday following Ella's first OIT day we took her to a housewarming party where it was very warm and she was running laps through the house. I quickly noticed her face turn beat red and what appeared to be a hive on her cheek, this was 6 hours post dose. I administered her Benadryl and we left. I sat in the back seat of the car with her and by the time we got home her face had gone back to normal. We haven't taken her out of the house since. The following day I noticed that Ella had developed allergic shiners (a term used to describe dark circles under the eyes of children when they are suffering from allergies.) I pointed them out to Arthur "She has allergic shiners" I said. Arthur had that look again, that look of worry. Arthur is just as aware as I am that Ella's tiny little body is going through the biggest fight of her life. What we also both know is that while it may be hard to go through now, while it may be hard to watch her little body fight, we are giving her the best possible chance and overcoming this disease. We have faith in this process and mostly we have faith in our sweet little girl.
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.