The Beginning of OIT

Hello 2014 and a new resolution to actually keep this blog more updated1! I can't promise weekly updates, although I will sure try. I know there are people who use my blog as a primary way to follow Big Monkey's journey and I'm slacked and left them hanging. Sorry all! I will again try to make this a priority.

Christmas Pajamas

The last three weeks has felt more like four with everything we've had going, but now that we're at January 5th, I think I can see that 2014 is going to bring some amazingly wonderful things to our life. The last 3 weeks have included a trip to the allergist to start OIT, an unexpected extended stay near the allergist due to a complicated start, Baby Monkey turning 3, Christmas, a new year, and Big Monkey turning 5!

Baby Monkey's 3rd Birthday

December 13, 2013 was the first day of a major journey for Big Monkey. That day he officially began peanut desensitization therapy (I'll call OIT) with the amazing allergist we found last spring. We've been treating other allergies and working toward this day since May, but even so, I still cannot believe that we started. I had of course hoped for a smooth and uneventful beginning, but OIT has proven to be a whirlwind of a process already.

OIT Day 1: In Good Spirits (what little boy with unlimited access to an iPad for the day wouldn't be in good spirits??)

At the office with Dr. R, Big Monkey did fantastic. He showed no fear, listened well, answered our repeated questions about how he was feeling, and showed Dr. R his real personality. Thankfully, Dr. R liked the fact that Big Monkey had to put his own little twist on everything (i.e. there was no way we could get him to say "E" without some theatric or another). We made it to the 5th of 6 peanut doses that day before Big Monkey said his tummy hurt (just moments before the 6th dose was to be given). He quickly progressed downhill to looking very green, so we opted to stop. Dr. R gave Big Monkey a dose of benadryl to help, had us walk the halls, and then eventually sent us on our way with instructions to feed Big Monkey a daily dose of peanut flour well below the 5th dose that caused the stomach ache. All was well until the benadryl wore off. That's when the hives appeared everywhere. Big Monkey even had them on the back of his ears. We were given instructions to follow a 24 hour course of medications to combat the reaction. We figured this was all a reaction to the 5th dose in the office, which we already knew was too high.

I weigh out every dose and place it a cookie or muffin for Big Monkey to eat every day

Unfortunately, Big Monkey reacted similarly to the lower dose that we gave at home. Hives and a 24 hour period of medications again as well as instructions to lower the dose even more. We went through about a week trying to find the right dose for Big Monkey. You're right if you think it's a little strange that it took so long. We should have went home on the right dose, right? That is supposed to be the plan. What we didn't know is that Big Monkey displays some very delayed reactions. The reactions to the doses we gave at home came anywhere from 3 to 5.5 hours post dose! Typically a patient will react within 20 minutes and maybe as long as an hour or so later. So it took a little longer to figure out how much Big Monkey could tolerate. Thankfully, we are armed with a very extensive, aggressive, and reliable anaphylaxis plan.

Part of our anaphylaxis plan includes activated charcoal. It tastes like thick black, chalk, but Big Monkey thinks it's funny that it makes his mouth look like something out of a horror movie

Christmas Day brought our first hive free day (we had several days on our current dose where Big Monkey was experiencing 5 or less tiny hives that were not enough to make us back down the dose any more). We have been hive free since, although not without incident. We've seen everything from strange red rashes on his forearm, bright red ears, vomiting, and complaints of "needles in his ears." Most of these are due to external factors such as getting over heated, not eating enough before his dose, and his dose aggravating his other allergies. Regardless, every symptoms brings a new wave of stress and panic.

Adorable brotherly love (too bad they aren't always like this)

As a mom, I have never felt so excited and so scared at the same time. My eldest baby who has been severely peanut allergic since before he was 1 year old, is now eating the equivalent of 1/8th of a peanut every day. Yes, this is a tiny amount compared to someone who is not allergic, but it is a start! It brings us hope. This week Dr. R will discuss when and how much we will updose. At this point, I'm just hoping the days following the new dose are less eventful than our first week in this process.

Big Monkey and his mommy made custom cake

Second OIT Visit and Promising News!

Just this week a young girl died after taking a single bite of a rice krispie treat that happened to have peanut butter flavored frosting on top. She spit the bite out and her parents administered benadryl and 3 epi-pens to no avail (you can read the story here if you would like more details). In the wake of this news, I am even more thankful for the news we received from Big Monkey's allergist this past week.

I know I never updated with test results from my last visit. The doctor didn't receive the results until about a week before we arrived for this follow up, so there was nothing to report. Of course, I spent the 2 months speculating. What if Dr. R recommended inhaled steroids or other medications with side effects? I know I agreed to medicating as needed, but would these be needed and when it came down to the moment, could I actually say yes? This is my baby we're talking about here. Daddy Monkey and I had sort of come to the conclusion that we would not like to medicate Big Monkey with anything that would have detrimental side effects (i.e. stunted growth). Until we got on our vacation that is!

Big Monkey's appointment was scheduled the day before our anniversary, so we decided to take a road trip and make getting there our vacation for the year. We stopped to see a lot of things along the way. We visited 2 beaches, a zoo, a theme park, a historical building, and a few other fun stuff along the way. All I can say is, it was a reminder that peanuts are everywhere! By the time we were halfway through our trip, we were rethinking our decision to not go forward with OIT if we had to medicate with things that may have side effects.

Our first encounter was at beach stop #1 on day 2 of our trip (yup, that's right, only 24 or so odd hours into our vacation). We trudged out to the beach with our stuff, scoped out a nice spot, set up our stuff, dumped out the sand toys, and played for 5 minutes. I got up to get the Frisbee for Baby Monkey about a yard or so from where we were sitting and what did I see? A peanut shell. Ugh. I scan for shells, peanuts, wrappers, and napkins whenever we go to set up anywhere, but light tan sand makes great cover for peanut shells. I decided I would get a wipe and pick up the 1 peanut shell and take it to the trash. Well, that task became too great when I found many more shells. So we moved farther away. I still walked the shells I had in my hand back to the trashcan, and, of course, on the way there was a trail of shells. I wish I had more supplies and could have picked them all up, but I was freaking out about the few already in the wipe in my hand and not having a sink to wash my hands before going back and touching Big Monkey. Crisis averted though and no reactions. Whew...

The sand looks clean enough, right?

Exposure #2 came only a few hours later. We had decided we would get fish and chips from a local restaurant. We have eaten at this restaurant twice before (Big Monkey too), and everything was safe at that time (we asked). It had been months since we had been to this restaurant, so we inquired again about peanuts (after we ordered as I was wrangling tired, hungry kids and almost forgot to ask - I know, how does one forget? Trust me, it's possible and that's one way accidental exposures happen). The cook said no peanut oil, but some products that now go in the fryer have peanut extract in them and he said we should avoid anything in the fryer. What?? Grill was safe (do I really trust that? No, but it was late, we needed to eat and had no other good option at the moment). Poor Big Monkey had the most disappointed look and kept telling me all night that he would have rather had the fish and chips than the burger he got. He never threw a fit though and knew why. He made me promise that I'd make him the exact beer batter fish and curly fries (anyone know how to make perfect curly fries??) when we got home. I also spent the next 4 hours checking his face for hives and monitoring his breathing just in case. Ugh... Again, no reactions, crisis averted to the detriment of mommy's stress levels.

The zoo trip was a success

The next 2 days went really well and the zoo we visited even had very well labeled animal crackers (not made in a facility with any nuts at all! Woot! I did a happy dance in line and made the kitchen staff laugh.). Exposure #3 came on day 5 of our journey. Where? The beach again - a different beach hundreds of miles away from the first one! Ugh, really? What is the beach? Peanut snacking zone? This one was tangled in some seaweed:

The Dreaded Enemy in Our Lives

We also saw some cool jelly fish on the beach though. Much better than peanuts.

Purple Jelly Anyone?

 And the boys (especially Baby Monkey) spent a lot of time flying a kite.

Thankfully, there were no more peanut encounters after day 5. We enjoyed the next 5 days peanut free (or at least peanut free to our knowledge). 

On to the news from the doctor! Of course the new panel run by Dr. R showed that Big Monkey is still allergic to peanuts (didn't expect otherwise). However, this test showed his levels against a protein that shows a high likelihood of severe reaction are much lower than other tests have shown. While they were "much lower," the number is still considered high indicating that Big Monkey is still at risk for severe reactions. Thankfully, he has at least detectable levels of protective antibodies against peanut, which are the antibodies we hope to see increase over time with desensitization. He also has a very high level of antibodies to certain grasses (environmental allergy). This high grass allergy may in fact be keeping his immune system in a hyperactive or extra sensitive state. Dr. R believes that if we can "calm" his immune system by addressing this grass allergy first, that we will have much more success with peanut desensitization. Other doctors do not practice this, but Dr. R's scientific reasoning is sound and due to my science background, I feel very positive about this approach. 

So what does this mean for treatment? Why am I so excited? Well, in just a few weeks we will receive a solution that Big Monkey will take by mouth every day for the next year to year and a half to rid him of his grass allergy (sort of like an oral equivalent to allergy shots). We will also start a regimen of nasal steroids and a daily anti-histamine to help calm his immune system. Dr. R believes that after about 3-4 months on this oral solution (called SLIT if anyone was wondering and wants to look that up), Big Monkey's immune system should be calm enough to start peanut desensitization! We will need an additional round of blood work to confirm, but, if the blood work looks good, then our next set appointment in December will be the start of our journey into peanut desensitization! There may be bumps in the road, and there is always the chance that this won't work for us, but I can't help but daydream about the possibilities this will bring! To be honest, I have spent the week daydreaming about grocery shopping without having to read a single label, not having to hover and panic if I think Big Monkey has come in contact with a peanut, and taking a family trip to Hawaii (the idea of going into anaphylaxis in the middle of the ocean with no where to land is enough to keep us on the mainland). There are of course much, much bigger benefits from this process, but in the here and now, these are some of the items that take up so much of my energy (and a trip to Hawaii for a vacation to de-stress would of course be lovely).

The path has been laid and the journey begins...