|1 year - diagnosis|
|Just a few months before his ana reaction|
|2012 - he sure looks like he wants us to do something|
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!
|At one of our 2 consultation visits in 2013|
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.