Saturday, October 25, 2014

Allergic shiners and the sniffles.

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

Peanut Flour

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.