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 

Friday, September 9, 2016

OIT Answers

Today was our visit to see Dr. Randhawa. And am I glad we got to have that visit today! I learned a lot about what is going on, and am now full of so much joy and hope.

This journey has not been short or easy, but today I can say it has all been worth it. Dr. R said today that Big Monkey is a unique case that he doesn't see very often, but that makes his blood work and progress all the more important to research and study. He's a little puzzle, which probably also explains why it has take almost 3 years to complete OIT for one allergen. I know others that have almost completed 12 allergens in this same time frame. I guess you could say we really finished last October, but I count this recent set back as marking that our journey is not over yet.

So as you may know, Big Monkey has been struggling with his dose since this past spring. Spring wasn't so bad. We had a few dosing days here and there where he developed a few hives on his head, neck, and/or back. Nothing we can't handle or put up with. We were dosing 60 peanuts once a week, so this meant that we were only having a reaction maybe once a month. Tolerable although not ideal.

Then we hit summer and for awhile the reactions seemed to get more frequent. About the same severity, although once or twice we also dealt with a wet sounding cough. By mid July Dr. R had received partial results of our blood work and decided that Big Monkey's environmental allergies were high again. So we went back on a nasal steroid and an antihistamine. He said within a few weeks we should see improvements.

I saw improvements in the first few weeks of adding the medications. We were able to dose without issue. Then the reactions came back. At first they were still relativley mild, but they started happening pretty much every single week.

By August 14th he had reacted to more doses than not and then had his largest reaction. In retrospect, I probably should have used the epi pen, but at the time things seemed in control with our action plan medications. It started off with that darn wet cough. This symtpom is the one that scares me the most because it is airway involvement. We have treated this before with oral meds and steroids, so I went that route. If I had not seen almost immediate imrpovement, I would have epi'd. After 40 minutes the wet cough was gone and Big Monkey said he was feeling better. A little while later he started blowing his nose. Snot like he had a cold. I've seen this before too. He did that for awhile and then suddenly he had little hives. Overall his poor little face just looked so sad although there was no facial swelling. This was the point where I started thinking I should have used the epi pen about an hour earlier, but I was still seeing improvements as is usual on the meds. Then as suddenly as it had all started it was gone. He was back to normal and even the other people I was around at the time noticed the sudden turn around. The danger had passed, although next time I see this I will epi. Dr. R says that with our new plan, that should be the last time I ever have to experience that. Praise God for that!

Anyway, at that point Dr. R pulled the plug on 60 peanuts and backed Big Monkey down to 30 three times a week. I was relieved because I really didn't think I could give 60 again even if he asked me to. My mama nerves were shot and just couldn't handle another week of that. 30 was tolerable and has been handled smoothly. Zero issues for the last 3 weeks now.

Today I found out the why behind the above chaos. Big Monkey's little immune system is still going haywire. His protective antibodies (IgG4) have gone from 10 (very low) to over 300, which is the same level that his allergen antibodies are hovering at. So his body has the tools to shut down the allergies, but instead it doesn't know where to focus.

This lack of focus is in part due to his still very high grass IgE, although it is lower than when we started. We are currently administering SLIT for grass allergies (sort of like allergy shots except it's an oral spray), but apparently its not enough. Dr. R. believes the grass allergy is the culprit, and the reason why is some of the best news.

Big Monkey's peanut specific IgE is almost zero. That is the piece of information I cannot believe is true! It came back as less than 2. The last time I saw numbers that low was when he was 2 years old. We started the OIT process with a peanut IgE of over 100. Last year he was at 41. Today, less than 2. In case you don't remember our goal number, it's zero. We are so CLOSE!

Here's the complicated part, the antibodies to the peanut proteins that cross react with grass (so they look similar) have gone up. He also still has antibodies to the dreaded Arah2, which suggests anaphylaxis, so we're not out of the woods yet. Antibodies to other foods have also increased. He has had a significant increase in antibodies against almonds and hazelnuts and a slight increase to egg as well. We eat those often though, so we plan to keep eating them. It suggests his body is not sure what it is doing yet though.

Confused yet? OK, simple terms. He's highly allergic to timothy and bermuda grasses. He's still allergic to peanuts, but his numbers have decreased A LOT. He's now throwing positive results for almonds, hazelnuts, and egg, but we still eat those and do not plan to stop. Solution: we need to shut down the other allergic reactions.

How do we do this? By aggressively going after that grass allergy. We are already treating with high dose SLIT, but it is not enough. So next week Big Monkey starts on an FDA approved SLIT tablet for grass. It is specific for timothy grass, so it is perfect for us. Sadly, he has heard word that it may be discontinued, so we will try to stock up if we can. He will likely need to be on this tablet for a good 18 months to kick the grass allergy. Next summer we will run blood work again to see if this theory is right (never know how his body may surprise us).

As for peanut, we will stay on our 30 peanuts three times a week for the next 6 months. Then we will consider trying to reintroduce the larger and less frequent quantities again. Dr. R suspects that after 6 months on this new SLIT tablet, Big Monkey will not have any issues what so ever with the larger doses of peanuts. Until then we will work on expanding his taste for things flavored peanut in hopes that he will like them more by then.

So the journey is not quite over, but I can see the light at the end of the tunnel. I thought I saw it last fall, but apparently it was just a small window instead of the door to the other side. We still have all this amazing freedom though. He is safe. We do not have to worry about daily exposures or normal items. He is not likely to react to those things. This is what most people in other OIT programs strive for as the end goal. So for that I am thankful. Let me give you an example.

Today I did the allergy parent massive blunder. I walked out of the house without our epi-pens and medicine kit. I do not know where my head was this morning. In 7 years this is possibly the only time (there may have been 1 other time) I have ever forgotten to have Big Monkey's epi pens with him. My knee jerk reaction was to panic, but I was already on the other side of the massive construction traffic and a trip back would have meant missing our appointment all together. So I made the call to go ahead knowing we were going to the best place to be without. Then while speaking with Dr. R I realized that we would be fine. Even though we were going to eat at In n Out down the street after, we would be fine until we got home. He would not be eating any peanuts today, and he is well beyond cross reactivity with other foods being an issue. So we ate our lunch and then went home. I won't soon forget them again because it is a real and major risk to be out without them, but even though we are not done yet, we have already reached the other side. Not the end, but the brighter, easier, safer side of this allergy life. The one where I don't have to worry so much. The one where we can say we have a "mild" allergy. That my friends is priceless. The rest is a bonus. The cherry on top of an already delicious peanut butter sundae.

Today was a good day, and the future will only be better. I told you in my last post that we would hit zero even if it took a decade. Looks like it just might not take that long.