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.