Thursday, October 15, 2015

Summary of our journey

As we approach our final peanut challenge, I have had many people within the allergy community asking questions about our start, our journey, reactions, when were we cleared for cross contamination, and more. So I decided a week out that I would post a sort of summary entry with all the information. I cannot post super specific details (like how much we updosed each week), or anything like that for safety reasons (we don't want anyone attempting this at home on their own), but I will do my best to clearly outline what I can. So here we go!

1 year - diagnosis
Our food allergy journey began in December 2009 just before Big Monkey turned 1. We noticed red rashes around his mouth anytime he ate eggs, so we had the pediatrician test him. Sure enough, he was positive for both egg and peanut. Thankfully, all other foods were negative. The next year passed uneventfully and by January 2011 (age 2), he had outgrown his egg allergy but his peanut blood results were rising. We did well until September 30, 2011 when Big Monkey experienced his first anaphylactic reaction. We were having lunch and a playdate at a friend's house and he must have touched some peanut residue somewhere on a table or chair (all cleaned, so the residue was unseen and slight) and his lips swelled and his chin and neck broke out in hives. At the time because no breathing was involved, I did not think it was anapyhalxis and did not administer the epi-pen. This was a major mistake on my part. Luckily, benadryl took care of his symptoms and he was fine, but the truth is that this reaction was FULL BLOWN ANYPHYLAXIS and the epi-pen should have been given immediately followed by a visit to the ER. Big Monkey was 2 years, 10 months old.

Just a few months before his ana reaction
All considering, only having to use the epi-pen once in almost 3 years is amazing. There are many allergy suffers that have to use their epi-pens multiple times a year. Some even more often. Even more amazingly, we made it another year after with no need for the epi-pen. There were mild unexplained reactions that we could never find a reason for. Big Monkey always seemed to be developing small patches of hives somewhere on his body or itching his skin until it bled. All of this finally led to the beginning of our OIT journey in the fall of 2012 (Big Monkey was 3 1/2).

2012 - he sure looks like he wants us to do something
Sometime that fall Daddy Monkey and I started talking about how there must be something that we could do about his allergy. It couldn't possibly be true that there was nothing out there to help, but it sure seemed that way. Then one fall day I stumbled across a Facebook group called "Peanut Anaphylaxis Cure" (still exists at I thought, hmmm, ok, this group might be full of a whole bunch of crack pots, but I guess there is no harm checking it out. I can always leave. This turned out to be the best gamble of my son's life. The group was in fact not full of a bunch of crazy crack pots (well, some of us in the group just may admit to being a little crazy). It was a group of well informed, researched individuals embarking and exploring this new "treatment" option for food allergies. Of course, it wasn't really "new," but as far as being widely known, it was. So I stuck around and listened to everyone chat. I asked a few questions and I read. I read books, articles, reviews, scientific publications. I searched the literature back for years, and then I calculated. I calculated the risks, the benefits, and the costs. Then I brought all this information to my husband (who knew I had found the group, but did not know the details), and I said, "hey, I think we should consider doing this." I thought for sure I was going to have to whip out a PowerPoint presentation of all the information with full references to scientific data, but after one conversation his response was "let's do it." Huh?? Really?? The mom panic set it. "Are you SURE?" Yup, he was sure.

At that time our choices were Dr. Baker in Lake Oswego, OR or Dr. Wasserman in Dallas, TX. Unless we wanted to fly all the way to Raleigh, NC (which I did consider briefly). Sadly, with weekly or bimonthly updoses, both of these practices would have required a lot of flying or me relocating alone with boy boys for 6 months to a year. Baby Monkey wasn't even 2 at this point, and I just could not figure out how I would make living alone with the boys for that long work. So we opted to wait until Big Monkey and Baby Monkey were older and hope that maybe someone closer would start offering OIT in the meantime. While we waited we visited our local allergist and had Big Monkey retested. His peanut IgE numbers were now off the charts. I spoke to the allergist about OIT as I had heard from the grapevine that he had once considered offering it. He was not considering it at the time and said he had higher hopes for the patch or FAHF-2 (herbal treatment). However, he did assure me that "if we didn't have a solution for Big Monkey by the time he was 10, he'd be shocked." By the time he was 10?!? So we'd have to live another 6 years in fear and limiting what we could and couldn't do. Yay!

early 2013
To my utter shock and surprise, a mere 2 months later I got word from the group that there was in fact a California doctor offering OIT. His office was being contact to see if they were open to new patients and then the contact number would be released. In March 2013 the contact information for Dr. Randhawa was released, and I am pretty sure I called within 24 hours of obtaining that number. This doctor could not have been in a better location considering we have family in the nearby area that could help with Baby Monkey while I took Big Monkey in. I could not believe our luck.

At one of our 2 consultation visits in 2013
We had to wait 2 1/2 months for our consultation appointment. That seemed like forever, but looking back, we had it easy! Today people are in a "wait pool" that was developed after the wait list for Dr. Randhawa filled up. The wait for an appointment today is more than a year. The clinic is expanding by adding a new doctor (welcome Dr. Parrish!) and creating a new center for rare and orphaned diseases ( to hopefully cut down on this wait, but that just speaks to how good this team is and how amazing this life change is. We feel lucky that we became patients when we did.

peanuts! 2014
So our journey began and here is the breakdown of our appointments and progress:

May 2013 - Consultation appointment. We went over Big Monkey's history, had an exam, talked about the process, and ordered lab work.
July 2013 - follow up appointment. We reviewed the new blood work, started SLIT for environmental allergies, and made a plan.
December 2013 - OIT DAY 1: Big Monkey took his first bite of peanut flour. We stopped with Big Monkey turned green and complained of a stomachache. We were sent home on 65mg of peanut four (much, much higher than most people/protocols).
December 13-December 25, 2013 - Big Monkey displayed repeated delayed reactions of full body hives in addition to severe stomachaches for an hour post dose every day. We decreased our dose to 32.5mg and held steady until he stabilized. Christmas Day was our first reaction and medication free day, although his body and mind were exhausted and his attitude and mood were horrible (can you blame him? That's a lot for the body to go through). Somewhere in here we switched from dosing at lunch to dosing in the morning as well.
January 1, 2014 - Big Monkey turns 5 and has his first vomiting reaction 20 minutes post dose. Dr. R determines it was likely from not eating enough prior to dosing. We had to hold steady on this dose though until we had a full 2 weeks with zero reactions.
January 16, 2014 - All had gone well to this point, so we increased our dose at home using a "split dose" protocol where we added a second dose to our day. Yeah, welcome 2 hour rest periods twice a day! That was not so fun, but we did it for the good of Big Monkey and to make it not so hard on his body.
March 12, 2014 - We increased our dose at home every 2 weeks until we went back into the office on March 12. At this point we updosed to approximately 1 peanut in office. We were sent home on a dose lower than this. We also received clearance for cross contaminated items, which also meant we could probably worry a little less about contact reactions.
At this point you can assume that we updosed approx every 2 weeks at home in between appointments. There were some times where we spent more than two weeks on a dose because of illness or just because we weren't able to get an appointment for an extra week or two.
May 27, 2014 - In office updose to 1 gram. The plan had been to challenge higher, but Big Monkey had a cold and ear infection, so we chose a much smaller increase from our current dose. This was the first time Dr. R present Big Monkey with a real peanut and asked if he wanted to eat that. Nope, no go, wasn't going to happen. I believe this was also the appointment where we got to drop our split dose and return to one dose per day.
June 2014 -  We feel safe enough to fly across the ocean to Hawaii for vacation! Had a mild reaction while we were gone. Big Monkey's first dose related reaction since the first two weeks. After a fire alarm was tripped, Big Monkey spent most of the night awake and anxious. So he dosed exhausted and highly stressed and his chin broke out in itchy hives.
September 2014 - We had to delay our August appointment by a few weeks due to a stomach bug. Updosed in office to just under 2 grams. Very uneventful.
December 2014 - 1 YEAR ANNIVERSARY! Big Monkey was presented with peanuts again and after much coaxing and begging and some bribery, he finally ate a blue peanut M&M. He actually ate 6 peanut M&Ms.
February 2015 - in office updose to 10 grams. This is our step 1 "maintenance dose." So we stopped increasing every 2 weeks and instead stayed steady on 10 grams. Rest period and all other rules remain in effect. We were given permission to wean him off his allergy medications (antihistamines, nasal steroid, etc). We dropped one but decided to wait on the others due to increased environmental allergy symptoms he was displaying.
June 2015 - We return to the office to increase to our second maintenance dose step of 15 grams. Big Monkey experiences his second dose related reaction after 4 days on this dose. Again, he was overly tired and possibly stressed from being in a new environment. He again broke out in hives within 20 minutes of his dose. Everything returned to normal the following day. The rest period and all other rules still apply. We slowly worked on dropping the remaining medications and had Big Monkey fully weaned off before the end of September.
October 2015 - DONE! Oh wait, I'm getting ahead myself.

So in a nutshell, that was our journey in creating peanut tolerance for Big Monkey. Thankfully, we only have one allergen to deal with. This was a long process for us. Of course, the journey is different for every single person. We have friends that are also seeing Dr. R with multiple allergies and they have been able to complete far more allergens in a much smaller time frame. There may be allergens that they reach in the future that take longer, or maybe not. You cannot compare yourself to someone else in this process (and Dr. R really does not take that comparison approach either!). Everything depends on your body and your situation, but in general, this is often the pattern that OIT follows for all. Updoses on some regular schedule, a few hiccups, a few setbacks, and bounds forward. What matters most is the end goal. A normal, allergy free existence.

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!