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.