“You are the bows from which your children as living arrows are set forth”, K. Gibran.
As a parent I must prepare my children to become capable, resilient and independent people. For my kids this includes how they must protect themselves against a life threatening allergic reaction and how to manage a reaction if it happens.
Ever since their diagnosis with food allergies in 2006 & 2009 my husband and I have been teaching ourselves and our kids how to stay safe. In order to ensure their safety there are a lot of rules like no food sharing, wash hands before eating, always carry your epi-pen, read labels, tell those around you about your allergies so they can help you stay safe. I constantly remind them to do these things but as they get older they must take over the responsibility. They are starting to do this.
Yet as they become typical self conscious teenagers I worry – maybe they won’t want to make the allergies seem like a big deal, maybe they won’t always carry their epi-pen around, maybe they will accept food without asking what’s in it.
Simon Katz died in September 2015 because he took a bite of a friend’s s’more which unknown to him contained peanut butter. He did not have his epi-pen on him. He told his friends not to worry he’d be okay. His friends shared about what happened that day here:
Earlier this week Owen Carey died celebrating his 18th Birthday. He did not have his epi-pen with him that day. His father said: “a stupid bit of ‘plain grilled’ chicken cooked the wrong way robbed me of my son. I will never, ever, be able to replace him. He has gone forever.”
These deaths are devastating and and remind me that I won’t always be there by their side. They have to advocate for themselves, not eat without an epi-pen and surround themselves with caring people who will also look out for them.
My hope is that oral immunotherapy will decrease this heavy burden of food allergies. However, even after successful completion of OIT they will still have to carry their life saving epinephrine because reactions can occur post completion in the maintenance period when they will be taking daily doses of the allergen to maintain the desensitization.
Still, in the quest to send forth living arrows that can fly freely we continue with OIT.
Yesterday we were seen by Dr Hanna for OIT updose #4.
Sahil was given 1 mL of a higher concentration of peanut solution – 5 mg/mL instead of the 0.5 mg/mL of which he has been taking increasing doses since starting OIT. He was nervous because it is an increase from 2mg to 5 mg. This is 1/32 of a peanut! Thankfully, he successfully ingested it and had no symptoms aside from one sneeze about 20 minutes after the dose.
Jaya was given 16 drops of the diluted milk solution. She also sneezed once about 10 minutes after the dose and complained of itchy feet which subsided after removing her socks.
We will be returning for updose #5 in three weeks instead of the usual two because Dr Mack & Dr Hanna are moving to a new location and need time to set up there. Sahil and Jaya will be on updose #4 for the next three weeks. We are okay with the extra week because from the research I have done the slower we go the better.
Like life, the OIT journey is a marathon, not a sprint.