Wednesday, May 25, 2016

Time for an update!

So we've been busy since October. Doing what? Living life of course! Our journey is still not quite over, but we sure have been enjoying the freedoms that we have gained thanks to Dr. R.

From our last trip in April
The 2015 holidays were quiet this year, but very enjoyable. Most of winter could be described this same way. We did introduce the monkey boys to snowboarding this year and they LOVED it! Little Monkey is a natural and a bit of a terror on the hill. Watch out when he's coming down because he just goes straight down. Big Monkey is a tad (understatement) more cautious. What a wonderful thing to do as a family, and hey, after our last trip I made peanut butter and jelly sandwiches in the car for on the way home since we boarded through lunch and were starving. Big Monkey opted for an almond butter and banana (he still does not enjoy the taste of peanut much), but I made them all without a sink and soap and water to scrub my hands. That would have spelled big trouble two years ago.
February? Trip
Spring has been a little busier, specifically this past month. We decided about 8 weeks ago that we were going to take a week long trip to Disneyworld! Woot! Nothing like trying to plan a trip just 8 weeks before you leave. Better than our 3 week planning we did for our Hawaii vacation two years ago, lol. Apparently, we don't plan ahead when it comes to vacation.

My Monsters
The trip was great. We opted to fly Southwest because prices and times were so much better than the other airline options. I am still a major JetBlue fan due to clean planes and great service, but sometimes they are just not convenient for where I want to fly. Southwest used to be a thing of my nightmares before. We've flown with Big Monkey on Southwest once sometime way back when he was like two. We used to have to board super early, wipe everything down, make sure he still kept his hands to himself, request no peanuts be served and pray that no one opened their own bag of peanuts next to us (or behind us and then reached over the chair and brushed his head as they got up to use the bathroom). Nightmares I tell ya. The one time we did fly, Big Monkey still have a hive on his face when we landed. Just one hive, but it told me I had missed something. He had still touched something. So we stopped flying Southwest until this trip.

This trip, we boarded with our boarding group and I did not wipe anything down. The boys still sit in their car seats when they fly, so touching stuff is still minimal, but I no longer have to worry. They served peanuts. We didn't ask for an announcement. In fact, I didn't even notify the airline of his allergy. We were just passengers on a plane and nothing more.

At Disneyworld we ate anywhere we wanted. I must say, Disney is and always has been fantastic with food allergies. I still had to notify restaurants of my shellfish allergies so that I could identify what I could and couldn't eat, and the allergy menus are so detailed and all allergy dishes come marked and are cooked separate. They have separate prep boards, bowls, etc. There were a few places that we notified them of his peanut allergy more because we needed to make sure we knew WHAT he was putting in his mouth, not so much that he couldn't eat it. I just try to keep track of his consumption, especially in a new place on a different schedule when I might need to be watching for his body to react unusually. He ate what he wanted, when he wanted, and where he wanted though. It was fun and delicious. Yes, I went to Disneyworld to eat food, lol.

Kylo Ren at Hollywood Studios - Little Monkey was not 100% sure
The boys had a blast and loved all the parks. Strangely enough, Big Monkey still remains convinced that Epcot is his favorite park. Mommy and Daddy Monkeys vote for Animal Kingdom (that place is GORGEOUS and the safari ride is a blast!) and Little Monkey stands firm that Magic Kingdom is bar far better than the others. I don't blame him (although I still say Disneyland is better than MK - no one shoot me).

Seriously, Big Monkey loved the culture and garden festival at Epcot (history geek)
Now we are home and getting ready to head into summer, if summer weather ever chooses to grace us with it's presence. I hear from friends that summer made a brief appearance while we were gone. Then it disappeared. Boo. I want to use the pool.

Peanut has been going well. Overall, we have gained a lot of freedom. It hasn't been a 100% smooth ride. In fact, we have seen a few reactions that have been our scariest to date. They still pale in comparison to what some allergic individuals experience, but still a reality check that we really needed OIT. Since graduating, Big Monkey has had a handful of mild hive reactions. Most have been about 3 hours after consumption, with one or two happening immediately. All easily resolved with some antihistamines. Two reactions in particular scared the pants off me (well, the first one did. I was more familiar with it the second time it happened).

Friday, March 7 was like any other ordinary day. Daddy Monkey went to work and the boys and I started on our day with breakfast. Friday was 60 peanut day, so Big Monkey ate breakfast and then had his peanuts. This particular day he had half his 60 dose in the form of peanut butter on toast and the other half as peanuts. He ate his peanut butter on toast. I looked at his face to find some tiny hives around his mouth. I thought, crud. He's only half done. I'd seen these little tiny hives with peanut butter before. Sort of like it sticking to his skin irritated his skin. So he stopped eating and I wiped his face and hands with a wet cloth. By the time I put the cloth back down at the sink and came back, his hives were almost gone. My mommy gut was sort of screaming at me to not have him eat the other half of his dose, but my brain said he's done it before and the hives are gone so just get it over with. Yeah, big mistake on my part. I will now always listen to the mommy gut. He ate the other half and was fine.

Until 1.5 hours later. Big Monkey comes in from the other room where he was playing Legos and he says he has a funny whistle and something is wrong with his voice. His whistle was a slight wheeze and his voice was cracking. It sounded like one might sound when they have a cold and have phlegm stuck in the throat preventing him from speaking clearly. Then he coughed and it sounded wet with a rattle. Again, like a child might sound when sick. I could see the worry in his eyes. He knew something wasn't right. I told him I needed to give him his medications and he agreed (he never agrees to those meds so easily because they taste terrible). I knew he didn't feel right then. So he had 2 antihistamines and an oral steroid. The epi pens stayed in hand and I reached out to my friends that are also fellow patients. They waited with me as I waited to see if I would need to epi Big Monkey for the first time. I wouldn't have hesitated to use the epi if breathing was involved, if another symptom appeared, or if the meds hadn't started working almost immediately. For most people without the extensive action plan we have, I would say this would be a case to use the epi pen immediately. We sat in front of the TV for the next 2 hours while I waited and watched. He was fine.

We have no idea what triggered this reaction. He had eaten his 60 the week before. He had eaten peanuts almost every day that week (not a lot, but a good amount). He was not getting sick. He didn't appear to be tired (but then again, this is the kid with insomnia so I can never be sure he's not tired). Dr. R instructed us to make sure he was getting at LEAST 8 peanuts each day and to try to eat way more than that most days. So we did our best to increase the amount daily and make sure that we didn't skip doses. The next weeks went fine. In fact, everything went fine until after our trip.

I will admit, traveling to another time zone and running around theme parks for 5 days in the Florida heat made dosing a little difficult. Since Disney is so good with food allergies, I noticed that peanuts were not exactly everywhere, especially not in forms that Big Monkey would actually eat. I took peanuts for him to eat every day, but mornings were so hectic getting up, getting breakfast, and getting out the door that I often forgot. Hey, I even left my purse in the room 3 different times and had to go back for it (it had the med kit in it, so no, I couldn't just go without). Then I'd remember, but we didn't get back to the room until late and Big Monkey was exhausted. We know how not well he does with peanuts when exhausted, so no way was I going to give him peanuts right before bed exhausted and potentially ruin our vacation.

So I knew when we got home that we were a little low on our consumption. I spent the next few days trying to ramp his consumption back up to larger and larger quantities, not doing this on the day my mom had to watch him alone while I was gone. He did fine with all those doses. So on Sunday I gave him his 60 (actually a few shy of 60, but close). He ate them with a pout. He was fine until 3 hours later. He had gone out into the man cave with Daddy Monkey. He was calm, but he was out vacuuming up the man cave/shop. This was probably not a good activity post 60 after a busy week. I have a feeling it led to allergy overload on top of Big Monkey still being slightly off in his sleep. He came in with 5-6 hives over various parts of his body. These were not tiny, but also not huge. About the size of a smaller mosquito bite. That's bigger than his normal hives, but not in epi-pen territory yet. I gave benadryl and sent him for a shower to get the dust bunnies off. When he got out of the shower, the wheeze and wet cough had set in. The hives were still there. I added the second antihistamine and the oral steroid and we waited. Things improved quickly, but poor Big Monkey was all drugged up and sort of out of it for the day (and the next day too really).

New instructions were to make sure that we are really pushing his body between the doses of 60. We need some major variability in amounts. So we will now do small amounts and large amounts. Basically, we will sort of be adding additional exposures to 60 peanuts. This is not the same result for everyone. Remember that Big Monkey still has a long way to go to be "normal." His IgE is still very high and it's going to just take time and exposure to bring that down. The lower it gets, the less sensitive he will get and the more variability and flexibility we will get. It's sort of like we are still going through OIT and teaching his body to calm down even though we are not increasing his doses anymore.

Reactions and all, it is still worth everything we have done. He pretty much never reacts to smaller doses or cross contamination. He can eat a peanut butter granola bar with no issue. He can be around other people eating peanut butter and jelly sandwiches. He could accidentally pick up his friend's peanut butter and jelly sandwich and eat the entire things instead of his almond butter sandwich (a scenario that is 99.999% not likely to happen since Big Monkey hates sandwiches, but still) and be fine. Sixty peanuts is approximately 3 tablespoons of peanut butter. That is a LOT of pb to fit onto a sandwich. Like make me gag when I try to eat it amounts, in my opinion. So we are still very safe post OIT. One day maybe his IgE will hit zero and then he won't have to worry so much about how many peanuts he eats and when. Some of Dr. R's patients (those that have been with Dr. R for a very long time and have IgE of zero) only dose once a month with normal consumption in between. So there is still progress to be made. Until then, we are still thrilled with our decision and the freedom we have gained.

Until next time!

Animal Kingdom - Mt Everest 

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 https://www.facebook.com/groups/peanutanaphylaxiscure/). 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 (www.TPIRC.org) 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.