Tuesday, July 30, 2013

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...

1 comment:

  1. I am so happy for you! We went to a beach on the east coast this summer and saw peanut shells too! Peanut desensitization is working beautifully for us and I wish the same for you.