Sunday, October 4, 2015

Approaching the "end"

Peanut OIT Day 1: December 13, 2013
Almost 5 years old
Today, October 4, 2015 marks exactly 1 year, 9 months, and 21 days since Big Monkey took his first bite of peanut flour. That equals approximately 805 peanut doses consumed, approximately 7,400 miles driven, 9 office visits, a handful of times using our medications for mild reactions, and 0 epi-pen uses. Big Monkey started off his journey consuming 32.5mg of peanut and has increased 460 times that amount to his current dose of 15 grams. Now here I sit just 3 short weeks away from what will hopefully be the appointment that concludes this amazing journey. I thought before we set off for that final appointment, I would reflect a little on what this journey has been like for us.

15 grams of peanut in peanut butter form (with a touch of nutella and sprinkles for fun)
It feels like a dream that we are almost done. We have been doing this for so long now that it just feels like a part of our lives. In fact, the thought of no longer having doctors appointments with the amazing staff makes me pause and feel a little strange. It's almost like a part of me will be misplaced. I'm sure I'll get over that really quickly, but right now, I can't imagine things being any different. It has been an amazing journey offering my son so much freedom toward a "normal" childhood, but it has also been exhausting. Big Monkey had to consume a regular high diet of soy and legumes in the beginning. He had to be on several antihistamine doses as well as a nasal spray. He HAD to eat a certain amount of peanuts (sometimes in a particular form) EVERY SINGLE DAY for almost 2 years now. If you've been a parent of a young child, you know just how exhausting making your child eat a certain food every day can be. Just getting them to eat something other than goldfish can be an exhausting experience! For those of you that are not parents, well, imagine what it is like to get a cat into a bathtub, and that will give you a decent idea of what it can be like to convince a child to eat something they have decided they don't want to eat.

What our thousands of miles have looked like
We haven't had to drive to the office weekly or even biweekly, but even the trips that we have to make on someone else's schedule has become tiring. It will be nice to travel back to grandma's house on our own time based on what time of year we would like to be there. We have driven many miles. I would do it all again in a heartbeat if I needed to, but I would not be telling the truth if I didn't say I was ready to be done.

A hike into the middle of the wilderness pre-OIT would have been terrifying
Has it all been worth it? Absolutely! Without a doubt! Before starting OIT, Big Monkey used to randomly break out in hives. We went to a bakery once and he had a double vanilla cupcake and by the time we made it to the car, his arm was covered in hives. They also had peanut butter cupcakes in the shop (on the other side of the display case). He developed hives on his cheek after a flight on Southwest despite wiping down everything. He had his first anaphylactic reaction at a playdate from eating at a table where peanut butter had been consumed before we even got there (and had been cleaned!). The list of restaurants we couldn't eat at was lengthy. Those that we could visit received the third degree questioning from me before we could even order, and even then it was a risk. I always felt on edge waiting for the shoe to drop and a reaction to happen. I remember once going to self serve frozen yogurt after dinner one summer day. Big Monkey got ice cream and toppings from a new bag from the back of the store. We ate and came home to get ready for bed. Then we noticed a strange rash looking thing on his feet and had to keep him up almost 2 hours past his bedtime and were in a panic trying to decide if it was him reacting to the ice cream. We realized it was rash from his shoes, but we vowed to never visit the frozen yogurt store after 3pm ever again. And we didn't. Frozen yogurt had to be consumed before 3pm or not at all so that it didn't interfere with bedtime. We lived with a constant low level of fear. Now I forget to ask the restaurant if they fry their french fries in peanut oil until Big Monkey has the fry posed to go into his mouth. I never call ahead, and we can go to frozen yogurt whenever we want!

Now we hike and camp off the grid often, completely fear free
Beyond how this has changed our lives personally, we have also contributed to the overall progress of this amazing process for those to come. We are just one data point in a collection of many that will provide information on protocols, reactions, roles of environmental allergies, trends in blood IgE levels, and more. We may only have one allergen to deal with, but we have friends, both from pre-OIT and during, that are allergic to multiple foods. Some as many as 12+ foods. Can you imagine living deathly allergic to wheat, eggs, milk, soy, and all nuts? Check the next food item you pick up and see how many of those things it contains. Oh yeah, and don't forget to check and see if it was made in the same facility as any of those items because that could kill you too. We may not have gone through OIT for these allergens specifically, but our success with peanuts helps OIT for other allergens as well. We are a piece of a much larger puzzle, but every piece is important for this to become a real option for many, many more people.

I am thrilled to say that we have already been a huge part of some awesome changes in our clinic that are just the beginning of something much bigger. We have remained vague in the past about our location, but we have decided that it would benefit so many more if we shared the information on our amazing OIT physician and his clinic (and he deserves the credit!). Dr. Randhawa is our food allergy super hero and is changing lives one food allergen at a time! Please check out the new clinic website at TPIRC and feel free to contact me if you have other questions or want to learn more!

One brave little man and his daddy
I look forward to reporting back a big huge success in just a few short weeks!

No comments:

Post a Comment