It may seem odd that a post about being thankful – begins with our decision to pause up-dosing Sosi’s peanut Oral-Immunotherapy (OIT). Why have we decided to do this? Well, there are a few reasons : reactions, skin testing, and my anxieties around a new school and me learning to trust other adults with keeping Sosi Safe.
A few weeks ago, a lot happened within a 5 day period of time. Starting us off was Sosi’s yearly skin test with her regular allergist, resulting in similar results as last year. The readings were 5mm for milk and 11mm for peanuts. These numbers indicated a need for blood-work to help us decide what will be the next best steps for continuing up the milk ladder. So skin prick test and blood-work all in one day, no fun.
After disheartening skin test results, a lip reaction, and a new school schedule with new situations involving trusting new adults to keep Sosi Safe, this food allergy mama is tired, and needing to slow down.-SosiSafe
Since switching to actual peanuts, Sosi has reacted to some doses. The reactions happen fast, with no real warning, which makes it really hard for me to stay calm. Hearing Sosi say, “Mama, by lip is itchy and puffy,” just hollows my heart and drops a quick punch right into the pit my stomach. Watching your little girl’s lip go from, “normal,” to swollen is alarming, even with knowing the facts. Her lip reactions are due to little cuts on the skin, which often occur in younger OIT patients as the winter months roll in, and lips start to crack. Thankfully this type of reaction is equivalent to a skin prick test, where there is absolutely a reaction but it not systemic.
Something important to note is the strict rules surrounding each dose. Sosi is not allowed to be physically active, or elevate her heart rate for one hour before her dose, and two hours after, three hours total. As you can imagine, this requires some creative daily scheduling and planning to occupy this busy toddler without relying solely on technology. Baths are also a no-no since the body temperature increases which could cause a reaction, so another activity we have to carefully factor in each day.
I prefer to up-dose in the morning because the rest hour before the dose has already been honoured, however that leaves us two hours after, which is a tight squeeze before school starts in the morning.
So, where do we go from here? Thankfully our allergists are all very understanding and openly accept our plans to pause the up-dosing. We are two appointments shy of completing the daily goal of 2.0 grams of peanut. Currently Sosi’s daily dose is 0.50 grams of peanut (which is roughly half a peanut). It really is a large chunk of peanut, and we are so thankful to have come this far over the past 12 months.
I am so thankful for Oral Immunotherapy, even though we are taking a break, I completely acknowledge how far Sosi has come. We lived in fear of a crumb of peanut, and now we freely go to public places. I should also point out that I am a little bit better when it comes to the constant hand wiping. The science of oral immunotherapy is slowly creeping its’ way into my subconscious and I am extremely thankful for this breath of calm, during the anxious moments in our days.
I am so thankful for such an amazing army of Food Allergy supporters – seriously, you are all amazing! To all the Moms, Dads, Grandparents, Husbands, Wives, Aunts, Uncles, Sisters, Brothers, Cousins, Teachers, Principals, Colleagues, Friends, Preschool Pals, Neighbours, Coaches, Empathetic parents, and my amazing employer, we are so thankful for you. A special shoutout to Mr. SosiSafe, as he deals with the brunt of my anxieties at the end of each day.
Happy Thanksgiving everyone!