Saturday, July 7, 2018

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.

Monday, January 1, 2018

Turning 9 and Having Patience

Well, I hope everyone that use to follow this blog has had some patience for my lack of posting and is still following! Sorry yet again for the lack of updates in over a year. I think it is because everything has been much of the same and we're still waiting for any major changes. Sometimes that is exhausting considering we were not experiencing smooth sailing at the time of my last post in 2016. I can't say that 2017 brought much change for either better or worse. I feel like we are sort of stuck in a holding pattern. I suppose that is better than things going downhill? Think positive, right?

Anyway, I have some new friends that may come across this blog and have no idea what we have been up to or what I am talking about. Heck, it has been so long since my last post that I wouldn't be surprised if past readers have forgotten what we've been up to. So I will provide a quick recap.

Today Big Monkey turns 9 years old. NINE! Having my first baby grow another year older makes me look back to where he has been and what an amazingly strong person he is growing into. Some days I have a hard time imagining continuing our current path and yet he never seems to give up. So we tread forward.
The new 9 year old in the house 

When Big Monkey was 1 he was diagnosed with a severe peanut allergy. He had his first major reaction just before he turned 3 and plenty of small skin issues before and after that. Right after his 4th birthday I found Dr. Randhawa in Long Beach, CA. We met with him when Big Monkey was 4.5 and decided to enter into his Tolerance Induction Program (TIP). In short, in this program, we fed Big Monkey teeny, tiny amounts of peanut to help his body learn to tolerate his allergy. Slowly we worked up to larger and larger amounts with the end goal being a weekly or monthly mega "dose" with free eating of peanuts in between like any other non allergic individual. Four years ago Big Monkey ate his first tiny bit of peanut. It was not as easy as it should have been for him. He suffered through many, many reactions in the first 2 weeks. Finally his body calmed and we updosed over the next 2 years slowly, but mostly uneventfully. Big Monkey graduated 2 years ago last October. It was a fabulous moment. However, 6 months later we had the reality check that his body was not willing to tolerate peanut still. We reduced his dose to 30 peanuts 30 times a week. Things seemed to improve for a short period of time, but then he went back to reacting at least 1-2 times per month.

This past August we discovered that Big Monkey has poor lung function (partially explains why his reactions have started to involve his lungs and breathing as well as why EVERY single cold in 2017 went straight to his chest). So we placed him on a daily inhaler and saw an improvement with his peanut dose for about a month. Then we went right back to the 1-2 time a month reaction. Sometimes they are massive reactions complete with wheezing, snot, swelling, cough and hives, and sometimes they are just itching and hives. I can never predict when a reaction will happen or what type it will be. Just this past week he reacted to 5 mini peanut butter cups from Trader Joe's which should be equivalent to approximately half of his normal 30 peanut dose.

What a reaction can look like - dark circles, red spots, exhausted eyes. This isn't the worst I have seen.

It has been a roller coaster ride to say the least. Some days I really cannot see how we can keep going like this, but in the next breath I cannot see how we would return to a life of complete avoidance of everything. Jackson used to react to touching contaminated surfaces. It made it hard to go anywhere or do anything. It also made grocery shopping so hard as we had to have foods not made in a facility where peanuts are handled. So we will return sometime in February for a follow up and to run more tests and find out what is really going on. We thought it was just the fact that his grass allergy is still sky high and his lung function is crap (it's no wonder the kid could never keep up in soccer and is the slowest any time we go hiking). It could still just be a combination of these two things, or maybe there is something else. It is unclear to me right now. None of this has been easy though. It has been a very long and sometimes very scary 4 years. He wants it to work though, so we just keep going.

Now if we can just get through flu season without him getting influenza to further tear up his poor little lungs and body. Here is to a better 2018! My birthday wish to him.

The new 7 year old in the house 

Little Monkey also just turned 7 and we added an adorable little Monkey Kitty to our family (who is truly as much a monkey as the boys are). So while 2017 has had some difficult moments, it has not been so terrible. Nevertheless, I am still ready to start the new year!

The newest member of the family