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!

Tuesday, August 18, 2015

Biannual Update - Yikes!

So it's that time of year again! Time for my biannual update. Doh! I really need to work on that as a twice a year post is just not acceptable, especially as more and more people ask about my blog due to our OIT success to date. My husband has suggested that I turn this blog more into an OIT information dump and share my experience and all the knowledge I have picked up along the way in the past few years of this journey. I just may have to do that, so stay tuned for future posts to learn more!

Anyway, where are we today? We are making giant strides! Our last appointment with our amazing doctor was at the beginning of June. While we were silently hoping that maybe, just maybe, we would skip from maintenance step one to graduation, we knew that there was a good possibility of a step between the two. That is exactly what we did.

Big Monkey went into the appointment consuming approximately 15 peanuts a day for a total of almost 4 months. He did great on that dose. Not a single reaction that I can remember at this point. Very uneventful. So we went into the appointment unworried, and rightly so. The biggest fiasco that happened at that appointment was that there was no ice cream in the freezer (Big Monkey's chosen dosing vehicle for the office that day) and he was not going to participate without the vanilla ice cream. Thank goodness for the super amazing nursing support staff. They went to the cafeteria and bought Big Monkey a tiny vanilla ice cream. It was the good stuff too, not random hospital brand. So ice cream in hand, Big Monkey updosed to 25 peanuts without issue, and we were in and out of the office in 2 hours with instructions to return in 4 months.

So we took off for a little vacation time and some kid centered fun at the beach. We had a blast, but sleeping in different places is not Big or Little Monkey's easiest task and we lost several hours of sleep over the course of a few days. Then on day 4 of 25 peanuts, Big Monkey had a reaction. Thankfully, it was mild. Just hives on his chin within 20 minutes of his dose one morning, but it meant a 24 hour round of several medications to keep everything in check. Too bad he hates the taste of one of the medications. The way he acts about it would make you think I was forcing gasoline into his mouth. So between this reaction and the one in Hawaii, I learned that Big Monkey does not dose well when he is exhausted and stressed.


This event also brought up two other important thoughts in my mind. First, Big Monkey is still allergic. He has not "just outgrown" his peanut allergy like some may think as we breeze through this process relatively uneventfully. Nope, he is still very much allergic. It is a good reminder to stick with our dose and only our dose until we get clearance for more because anything over could possibly be too much for him to handle. Eventually he'll be at such a high dose that his reacting immune cells will be so saturated that they will no longer react, but we aren't there yet.

My second thought was about other OIT protocols and their end goals. Basically, there is a discussion within the OIT parent/patient community about why some protocols differ so much and is there really a difference in the level of protection that each protocol offers. After this last reactions, I firmly believe that the answer is yes, different protocols offer different levels of protection. There are a few offices out there that take patients up to 3 peanuts a day. They consider this "bite proof." At bite proof, if you accidentally take a bite of something that contains peanuts, you are very unlikely to react and will be protected. This is great as it eliminates contact reactions, but could you eat the entire peanut butter cookie and be safe? Probably not. Then there are other protocols that take patients up to about 12 peanuts a day (some are 12 once a day and some are 12 twice a day I believe). These protocols then have patients remain on that dose for an extended period of time (some for up to a year). Then they are required to pass a 24 peanut challenge, which basically means they need to consume 24 peanuts at one time without any reactions. Most pass and then some of the protocols allow for free eating after the patient passes the challenge. Here is where I struggle with this one being the best protocol for "free eating" of the allergen. Big Monkey essentially passed a 24 peanut challenge because he at 25 peanuts in the office with zero issues, and I mean zero issues. Then he ate 25 peanuts every day for the next 3 days, again with zero issues. Then on the 4th day he ate 25 peanuts and had a very visible reaction. So on the 4th day he failed the 24 peanut challenge. So even though Big Monkey "passed" a challenge, he was not really fully safe for free eating (reality is 25 peanuts is a whole lot of peanuts for one serving, so maybe it's not such a big deal for most consumption?). There have been a few reports of patients (not Dr. R's patients) having full anaphylactic reactions even in maintenance (so after they pass the challenge) and people are puzzled, but maybe this is why. Maybe the 24 peanuts is just not a high enough dose to desensitize the body enough to freely eat the allergen. Dr. R seems to agree, and his protocol reflects this.

25 peanuts made into a cluster is the size of my palm
Even at 25 peanuts, Dr. R made it very clear that we should still be asking about peanuts and peanut oil at restaurants. While he chuckled in amusement at my story of how I sometimes now forget to ask about peanut oil until the fry is posed to enter my son's mouth (freeze kid! I have to ask first!), he reminded me to still ask. He also reminded me to not go above our 25 peanuts. You see, Dr. R's protocol will take us to more than twice the amount we are currently on. The final and graduating dose is 60 peanuts. That is the challenge we have to pass. Some perspective on just how much that is? That is 3 tablespoons of peanut butter. Using 1-1.5 tablespoons of peanut butter will make a very gooey peanut butter sandwich. I doubt that Big Monkey will encounter a meal very often that contains that much peanut! In Dr. R's experience, there is also the benefit that such a high amount does not need to be consumed every single day. This couldn't come at a better time since Big Monkey has basically decided he doesn't really like peanut butter or peanuts unless they are in ice cream (really??). So not having to dose with a certain number of peanuts every day is going to be a lifesaver. He will still need to consume peanut products several times throughout the week, but a peanut butter granola bar or a peanut butter cup is far easier to choke down than 25 or even 60 peanuts! That is hopefully where we will be come October. Just in time for Halloween. So maybe this year he can go trick or treating and actually eat any candy out of his bag. And maybe for once he and his little brother will not shed tears because they accidentally picked the peanut butter cup and mommy will have to take that away when they get home. Yes, that has been the reality on Halloween in past years. Not this one if everything goes as planned.

The freedom to eat any ice cream treat from the zoo that we wanted (that's ice cream frozen into a mango)
For now, we choke down the 25 peanuts and occasionally add sprinkles to our peanut butter on toast to make it more palatable.

Do-it-yourself sprinkles to take the dislike out of peanut butter on toast in the morning
I must say that even though we haven't "graduated" and we are not clear to consume any peanuts beyond Big Monkey's dose, we have gained so much freedom already! It has been life changing in such a short amount of time. Well, maybe 20 months wouldn't be considered a "short" amount of time to some (Dr. R's average for OIT is only 12-14 months, so apparently we're "special"), but in the grand scheme of life, this has been short. This summer Big Monkey attended his first summer camp (sports camp) and had a blast. He also attempted ranch camp, but only made it for 2 days out of the week because he picked up some cold germs from sports camp the week before and colds still hit him hard. It is still great progress. 

Snack time at sports camp!
Otherwise, we've been enjoying a rather uneventful and wonderful summer full of swimming, 

Captain Drench 'em
We even went camping where it felt like we were in the middle of nowhere. 

Until next time...