Friday, March 14, 2014

A Whole New World

Wednesday March 12 was the most amazing day for Big Monkey in terms of his peanut allergy. We went in for our first in office updose. I had no idea how Dr. R was going to approach the updose, but I knew the goal was a big updose. 

We arrived and the hospital required Big Monkey to wear a miniature surgical mask. It is cold and flu season and they are trying to protect their patients. He looked so cute, but he said it was sort of hard to breathe in it. We removed it once we got into the allergy clinic. 

The clinic was a ghost town as apparently we were squeezed in during the lunch hour. I sort of enjoyed the peace and dim lights. Considering how nervous I was, it helped calm me down a bit. They got us all set up and called in Dr. R. We sat down with 4 doses in front of the doctor. The final dose would make for a final tally of 4 times the amount of peanut flour compared to the previous dose. What makes this even more special is that he would be consuming this dose more or less all at once. Each would be taken about 20 minutes after the previous, but this doesn't leave time for anything to leave the system. It all just accumulates. Yikes!

For the past few months we have been dosing with "split" doses. I asked how this works. Basically, the time between the doses creates almost a time release like effect (like what would happen if you took a drug in a time release capsule). So it helps Big Monkey's body not be overwhelmed by the peanut. 

I won't say I wasn't scared. Big Monkey didn't seem concerned at all. At least I somehow manage not to project my fears and anxieties on him. 

Well, my fears we completely unfounded. Big Monkey sat there without even the slightest itchy spot. No redness, no hives, nothing! About 20 minutes after the final dose he said his tummy hurt a little, but it was nothing like before. The last time he spiraled downhill rapidly and looked like he was going to toss his cookies. This time he was asking for a snack and ready to run around within minutes. Of course he wasn't allowed to run around for the next two hours as we had to observe our normal calm period. We did get to wander around the hospital grounds for the next few hours. So we took a stroll outside. 

They wanted us to stay for at least another hour after that, but I was welcome to stay until 5pm if I was worried about a delayed reaction. Dr. R assured me that he was pretty certain that any reactions after the first hour would likely be no more serious than hives, especially if we walked around a little early on. Of course, nothing is a guarantee, but I felt that he was likely right based on what I have seen so far with my son. So we waited another hour and then went back to the clinic for one more vitals check. By the time we left the hospital, it had been several hours since the last dose and there was not a sign of anything. Big Monkey wasn't even sleepy like the last time. Woot!

So we are now eating approximately the equivalent of 2.5 peanuts! Can you believe it? 2.5 peanuts and not a single symptom! I haven't even noticed any increased eczema. We are back on our split dose for now, but this is still amazing! The best part of our visit was not even the updose though. I know, how can it get better than that? 

Well, Dr. R gave us the go ahead to consume made in the same facility, made on shared equipment, and may contain foods (not foods that actually contain peanuts but basically those that may be cross contaminated)! Anyone who has ever experienced shopping for a person with a food allergy knows just how huge of a deal this is. I can now buy from the bulk bins. I can now buy any brand of tortilla chips (pending they are not fried in peanut oil). I no longer need to special order other nuts from a peanut free facility (which is expensive by the way). I will likely no longer have to visit 3 grocery stores just to find the safe versions of all the items on my list. Huge deal.

A long term plan was also discussed. Based on Big Monkey's size, Dr. R wants to spend however long it takes this year to get to 4 grams. That is approximately 20 peanuts and in his opinion and protocol will ensure that Big Monkey is a little more than bite proof but not to the point of incorporating peanuts into his diet. Full incorporation is the end goal of Dr. R's protocol, so that will be the end goal. After we reach 4 grams, we will spend the next year or two working our way toward 9 grams. That will be considered graduation and Big Monkey will be able to incorporate peanuts into his diet. We will work toward this slowly with updoses only occurring once every 3 months or so. So we are in this for the long haul, but everything after this year will be much more manageable. Can you imagine the potential this all holds?

So what did we do to celebrate? We went and had our first non safe brand chocolate square and ice cream! And it was AMAZING! I think it was the best tasting ice cream and chocolate I have ever eaten. Probably because it wasn't served with a side of panic. 

Wednesday, February 26, 2014

Progress, and please don't try this at home

It has been two weeks since our last updose, and all has been well and busy. We took the boys to the drive-in movies for Valentine's day to see "The Lego Movie." Now I have two little boys running around saying "I'm here to see your butt" and a husband who keeps singing "Everything is awesome!" It's all a crack up really.

I bought the boys these cheap little growing sponge things from the craft store last week and they thought they were the most amazing things ever. It was a great lesson on talking about things dissolving and absorption. The sponges now live in the bath tub.

The boys picked out new pets. We've been talking about it for awhile, so we finally took the plunge. The tank sat empty for a few days before we brought these two buddies home. Sadly, the little blue one didn't even last 24 hours, but we have a new bright orange one to keep the little yellow one company. We'll work out way up to about 8 guppies over the next few months. 

I took the boys out for lunch one day after Big Monkey had to have a biopsy of a strange growth on his elbow. He was not anticipating a needles and stitches from the dermatologist that day, so he received several bribery treats in return for sitting still. We'll have results on Monday and hoping that they are nothing. For now he is rocking his first two stitches just below his elbow.

We made more peanut doses. I'm getting faster. It no longer takes multiple hours. Just half and hour or so for this many.

And finally, we rounded off the last two weeks with another updose today. I was a little nervous about today's updose. We doubled our lunch dose and now our total dose for the day is the twice what we had a hard time with in December. It was a big step. Big Monkey seemed a little extra tired today and his allergic shiners (dark circles under his eyes) were a bit more prominent, but otherwise he did really well. No hives, no strange feelings, nothing. So that's good!

With that said, please, please do not try anything like this at home. If you or your child have been diagnosed with a food allergy, strictly avoid your allergens unless otherwise directed and under the supervision of a board certified allergist. I have spoken with a few people over the last month who, upon hearing about our journey, have said something along the lines of "oh yes, I decided awhile ago to expose my kids to small amounts of the things they are allergic to. It just makes sense." Thankfully, the people who mentioned this were not talking about anaphylactic allergies, but even then exposure to allergens should be avoided. OIT without proper medical supervision is very dangerous. Even with proper medical supervision OIT can feel very scary. I have a love hate relationship with our updose days. I am excited but also scared out of my mind as to what could happen if his body refuses to tolerate the new amount of peanut protein.

So I leave you with a picture of Big Monkey with his drawing of a monkey. More to come in a few weeks! We'll be back in Dr. R's office and moving forward in some form.