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.

Saturday, September 3, 2016

Keeping It Real

It’s interesting that in today’s internet connected society where we have access to more people and more friends in the far reaches of the world that we can be the most disconnected. We choose what tidbits of our life we want to share and the screen makes it easy to hide the rest. Easy to hide any pain, struggles, or suffering. Easy to plaster the smile on our face for the photo or type out a :) to convince people we are great and life is full of sunshine. Somehow in all this, it almost feels taboo to speak of any struggles. People respond with, well, it could be worse, first world problems, at least it’s not cancer, everyone has struggles, etc. This is all true and meant to give perspective, but does that lessen the importance of any single one person's struggle no matter how minor? Does it lessen their need for love, support, and a place to share and find community? Does it make any of those struggles less real? No. How we each deal with a struggle will differ greatly. That is the beauty of our individuality, but sharing is also how we develop compassion, understanding, and perspective for our own lives. So I’m going to share because I KNOW there are others out there walking some of the same paths I have and feeling so utterly alone when that is far from the truth.

Beginnings. There are always a lot of beginnings in life. Periods that start in motion some phase or time frame in our existence. Sometimes these time frames are good, sometimes tough. December 2013 was probably my most recent beginning. It was the start of an approximately 3 year phase that has come with some serious highs and lows.

Let me begin by saying that none of what I write here is meant to be a complaint about my life. I have struggles, but even in my darkest days I love my life. I am still surrounded by so much good and am so lucky for what I do have. I KNOW that and appreciate it with all my heart, but things still get tough. I struggle, and the past three years have been particularly challenging for me as a woman, a wife, a mother, and a friend. A lot has happened, and up until now I too have been guilty of sharing mostly just the good tidbits and not “keeping it real.” So let’s make it real.

Everyone that follows my blog knows all about this one. Oral immunotherapy for my oldest’s food allergy to peanuts. This December will mark 3 years since Big Monkey took his first bite of peanut (May marked 3 years from our consult visit), and it has been an adventure. This adventure has been mostly fantastic. We are gaining huge freedoms, but I won’t say it didn’t come without its price over the past 3 years. It hasn’t been easy. The beginning was rough. The middle was ok, but still took a ton of concentration, daily effort, adjusted schedules, missed social engagements, and even some offended friends. The process was supposed to be no more than a year. Instead reaching graduation took 21 months, and here we are at almost the 3 year mark and are still struggling. That’s right, peanut land is not going perfectly at the moment. It seems that Big Monkey’s environmental allergies are throwing a kink in the system and making him react to his weekly peanut dose, so he backed down to a smaller dose 3 times a week instead. Not a huge setback, and of course he is still SO MUCH safer than before, but this mama is looking forward to no more reactions. His most recent was quite scary and lasted for about two hours. Thankfully, he is doing great on the smaller doses and we have an appointment very soon to figure out what is going on and what to do next. Either way, watching my child eat his poison has been an emotional process. Watching him have even mild reactions is a heart stopping moment that no parent ever wants to experience. It’s like watching your child start to die and wondering if you can stop it in time. Ok, sometimes that is exactly what you are doing. One day in the future his IgE WILL hit zero (I’m determined that it will even if it takes a decade!), and this will all be a distant memory.

Hard to see, but this is his sad little middle of a reaction face. His left eye has hives underneath it in this photo. 
We all experience loss at some point in our lives. Your best friend moves away. Your beloved pet dies. A family member or friend dies. No one is immune to loss, it’s just a matter of how long someone can go in life before that loss occurs. For some, they are well into adulthood. For others, like my boys, they say goodbye to a loved one at a young age. Timing doesn’t matter. It’s hard no matter your age. It’s been a year and a half since I said goodbye to my grandfather but his absence is still apparent every single day. Even my boys mention him at least once a week to this day.

More acronyms! Obsessive Compulsive Disorder. Ok, so this section really should be titled OCD and anxiety because the truth is that for me they really go hand in hand. That’s right, I have OCD. Not the “oh I’m a little strange and like things done a certain way most of the time” OCD, but the bona fide, diagnosed by a psychologist, consumes multiple hours of my day, interferes with life kind of OCD. Yeah. It sucks.

Here is a description of OCD from the Mayo Clinic:

“With OCD, you may or may not realize that your obsessions aren't reasonable, and you may try to ignore them or stop them. But that only increases your distress and anxiety. Ultimately, you feel driven to perform compulsive acts in an effort to ease your stressful feelings.
Despite efforts to ignore or get rid of bothersome thoughts, the thoughts or urges keep coming back. This leads to more ritualistic behavior — and a vicious cycle that's characteristic of OCD.”
Yup, vicious cycle just about sums it up, and good luck breaking that cycle. It’s possible, but it’s intense and so not fun. I was actually diagnosed with general anxiety disorder (GAD) and OCD tendencies back in college, but the full OCD didn’t really start kicking in until my last semester in college. It wasn’t severe until my first year of graduate school. That is when the extreme ritualistic behavior set in. No one seemed to notice though and I managed to go on with life. That extreme period lasted for maybe two years and then it seemed to subside for several years. I’m not sure what the trigger for that period was nor am I sure what caused it to fade, but it did. Then it came back with a vengeance sometime in 2014 or 2015. I’m not sure exactly when it started on when it got bad, but by early 2015 the extreme ritualistic behaviors were back. By summer 2015 I could hardly leave my house for anything that wasn’t necessary. Needless to say, that was hard on the ENTIRE family. It takes awhile to come to terms with the idea that you are not quite right and accept that you may need professional help, but at that point I knew that I did. So I sought help and went through my second round of cognitive behavioral therapy (I went through my first round of CBT in my junior year of college to help with anxiety). CBT is the most uncomfortable and anxiety producing process one can face, but when done correctly it is effective. I spent 6 months working with an amazing professional who pushed me so far out of my comfort zone that I hated her at times.
I officially “graduated” from therapy back in early May, but I’m far from perfect still. She helped me break some of the compulsive cycles and thoughts in the early months when it was too intense to do on my own. She was my sounding board when I thought I was losing my mind. Then she armed me with the skills, tools, and awareness to be able to continue my practice of breaking compulsive cycles and changing the way my mind thinks. I have spent the last year literally retraining how my brain and body respond to stimuli. This takes a lot of emotional effort on a daily basis and is sometimes utterly exhausting. A lot of my friendships have been ignored or put aside because I just have not had enough energy to tend to both. However, my husband exclaimed about mid summer that we have “done more things in 2016 than we have in the past several years combined!” So I’d say that speaks positively to my efforts and recovery.
I will likely always have some idiosyncrasies and probably come across as quite strange at times, but I really don’t care. I’ve gotten past worrying about what people think. It’s the only way I can go out and enjoy myself. There are still things I don’t do right now. I won’t touch a doorknob and shoes inside my house are an absolute hard line no. They are “triggers” for me (and these are not my only triggers, but are the ones I am willing to admit to you). I will continue to work on them and one day they may be gone, but it happens in baby steps. People look at me strangely sometimes, but I really don’t care what they think. So I’m weird. I’ll still smile at you and say, “Hello! It’s a gorgeous day today. Have a wonderful afternoon!” I won’t murder you in your sleep, so what does the other stuff really matter? I think for the most part I’m still fairly fun to hang out with, and hey, at least you know I won’t be judging you for anything.
I look fairly "normal," whatever that means. 
So in the middle of all that OCD pleasantness, I also started to feel extremely run down. Looking back, that probably started around the same time as the OCD started to spike. Naturally, we all thought it had to do with the stress, anxiety, and OCD. It’s an exhausting disorder. Then I kept gaining weight and no matter how much I ran or ate well, it was not coming off. Thanksgiving weekend was a red flag. We got up to go to a potluck at 11am. I got up and made a loaf of bread beforehand. On the car ride there I looked at my husband and said, “I so do not want to go to this. I just really want to go home and go to bed because I am so damn exhausted.” He thought it was my OCD and wanted me to fight through it. I did but I told him something wasn’t right because I just wanted to crawl into bed. I couldn’t get out of bed even if I slept until 8am. Not normal for me at all. Bloodwork showed my thyroid was low, so in December I started medication. Within the first month I started feeling better, but it took a good 6 months for me to really feel more like my normal self again. At this point I feel mostly normal, but other hormones and medications can affect the absorption of the thyroid meds, so I’m currently feeling a little tired and waiting for another adjustment this month. I’ve also discovered that my OCD seems to be closely tied to my hormonal balance (not suprising), so that’s been challenging too. It’s a dance I will likely play off and on for the rest of my life, but glad that I have an answer with a solution.
As if all of the above is not enough for the past three years, right? Nope. In the Monkey household we like to do everything at once. Apparently we like crazy. Lol. Yes, you read that right. Infertility. I am young and healthy with absolutely nothing wrong according to medical tests. Same goes for my husband (well, except maybe the young part - he does have a number of years on me). I have had two spontaneous pregnancies in the past, and yet we apparently cannot have a third. This journey also started in December 2013.
Since we got married we talked about having three kids. That was our hope and plan. All was on track until Baby Monkey was born. There were complications with his birth that led to a doctor giving us the advice for not having any more children. So we faced the fact that we were done. It was a sad time. I tried to let go of the dream of having one more baby and did ok, but really I was sad. In December 2013 we decided that we were going to find a way to have a third even if it meant surrogacy (which is quite a complicated and expensive process come to find out). In the process of looking for a fertility specialist that would help us with surrogacy, we were advised that my medical record showed no suggestion that I could not have a successful pregnancy so long as I had 1) close observation and 2) an early c-section delivery. So I sought a second opinion from the doc that would be my delivery physician. He concurred with the specialist and said that if I were his wife or sister, he would say go for it. So we decided that we would. There were steps involved in that since we had taken some permanent steps to prevent a future pregnancy (in reality, almost everything is not truly permanent), so it took awhile. But summer 2014 we were hoping to be expecting soon.
Months went by with no news, but that was ok because we weren’t in a hurry. Then a year went by. We sought the advice of a few doctors, but everything looked normal and they said we just might need a little more time. So we gave it more time. By a year and a few months, we decided to pursue more tests and speak with a fertility specialist. Everything looked great on paper, but they offered us fertility treatment. So we gave it a shot. We tried for three cycles with the fertility clinic. From what I read, 90% of the successes for the method we chose would occur in the first 3 tries. After the third, the chances of success diminished each cycle. The hormones, while mild compared to some fertility treatments, were enough to drive me out of my mind. I felt like a crazy person with mood swings for half the month. So we decided that three cycles would be our limit. At that point it would have been 2 years since we started trying.
Needless to say, I do not have good news on that front. We called it quits on trying to expand our family at the end of July. It was a bittersweet day. I am sad that I will never feel another flutter in my belly, never nurse another baby, never have the family that I envisioned, but I’m also glad to be done with the emotional rollercoaster that comes with the monthly expectation that maybe there will be good news only to find disappointment. I’m not delusional though, I know that while there will be so many things I will not have, I also know that I will not have to endure having my body be on demand to someone else, smelling like spoiled milk, sleep deprivation, wiping the poo off someone else’s behind for 4 years, or the many other struggles that come with having a baby. I know I have two beautiful children, and trust me, I am spending my time with them to the fullest.
However, it is not easy to say goodbye. It is not easy to close a chapter on your life that you thought you would have. No amount of what I do have will fill the small void of the person we wanted to add to our family. They will always be missing even if we never met them. That is ok, but it’s also ok for me to be sad and mourn their absence.
My first baby 
Even with all of the above there has been so much good. There is more time in 3 years than the few negatives above could possibly fill. I have watched my babies blossom into amazingly talented little boys. I have found the courage to face my demons and realized that I am a much stronger person than I ever thought before. I learned what amazing friends I have to stick by me even in my silence. I have been taught patience which was not a virtue I had in the past. I have found peace in who I am, flaws and all. I love where I live and the community I am a part of. Best of all in the past 3 years is that we now have a plan for my parents to move closer. I have always been saddened by the fact that I ended up living so far away, but they presented a 5 year plan to move up to the Bay Area just last year. Then my amazing husband countered their plan with a new one that gets them up this way even sooner. So my excitement on what the future holds is great. I have an amazing husband, children, and family.
My crazy, adorable little family 
Today I share after years of silence because life is good, but I have learned that even when life is not good, it’s okay to say so. We all need to lean on each other. I constantly hear the saying that it takes a village to raise a child, but you know what, it takes a village just to live. That includes being there for each other. So if you are struggling with anything no matter how big or small, reach out if you need to. I’ll be here. I’ve always been here.