Big changes

I know my pattern seems to be to only post twice a year, but up until this month I wasn't sure what to share or if I even should share my thoughts as I debated some big changes. Now that I have made my decisions, I feel like I can honestly share what was going through my head as well as what we decided.

You see, back in November I started second guessing our decision to pursue peanut OIT for Big Monkey. At that point in time he had been having major reactions several times a month for over a year and a half. I began to feel like not enough was being done to help us stop these reactions and get back to a normal and stress free life. I was beginning to feel a little brushed off and felt I was basically being told to wait it out, but what parent can truly spend years watching their kid have a monthly anaphylactic reaction (or worse several a month). The longest period Big Monkey had gone reaction free was 2 months. 8 weeks. That was it. I was terrified. So terrified that I made a consult appointment with another doctor for mid January.

This became all to common in our life and was scary. Photos can't even capture how terrible his face looks mis reaction. 

Then Big Monkey had another huge reaction and I panicked about leaving the doctor and plan that already knew my son's history and I backed out of the appointment the Monday before. I went back to waiting it out until the second guess snuck back in. Then one evening after a long day of snowboarding and a long drive back home, we forgot Big Monkey's inhaler for the evening. He did get all his other usual medications and had taken his morning inhaler, but we totally forget the evening dose. The following day he had another big reaction. Our doctor's response was that he needed to be on all his medications all of the time and that was the cause of the reaction.

My thoughts were that this was insane. I mean, I am a mom of 2 busy boys and wife to a busy husband that spends long hours at work. We balance a busy household and often travel various places for long days. We do our best to remember it all, but this is real life and sometimes a single dose of inhaler is forgotten or a Claritin is missed. These small mistakes once (we're not talking a week of missed medication) should not mean my kid goes into anaphylaxis. These mistakes should not leave me watching and wondering when the day my kid will die because somehow the medications don't work. Kids die of anaphylaxis. It happens. I felt that having 12 reactions a year significantly increased our risks of that tragic day happening, not to mention wondering what kind of damage all of this was doing internally to my son.

So I reached out to knowledgeable food allergy treatment friends and they gave me a few leads on local doctors as well as their opinions of them. After several conversations, I decided to reach out to one provider and she agreed to call me and discuss my son. I was a nervous wreck. I didn't know if I could trust her and her process any more than the current one we were on. I didn't know if I was making the right choice or the biggest mistake of my life. my husband assured me that we really needed someone more local. If we we're potentially going to struggle for many more years, then we really needed someone just down the street. Someone we could just call up, make an appointment and go into on any day of the week.

So I had that phone call and she was amazing. I of course still had my reservations (change is scary), but I felt good. I felt more hope than I had in a year. Big Monkey was excited about what we heard. So we made the appointment and started the process. It took us approximately 4 months to get everything going, settled and to be in a good place, but we are here. I officially left our previous OIT doctor in late May/early June and much has changed for Big Monkey.

So prior to this change Big Monkey was consuming 30 peanuts 3 times a week as well as free eating in between. He was also being treated with 2 separate environmental allergy treatments, an inhaler, nasal spray, and daily antihistamines. We overhauled about half of this plan with the new doctor.

First, we dropped the environmental allergy treatments of SLIT and Grastek. We kept the inhaler, nasal spray, and antihistamines with the thought that his body was just totally overloaded.

We dropped his peanuts down to 8 but went back to having them every single day (there are some exceptions to this). He also went back to having a 2 hour rest period post dose. Seems like a step backwards, but if it means no more reactions, then it is actually a step in the right direction.

Sadly, Big Monkey reacted to the 8 peanuts 2 weeks in a row in late May. So I made another appointment to go in and adjust his plan. Our new doctor didn't bat an eye and loved that I came in to make changes (did I mention how much I love them?).

Big Monkey now eats only 3 peanuts a day. THREE. He is of course thrilled since he hates them. He has also stopped needing all the sugar and junk he was consuming with the other peanuts. This is a huge deal for us since he also has familial high cholesterol and really does not need to be eating that kind of stuff all the time. So far it has been 5 weeks since our last reaction. Obviously, we have a long way to go before we know for sure if this new plan is working (especially since grass season just ended a few weeks ago here), but I say this is going the right direction. I have noticed other minor improvements with him that I didn't really realize were occurring until they went away.

Needless to say, I am super happy with my decision. It took me a long time to get to this place and make it happen, but it was the right call. Hopefully this will be our last doctor and our last protocol, but I won't heatitate to adjust things in the future if we need to. Big Monkey seems to be a bit unique and we will do what we need to.

Quitting is apparently not an option. I have offered it many times to Big Monkey as I know I am exhausted by all this. He refuses every time and practically cries at the thought. He wants to go to birthday parties and eat cupcakes, get ice cream from the ice cream shop, fly on airplanes, go to Europe,and eat at restaurants. He wants to do all of these things without worry and without anyone having to make special accommodations. He only wants to request no peanuts in his food. I get that. He is a wise 9 year old. And handsome too.

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.

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!

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...

September to February in a Nutshell

A lot of time has past yet again, sorry. Things have been a little bit busy since September, but all is good! No news is good news around here. Although when the news is really good, then I post! We have hit that really good news stage. More like life is really changing stage.

We did a whole bunch of stuff between the September post and our next updose appointment. Daddy Monkey and I ran a 5K through Daddy Monkey's work.

I fractured my foot during said 5K (possibly before, but that was the day the pain became so bad I could no longer walk or bear weight on my foot). Fun stuff! I spent 9 weeks in that boot, and it has taken me almost exactly 5 months to get back to running 3 miles (and I'm still a half mile shy of that goal, really). Boots are sexy even if they don't match, right?

Then there was Halloween. The boys carved their own pumpkins all by themselves, well sort of. They got tired about half way through and had me finish. We carved them the weekend before Halloween and they rotted within two days. So I had to carve them again the morning of Halloween. I carved a total of 5 pumpkins this year. Yeah.

But the excitement was worth it, and yes, Daddy Monkey is a man being eaten by a shark.

There was some school in there somewhere too. We have done lots of projects, learned a lot of new skills, and tried out several new curricula. Big Monkey is just a few short months away from completing kindergarten! I think we have finally decided what Big Monkey likes the best and what we will likely use for next year. We are currently trying out Time4Learning (Big Monkey especially loves working on the computer), All About Reading (I finally found a reading program the boys are thrilled to do!), All About Spelling (hoping it is as well loved as the reading version), R.E.A.L. Science Odyssey (Big Monkey would use any science program really), and then maybe History Odyssey.

Even the toys get in on the learning fun. We were building geometric shapes and Dragon decided to roast marshmallows.

Now on to OIT news, as many are reading just for that. Since my last post there have been two updoses with Dr. R. The first happened at the beginning of December. Almost exactly one year after our start date, Big Monkey ate his first real peanut! We were on peanut flour before that increase, so I'm not sure exactly how big the jump was, but he went home eating 6 whole peanuts. It was a struggle to convince him, even with Daddy Monkey and Little Monkey along for the visit. He made all three of us eat a peanut, and then he still rejected them. So Dr. R broke out the big guns and brought in the peanut M&Ms. Who can turn down a peanut M&M? Apparently Big Monkey can. We finally just had to nod and agree that they tasted just like regular plain M&Ms. Yes, baby, just like plain M&Ms, uh huh. I don't lie to my kids, except this time. We were desperate, and we knew he would like them just fine if he actually tasted them. So he finally picked his favorite color, blue, and ate it. His eyes lit up like a kid in a candy store. "These are really good!" Problem solved.

Oh wait, there was more life that happened between the December and February updoses. We ran home to quickly celebrate Little Monkey's 4th birthday and prepare for spending Christmas with family in the mountains.

We enjoyed a lovely white Christmas.

Sadly for us, our beloved Papa Monkey went home to be with God on December 26th. This was the last day we spent with him, and we are forever grateful that he looks so happy and that we got these precious moments with him.

We again traveled home to squeeze in Big Monkey's 6th birthday before returning to Grandma Monkey's house to help plan Papa Monkey's services and lay him to rest.

On January 8th, we said goodbye to a wonderful man and one of the most important people in my life.

Other than battling what we think was influenza in early January, the rest of January and beginning of February was relatively quiet. We all really needed the downtime at home.

Then on to this week! We made the long drive again for what we hoped would be a very important updose. Dr. R did not fail our expectations on that one. We went into the office and increased to 10 grams, or approximately 15 whole peanuts. Thankfully, Big Monkey gladly ate all 15 with a small helping of chocolate ice cream (thank you Dr. R for having a lot of big guns in that hospital peanut kitchen!). No, there are no photos of this because when I am with Big Monkey in Dr. R's office, my main concern is having a safe and successful updose as well as talking to Dr. R about the future and our plan (it seems to change every time we go in, so this is important).

What is so important about 15 grams? Well, it is considered our "maintenance dose." This means we will no longer be doing bimonthly updoses. We will stay at this dose for about 3-4 months to let his body adjust. It was still a huge jump from where we were at, so we will be watching him closely for the next few weeks, but if all goes well, then things start to change. In one month, I can begin to wean Big Monkey off one of his daily antihistamines. His nasal spray and second antihistamine should soon follow. That is the biggest change for now. It seems like something small, but a medicine free child would be absolutely wonderful! I think the best quote of the day was when Dr. R said (in response to my asking if we could dose in peanuts, m&ms, peanut butter, whatever), "Sure. If you want to order Thai food and have that as his dose, go for it. Just don't let him consume more than his current dose." Really?? Talk about freedom. Of course, even bigger changes are coming this summer.

So if the next 3-4 months are uneventful and we have no reactions, then we will return and challenge to a higher dose. There may actually be two more challenges involved, or we may just jump to the higher dose at the next visit. I believe it all depends on what happens over the next few months. These challenges are similar to the updoses we have been doing all along, except they are much bigger jumps with no small increases in between. Ideally, the 3-4 months on this maintenance dose will prepare Big Monkey's body for the larger dose  (yes, I am purposely leaving the specific grams off of this public post for a number of reasons).

Regardless of which of the two doses we reach at the next visit, the next change will be losing the rest period following our daily dose. Currently, Big Monkey takes a dose and then must remain calm for 60-90 minutes. This means not doing anything that gets his heart rate or body temperature up (no running, jumping, tantrums, hot showers, or outside in the heat). Most of the time we complete our school work during this period of time. It's not much of a problem during the school year, but come summer, it will become a bigger issue. The freedom we have gained so far means that Big Monkey has a lot of plans this summer (i.e. camp) and it will be nice to not have to wake him up at 5:30 a.m. to dose in time to complete the rest period before camp starts. I know Big Monkey is looking forward to not having this restriction any longer.

When we hit the larger dose (I am so hoping it is next time), then things change yet again for the better! Here is a recap of the accomplishments we will have made at that point: no longer contact reactive, no longer need to worry about cross contamination (so items made in the same facility, on the same equipment), no longer doing bimonthly updoses, and no longer observing a rest period. Basically, other than consuming a specified amount of peanut every day and avoiding any additional peanuts, Big Monkey will be like a regular non-food allergic six year old. So how can it get better than this? How about we make him even more like a regular non-food allergic six year old by removing the need to eat a specified amount of peanut every day and by saying he's allowed to eat peanut products at will? That's right, we're talking full inclusion into his diet.

So after passing the large challenge, Big Monkey will be required to eat that dose once a week. That's right, once a week! Then after that he will need to eat something like a granola bar or two somewhere throughout the rest of the week. I believe he will also be allowed to eat any other peanut products that he wishes (maybe not on the day that he has to consume the giant amount of peanut protein, but trust me, even the biggest peanut butter lover would not want to consume much more than what he will need to eat in that one day). Just thinking about this makes me want to tear up with joy. My son at age 6.5 years will finally be allowed to eat ANYTHING HE WANTS!

He will always be required to carry an epi-pen (likely for the rest of his life), but he will eventually have no memory of the days where he couldn't eat the cupcake at the birthday party, gather the Halloween candy from the pinata, eat at a restaurant because it uses peanut oil, enjoy an ice cream because they use the same scoop in all the barrels, fly on a plane without wiping down every surface first (although I may still do this as I have now seen first hand that planes are gross), or leave the park because some kid decided to consume a peanut butter sandwich on the play structure. He will never be bullied because he is the food allergy kid. He will never have to ask a girl to brush her teeth before kissing him (or ask if she's had any peanuts in the last 12 hours). He will not have to live constantly looking over his shoulder wondering if today is the day that somehow he might slip up or that something might get by him and send him to the ER, or worse. It sounds like a doom and gloom outlook, but the truth is, it happens. But hopefully all this means that from here on out, it will never happen to us. Instead, I can worry about him deciding to jump off a roof, ride a motorcycle, go cliff jumping, or some other equally horrifying to your mom activity. And today, I am thankful for that possibility and wish that every single food allergy parent out there could have the same thing. Hopefully one day, they will, and we will have been a very small part in the large number of patients needed to make this reality for everyone.

Congratulations, Baby! You are the bravest little person I know and February 17th, 2015 marks the first day of entirely different options and opportunities in front of you.

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Battling Cold Season

Cold season peaks in September, and it has been kicking our butt since July (well, maybe even as far back as May). When we last visited Dr. R in May, Big Monkey showed up at the office with a cold and raging ear infection. Thankfully, we were still able to increase our dose at least a little. I could have never predicted it was the start to a somewhat challenging summer in the sickness department, especially since summer is usually our healthiest time.

Picnic lunch during our first week of school

June went well, but July brought around cold season in full force. Big Monkey started with some GI (gastrointestinal) issue. It settled in just a few days after a dose increase, so we thought it may have been related. Dr. R had us cut our dose in half for a few days (3 days? 5 days? I can't remember now). It seemed to solve the problem, then Little Monkey (we are now referring to him as Little Monkey instead of Baby Monkey out of respect for the fact that he really dislikes being called a baby anymore) came down with the same GI issues about a week after Big Monkey. Well, thank goodness it didn't set us back any on dosing. We increased back up to our normal dose after the few days at a half dose with zero issue. As soon as Little Monkey was well again, Big Monkey got hit with a sore throat and snotty nose. Really? No fever was involved so we held steady at our current dose and just delayed any increases until he was well. That passed around the house, but was gone in about a week.

I think I managed to keep the boys well for 2, maybe 3 weeks (it is all a blur at this point), and then Little Monkey threw up and spiked a fever. Great, the dreaded fever. I bleached, did my best to keep the boys separated for a few days, and attempted everything to hopefully keep Big Monkey from getting this one. Well, attempts didn't work. Four days later Big Monkey threw up. Thankfully, this was a very mild and very short GI bug. Also, thankfully, Big Monkey got sick at 11pm. So we skipped his dose the next morning and went right back to a normal dose the next day. Unfortunately, this bug hit the week before we were scheduled to visit Dr. R again. So we had to reschedule for 3 weeks later. This was our first delay since starting in December 2013. I think that is a really good track record.

Creativity was practiced while we were contagious and stuck at home. Little Monkey's helmet, shield, chest plate, and sword made from zoobs

Trip to the circus

Dr. R was squeezing us in during the lunch break just to make sure we could get in sooner rather than later, so I became hypervigilant the week before our rescheduled visit to Dr. R's office (can you blame me after having sick kids off and on for practically 2 months straight?). We pretty much isolated ourselves to the house for a week and my poor husband got sent to work with hand sanitizers and lectures about good hand hygiene (he got lectured despite having fairly good hand hygiene). I was determined that we were going to make it to this next appointment and be well when we got there. And you know what? I was successful. Even with a trip to the circus just days before.

Little Monkey at the circus

When Dr. R walked into the room at our appointment, his first words were, so are you guys all well today with a little chuckle (I have to email him EVERY time Big Monkey gets sick so he can advise us on how to proceed safely). I assured him we were well, and even he asked if I had any idea why we had suddenly gotten sick so often. I wish I had the answer for that, but I don't. I partially blame daily swim lessons all summer, but I think that's not the whole answer.

I'd love to say that our office visit was uneventful, but it wasn't. It was a successful visit, but it was a bit challenging. We have hit an amount of peanut flour now where it would be advantageous and a lot easier if we could switch to dosing with whole peanuts (that's right, actual peanuts!). Now remember, Dr. R offered Big Monkey a peanut back in May and he was too afraid to eat it. So I've been talking with Big Monkey about eating a peanut since May. We've talked about what a peanut tastes like (he eats other nuts) and how a the number of peanuts Dr. R would give him is the exact same as the flour he is eating everyday just not all ground up. I truthfully think the peanuts would taste better as the flour has sort of a weird taste. It has a peanut flavor, but with a sort of floury taste along with it. We even set up some bribery (I am so not against bribery in cases like these - this is not an easy task for Big Monkey). A trip to a local natural history museum to see the dinosaur bones as well as a trip to a local ice cream parlor (a first for Big Monkey) was offered. All he had to do was eat the peanuts that Dr. R gave him. Better yet, all he had to do was TRY the peanuts (so put them in his mouth). So even if he spit them out and switched to peanut flour, he would have earned his reward.

Yeah, none of that happened. Instead, there was a fight and a tantrum. This is an emotional journey for us and is difficult for Big Monkey to endure at times. He was all geared up and ready to eat the peanut until he saw it. Then he refused. He also refused the peanut flour in the applesauce and attempted to refuse the peanut flour in melted chocolate. Dr. R was willing to just not updose and give me instructions for later, but considering we drive 7 hours to get there and had already rescheduled, I insisted we work with Big Monkey to accomplish an increase. Afterall, peanut flour in applesauce or melted chocolate is nothing new for him. I was a little surprised that he responded like that at the appointment. Thankfully, Dr. R is a doctor with more patience than I think any other doctor on this planet has (he truly is a remarkable and unique individual). We managed to get Big Monkey to take his dose in melted chocolate. He consumed the equivalent of 2.5 peanuts. He developed a very faint and small rash around his mouth (probably from getting all worked up right before his dose), but it faded within 15 minutes without any medication. He was also exhausted the rest of the day, but otherwise did very well. Success.

We did still go get ice cream as I recognize that this process is not easy for Big Monkey and he needs something positive associated with it. Although, he did not get his natural history museum reward.

We also went home with an updated plan. A very exciting updated plan. We challenged at the office with 1.8 grams. Graduation from the program is 9 grams. Seems like a long ways to go, right? Well, Dr. R thinks that we can reach graduation over the next 3 visits. Amazing news! Of course, it is all dependent on how Big Monkey tolerates the larger doses. My understanding is that 4 grams and/or 6 grams can sometimes cause some issues. I am praying that we paid our dues during those first 2 weeks of this process and that we are now done with "issues." If all goes well, then we will updose to 4grams in early December. Then 6 grams at the next visit and 9 grams at the third visit. Since our visits are usually about 9-12 weeks apart, we have the real possibility of graduating by the end of next spring.

Little Monkey with his ice cream sundae

Of course, this also all depends on how many setbacks we have due to illness this year! I fear that this cold and flu seasons (flu season peaks in January usually) may be a bit brutal considering our summer. Hopefully I will be proven wrong, but Big Monkey cannot get the flu vaccine this year (we have been advised to avoid all vaccines until 4-5 months after completing the OIT program), so who knows what is going to happen. The rest of us will be vaccinated, so hopefully herd immunity will protect Big Monkey this year. Good hand hygiene and avoiding people who know are actually sick will also be in practice here. In fact, we may just avoid crowded places for this cold/flu season to ensure that we have a better chance of completing this program.

So far we do not have a good track record. We were due for another small increase today, but instead Big Monkey woke with a sore throat. Little Monkey has had some terrible congestion for 2 days, so I think it's safe to say that we have been hit by yet another cold this season. I'll take that any day over vomiting though.

First day of school!

PE at our house!

In other news, Big Monkey and Little Monkey started school on August 20! Big Monkey is officially a kindergartener! We homeschool, so it doesn't make a huge difference, but we are enrolled in a homeschool charter program through our state, so there are still things Big Monkey must accomplish. So far he is rocking his studies and enjoying most of it. Little Monkey is technically a preschooler, but often insists on doing the same work as Big Monkey. So he's a little between grades. He's too advanced for the pre-K curriculum that Big Monkey did at his age, but not quite advanced enough for all of Big Monkey's work (he is doing some of it right along side us). So I think I am going to switch him to the K4 program that Big Monkey completed last year along with whatever work he wants to do with us. It will be interesting to see what level Little Monkey is at when it's his turn to enter into the charter school in 2 years.

Enjoying the last bit of summer

Hawaii and an updose

The month of June has passed all too quickly and I am surprised to see that July is already here. Yikes! I guess taking a week long tropical vacation will suck up the time like that.

The Beach at the Condo

What an amazing vacation that OIT allowed us to have. On more than one occasion I stared at my beautiful family and said a little thank you as I realized that a year ago we would not have been able to comfortably do half of the things we did on our vacation. Here is a quick recap of some of the amazing things that desensitizing Big Monkey allowed us to do stress free.

The first trip to shaved ice (yes, there was more than one visit)

I spoke to Dr. R at our last appointment and made sure that we could stay on the same dose for 3 weeks. That meant we had already been on the dose for a week and a half before our flight to Hawaii and would not updose while away. I might have been comfortable updosing in a bustling city with several nearby hospital choices; however, I was not about to updose on a small island with what, 1 maybe 2 smaller hospitals? No, thank you. Yes, this means I scoped out the hospitals, their locations, their services, and their yelp reviews all BEFORE I booked our vacation. 

We arrived at the airport 2 hours before our morning flight thinking that would be plenty of time to drop off checked luggage, get through security, and reach our gate in time to get our seat assignments before boarding. Well, it was BARELY enough time as we arrived to our gate just 2 minutes before boarding began. No time to get bored, but I was sweating bullets. You would think that the slowest point would have been getting 2 kids, 1 husband, 2 car seats, 3 carry ons, one bag of liquid medications, and 1 anaphylactic kit complete with 6 epi-pens that need to be hand checked rather than x-rayed (which also leads to a pat down for the passenger requesting the item be hand checked - me) through security. However, it was actually checking in luggage that took FOREVER! This seasoned traveling mama (I usually travel alone with the boys) got us all through security in about 5 minutes. And for those of you wondering if you can fly with insane amounts of liquid medication, the answer is yes. I carried on EVERY ounce of medication we needed for the week plus backup medication in case we needed to refill our anaphylactic kit. I also needed to carry an ice pack to keep one of the medicines cold. As long as it is frozen solid and you declare it to TSA, you can take it through.

Doctor's appointments and airplanes are the times I allow the boys unlimited access to Ipads and movies

Food allergic individuals often inform the passengers in the surrounding rows of their food allergy and ask if they can refrain from eating their specific allergen. I felt that this was no longer necessary for us since Big Monkey eats over a peanut a day now. Even so, our buffer zone ended up being fantastic. There was no one behind us and two of the people in the row in front of us were also peanut allergic. Score for one more thing to not stress about! Of course, I did watch the guy one row up diagonal from us (and behind the husband) open a bag of trail mix, dump it in his hand, eat it, brush his hands off, then grab the hand rest to get up to use the restroom. Reminded me why I still Clorox wipe the plane surfaces and was one of those moments I was thankful for OIT.

We're here! Yay, fish tacos!

We landed uneventfully and set off on our adventure. We stayed in an awesome condo community on north Ka'anapali Beach, Honua Kai. I would recommend it to anyone looking for a more home-like place to stay on vacation. The mountain view room was as enjoyable as any ocean view room to be honest. There is something dreamy about finishing almost every day with a gorgeous rainbow.

From our balcony

We ate out, a lot. A lot more than we usually do at home, and it didn't require phone calls ahead of time or pre-planning. We just walked around, looked at menus, and picked places. We still informed our servers of his peanut allergy so they could take the appropriate precautions, but I didn't have to worry about cross contamination and/or carelessness in the kitchen. Although, I must note, most of the places we ate handled my son's peanut allergy with a professionalism that I have never encountered at any restaurant on the mainland outside of Disney. In fact, our server at one restaurant came back to our table to let us know that she spoke to the kitchen manager about the allergy and that he was now aware and would handle our food appropriately. Now, who knows what that really means exactly, but it was far more attention that I am used to. We ate the best pulled pork sandwiches, fish tacos, fish and chips, and even Hula Pie (see photo - think GIANT slice of whipped macadmaia nut ice cream with a cookie crust drizzled with hot fudge.) My son's facial expression in the photo accurately sums up Hula Pie.

Dinner with friends our last night. Hula Pie!

We took a van ride out to the middle of a pineapple field and ate pineapple cut straight from the plant. You'll never find a pineapple in store as yellow as the ones in the photo. If you do, be aware that it is likely already spoiled as their shelf life when picked in that hue is only a day or two.

The pineapple farm

We took a treasure hunt through a lavender farm on the side of Haleakala. The treat at the end of the hunt was a delicious lavender infused shortbread cookie. After eating that cookie, I was very glad I bought a package of culinary lavender.

View from the Lavender Farm

We took a 45 minute one way boat ride on the Pride of Maui to snorkel with fish and turtles. I picked the shorter cruise that stayed close to the mainland (I could have swam to shore if I had needed to) rather than the 5 1/2 hour ride out to Molokini Crater. This was the boys' first boat ride. 50% of the family gets terribly motion sick, so I was terrified to commit to a trip longer than the 3 hours we did. Everything went fine thanks to the help of children's and adult Dramamine, although Daddy Monkey at one point was not enjoying the top deck and moved to more stable deck elsewhere in the boat.

Big Monkey driving the Pride of Maui with Mama in the background and Baby Monkey asleep in my lap

Baby Monkey on the standup paddle board

We rented stand up paddle boards,threw the monkeys on the nose, and cruised our beach. The view of the coral was as gorgeous from these boards as when we were snorkeling. It gave Baby Monkey a great chance to look over the side and really enjoy the colorful fish as he was not as fond of snorkeling. I'm not sure Big Monkey was that crazy about snorkeling or the paddle board rides. At least they both saw a turtle at least once in the water.

The only photo I have of Big Monkey on the board

There was also a lot of beach time, pool swimming (with a water slide!), and shopping. Basically, a very relaxing and fun family vacation that we didn't think we would be able to enjoy for several more years at the soonest.

Beach Time

We did have one little hiccup during the trip. On night 3 the fire alarm went off in our building. It was a false alarm (word was some kid pulled a fire alarm in the halls somewhere). It completely freaked out Big Monkey. He made himself sick, couldn't sleep that night, and basically didn't want to have anything to do with our hotel for the remainder of the trip (thank goodness we didn't spend too much time in the room!). The morning after the fire alarm event, Big Monkey took his peanut dose as usual. This was the same dose, given the exact same way, that we have had for two weeks at this point (the usual time where we would increase the dose a little). Well, apparently extreme stress can affect one's tolerance in the same manner that a cold/flu/fever can. About 10-20 minutes post dose, Big Monkey complained that his chin itched. He had a very fine and light pink rash all around his mouth. It reminded me of the rash I saw during his very first peanut reaction. It lacked the facial swelling that I saw that first time though. Within minutes it was already improving on it's own, but I still administered a 24 hour course of medications per our anaphylaxis plan and let Dr. R know of the development. Dr. R was concerned that maybe Big Monkey was coming down with something. He had me watch for any sign of congestion or a cold. Nothing. Big Monkey was a perfectly healthy but stressed little guy. Needless to say, while this process has given us so much freedom, it also comes with it's surprises.

Can you see the light red lacy rash around his bottom lip?

Four days after our return we increased Big Monkey's dose by 150mg without a hitch. We have now been on a whopping 1150mg (that's 1gram + 150mg) for almost 2 weeks with no issues. Life is good.

Ululani's - Best Shaved ice ever!