Peanuts, School, and the 2E Life

Woohoo, I'm averaging about a post a year again. I'll keep on trying to change that, especially since getting my thoughts and experiences down on "paper" seems to be very useful. Maybe the kids will even want to look back on their childhood this way one day. Who knows. Or maybe they'll hate that the information is on a blog, but hey, then I'll delete it I guess. They know about it now and are fine with it, I've checked. Anyway, I digress.

One of our many summer adventures: A trip to Galaxies Edge at Disneyland. 

I think a change in mentality will help with more postings. I have to ask myself why I haven't been posting. It started because life was boring. Peanut OIT was boring (not much was changing beyond be fine, react for no reason, be fine pattern) and school was boring (one can only post so much about math worksheets and sentence structure). Then it sort of morphed into a well, no one is really going to want to hear about the things my kids are handling now. Why? Well, because it seems that talking about academic success and struggles is sometimes a sore point with other parents. That is the beautiful thing about blogging though. If you don't agree with what I am saying or it in any way offends you, then you can just stop reading and go back to whatever friendship style we had outside this blog because I won't bring these things up elsewhere unless asked.
So what are the kid monkeys up to these days? Lots. The included photos are just a small sampling of our summer adventures. We'll start with Big Monkey as we so often have. He's still doing peanut OIT. Yup. This December will mark 6 years since he ate his first peanut dose. Things are still not perfect, but life in the peanut realm is decent. Since January Big Monkey has only had 5 anaphylactic reactions. I know ONLY 5 makes many people cringe and think, "OMG, that's a lot!" However, that is down from every 2 weeks to once a month all year long. This year 4 of the 5 reactions were all clustered into one 4 week period (May/June) which corresponds to the season for his peak allergen, timothy grass. One of those 4 may have been due to fighting off a virus and traveling. The 5th reaction also revolved around traveling and not taking care to put more time between dose and hustling to the subway to get where we needed to be. Whoops. Otherwise, he is good and we just keep on moving forward.

We still made it to the Statue of Liberty even though he had a
dose related reaction that morning. We were just late. 

Little Monkey has been as busy as ever. Thankfully still no food allergies and SLIT seems to have gotten his environmental allergies under control. He still struggles with nosebleeds, but so did his great Papa, so that just might be genetic. He's loving school, kung fu, and all his music. He has taken on violin in addition to piano (maybe I posted about that last year?) and loves it.

Little Monkey feeding his favorite animal 

Big Monkey is also taking piano and kung fu. He's sort of neutral on both, but doing well and doesn't want to stop (so it must be enjoyable to some degree). He's also trying to pick up some guitar skills and will start a new online tutor class soon.

Big Monkey feeding and petting a rhino! 

Both boys have started a coding class and are showing great promise just like Daddy Monkey. We are still homeschooling and both are thriving with online classes (both live and self paced) and book work. It seems that the schedule just keeps getting busier and busier, especially since we also spend a lot of time in the winter snowboarding.

It was so neat to be this close to these huge animals!

So the newest discovery in our parenting journey is that both boys are likely twice exceptional or 2E. What is twice exceptional? Well, the formal description is:

"The term "twice-exceptional," also referred to as "2e," is used to describe gifted children who, have the characteristics of gifted students with the potential for high achievement and give evidence of one or more disabilities as defined by federal or state eligibility criteria." (nacg.org) 

It's no surprise with two intelligent parents and prodigies on both sides of their bloodlines that our monkeys would be gifted. How much so and the disabilities that have come with it was a little bit more unexpected, and proves to be challenging in both raising and educating these two.

On a cave adventure in Grand Cayman

We already know that Little Monkey is profoundly gifted, and his initial evaluation also suggests that there is something else he is struggling with. His reading comprehension scores and another reading measure were well below where his other scores suggest he should be. So he is going through his second round of evaluations this fall and winter. Hopefully before next school year we will know what we are dealing with so we can tailor his curriculum to his specific needs. His evaluation process includes testing with his educational psychologist, a sleep study, and a visit to the developmental ophthalmologist. More assessments may be pursued as the educational psychologist uncovers what exactly he is struggling with.

Little Monkey and Daddy Monkey on stand up
paddle boards in Grand Cayman.

Big Monkey completed his second round of assessments in late spring. So we have a good picture of what is going on with his brain as a whole. He is also profoundly gifted (in fact, the boys' IQ scores only differed by 3 points). This sort of blew me away as he has always struggled greatly with a lot of school work. His language skills clearly indicated he was a smart kid, but I had no idea that he was this level of smart. Apparently, he is just really good at compensating for his disabilities.

Big Monkey is dealing with a number of struggles. The first and probably common issue that many kids struggle with is a sensory processing disorder. We have over the years found ways to work around this (i.e. tried about a million different brands of socks and underwear to find ones that did not make him feel like he was wearing a cactus). Thankfully, this no longer inhibits the progression of our day or his ability to sleep or wear pants.

Big Monkey learned to solo kayak

His more pressing issues include: developmental motor coordination disorder (often called dyspraxia), possible visual processing disorder, possible auditory processing disorder, dysgraphia, and dyslexia. They also gave him a diagnosis of "provisional ADHD, mild," but the truth is that the other listed disabilities often mimic the symptoms of ADHD. So we will address those first and then there is a really good chance any ADHD symptoms will disappear. What are each of these "disorders" and how do they affect his education and daily life?

Big Monkey snorkeling off shore.

Dyspraxia - I will admit that this diagnosis probably offered me the biggest sigh of relief as a parent. For the longest time I thought somehow I had created a lazy child. A kid unwilling to do things like learn to tie his shoes. Dyspraxia is a delayed development of motor skills and/or difficulty coordinating movements. This makes it difficult to master simple every day tasks including age-appropriate self care items (like tying shoes or buttoning buttons). We practice these items almost every single day and have for years, but they are still a struggle. Physical therapy or occupational therapy is usually used to help, but many have found that marital arts practice, if done correctly, has far more success. So we are already walking down the right path for him. The best way to really understand what Big Monkey experiences is to think of it like this: Big Monkey knows the idea behind tasks like tying his shoes. However, his brain cannot tell his muscles what to do. The two are disconnected. If you can physically manipulate his muscles movements while verbally describing to him what he is doing and how it should feel, then he will eventually be able to start to connect the two and accomplish the task (this is why martial arts works). As far as shoes are concerned, velcro shoes are far more worth it than the effort and frustration to have laces. Even I have velcro shoes and Daddy Monkey just replaces all his laces with elastic laces that he never has to tie. Pick your battles. So all those people that said tying shoes was some required milestone for kinder or 1st grade or something? Well, this is one reason why a school environment is not suitable for Big Monkey.

Visual Processing Disorder: This is a possible diagnosis because it still needs to be confirmed by a developmental ophthalmologist. We already have our appointment set for this. So a VPD has nothing to do with actual vision. In fact, Big Monkey has better than 20/20 vision. He is red/green deficient, but that doesn't play a roll in this disorder either. A VPD is a decreased ability to understand the information that is taken in through the eyes and affects the interpretation of what is seen. It can affect ones ability to perceive objects' positions in space which can directly affect reading and math. For example, VPD can make it difficult to see words and numbers as separate units. The equation 1 + 2 is three distinct symbols/units, but with VPD using the spacing to separate out these units can be very difficult or even impossible. Imagine how long it might take you to do a math problem if you had to spend extra time figuring out if what you were looking at is one number or 3 and then figure out how they relate to each other. It can affect reading in a similar way in that separating out words can be a challenge. Of course that means writing can also be impacted as a huge portion of writing effectively is seeing what you have put down on paper. VPD is of course more complicated than this, but what I have described is an effective overview. If the VPD diagnosis is confirmed, there are exercises that Big Monkey can do to train his brain to take in visual information differently. Basically, physical therapy for the eyes. Everything I have been told is that these exercises are hard, uncomfortable, and not enjoyable. However, they are effective if done as prescribed. VPD will be a journey for sure.

Auditory Processing Disorder: So after reading about VPD, I'm sure you can guess that APD is more or less the same concept except for the hearing sense. We are going to retest Big Monkey's general hearing, but his last exam showed normal hearing. So his APD is more likely his brain's inability to properly process and perceive the auditory signals coming in. His APD becomes especially bad in noisy environments (any place with a lot of background noise). For us it often displays as inattentiveness, lack of response, or Big Monkey asking "what?" a lot. It also means he struggles with following multi-step instructions. He just cannot process and remember what you asked him to do (see how this could potentially mimic ADHD?). Daddy Monkey suspects he has something similar and gave a great description of one aspect of APD the other day. In a place with background noise (a restaurant, bowling alley, somewhere with a TV on in the background, etc), if you try to talk to them they sometimes appear to space out or look like they are concentrating but then have to ask you several times to repeat yourself. Often they never hear everything you say. He described it as hearing the last quarter of my sentence but then having to guess at what the first 3/4 of my sentence was. Can you imagine how wrong that could go? Forget it if you talk to them when they aren't actually looking at you either. Apparently it is also much harder to process sounds over digital devices like a phone or computer as well. It's no wonder Big Monkey often can't recall things he has been told. It is amazing that he loves to be read to though and learns best with video based instruction (although those sounds are usually reinforced with visual cues as well).

There are things we can try for APD. I haven't exhausted all my research on this subject yet, but we are currently looking into two items that may be of benefit. First, there is an audiologist just outside Denver, CO that offers a filter (passive device) that is fitted and worn in one ear. Think of it like an ear plug that allows sound through. The basic idea is that the filter slows down the auditory input coming into one ear while the sound enters at the normal speed into the other ear. Apparently having the auditory input coming in at two different speeds gives the brain access to more auditory cues and helps many APD people pick up on more sounds and understand better. It does not work for everyone and does not actually train the brain to do anything (you can't train the brain to hear sounds at 2 different speeds on its own). Some kids outgrow the need for the filters, some do not.

A second option that is a relatively new idea for APD sufferers is low-gain hearing aids. These are low power hearing aids with directional microphones that are completely adjustable and customizable. They are able to directionally amplify sounds as well as dampen background noise. They can be adjusted based on needs and can even potentially be adjusted to help the brain learn to hear on its own. Essentially, eventually he could maybe be weaned off the hearing aids. They can also have bluetooth capabilities to connect to things like digital mics so that say, in college, he could have his professors mic'd directly into his ear if needed. We see a lot of potential benefit with this option and are looking into a 6 week trial of hearing aids to see if we notice any improvements before we make any decisions (I love that there is essentially this risk free way of seeing if this is a solution for us). I will be sure to keep progress on that updated here.

Dysgraphia - Dysgraphia can have many causes, but in general is a difficulty with written expression. It can manifest as poor handwriting, difficulty spelling, and difficulty getting ideas translated into written expression. In Big Monkey's case, it is probably partly related to all of the learning disabilities already listed above. Poor motor coordination will make it hard to write. VPD will make it hard to read and learn to spell as well as read what you are writing. Maybe if those things are address, some of the dysgraphia will get better. However, accommodations for this are fairly simple. Big Monkey just does most of his writing on the computer as typing now. Writing with pencil and paper is just too exhausting and results in work that sounds like a first grader was doing the writing (super simple sentences, simple ideas, etc). He has a lot more complex creative skills than what he can get onto a physical piece of paper. However, even writing via typing is not quite at grade level for Big Monkey. So we're working through these issues.

Dyslexia - Finally dyslexia. Most people have at least heard of dyslexia. However, most people's understanding of what dyslexia is only accounts for a small portion of the symptoms associated with dyslexia. Most people understand that it is the inability to read well and usually is from mixing up letters. That's part of it, but dyslexia is so much more. Big Monkey has what is called stealth dyslexia. Why is it stealth? Well, because he is still able to read WAY above his grade level. Big Monkey is in 5th grade and has a reading ability of somewhere in college level. He can read novels and things with a lot of context very easily. However, give him a single sentence (i.e. a multiple choice question, a line or two of instructions, or a very short informational passage with not a lot of context) and he is VERY likely to miss words, mess up words, and not have enough context to fill in the gaps. So that multiple choice question that asks to tell "which animals are NOT included in this biome" has a good chance of being answered as "which animals are included in this biome." See the problem here? He'd never know that he read the question wrong because you can probably guarantee one of the choices aligns with what he thought he read. This results in test scores that can severely underestimate his abilities as well as impact his grades. This is not just about slowing down either. Big Monkey takes FOREVER to complete tests (they give him 2 hours to complete his yearly standardized tests and they routinely take him 3 hours). Taking more time can help some, but it doesn't guarantee he reads things correctly. We can get accommodations for things like having access to headphones and tests that read him the questions. This works fairly well as long as the testing environment is quiet (see APD above).

Some of Big Monkey's learning disabilities can be addressed with therapies. Others will have to be addressed with accommodations via a 504 plan. People may be used to a 504 plan being used in a school setting and wonder how this helps since we homeschool. Basically, the 504 will follow him through school. It will help him with state testing that our homeschool charter requires as well as give us a jumping point for requesting accommodations for college board testing like SATs. He might need extra time, a computer for essays, ability to wear his hearing aids (yes, you have to get accommodations for this for testing so they don't think you are cheating), access to auditory cues for questions, requests for breaks so he can give his brain a short break (everything is 2-3x more work for him to process which is exhausting), etc. So setting these expectations in place now is important so we cannot be told in the future when the work is a lot harder that we have managed fine so far.

All of this also explains so much. It may explain Big Monkey's recurring headaches, constant exhaustion (although he will also be undergoing a sleep study just to be sure), the appearance of "laziness" (he is in fact, not lazy at all but is instead working harder than any of us to do less than the rest of us), his clumsiness and lack of physical coordination, his struggles and tears over math, and his inability to hear (or as I thought, listen) to me. I feel a little bit of guilt over the fact that it took us almost 11 years to identify these things, but at the same time, they have explained to me that he is extremely good at compensating. That made it even hard for the educational psych to tease out what was going on. It took 2 psychs almost 2 years (no evals over summer though) to finally give us a full picture of what was happening. For that I am thankful even if all the things we need to do now sound exhausting.

Many parents believe that they would love to have a gifted child. Getting into the gifted program is sometimes seen as this huge goal. Sometimes people think that having a gifted kid means things must be easy because your kid is so smart. It's a great goal, and having smart and/or gifted kids is a wonderful thing. However, having a gifted kiddo is a double edged sword. It is both a blessing and a curse. Unlike a neurotypical child or even a high achieving child, a gifted child can struggle a lot. They often do not fit into normal social or educational situations/environments. Gifted kids often struggle to relate and connect to their same-aged peers and thus struggle to make friends. These kids often are not challenged enough and therefore act out with disruptive behavior out of boredom. 2E kids have all these ideas in their brains and these abilities and yet struggle with issues that make basic functioning in life hard. They never stop asking questions, challenging you, seeking more, needing more. Some days it is utterly draining and rewarding all at the same time. Sometimes people think that when a parent says "I have a gifted child" that they are saying "my child is better..." Don't be quick to judge. While some parents may be just bragging, more likely than not, the parent is just looking for a shoulder to lean on as parenting all types of kids is tough work.

I will be forever dreaming of being back on this beach

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.

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 

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.

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.

OIT

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. 

Loss

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.

OCD

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. 

Hypothyroidism

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.

Infertility

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.

Time for an update!

So we've been busy since October. Doing what? Living life of course! Our journey is still not quite over, but we sure have been enjoying the freedoms that we have gained thanks to Dr. R.

From our last trip in April

The 2015 holidays were quiet this year, but very enjoyable. Most of winter could be described this same way. We did introduce the monkey boys to snowboarding this year and they LOVED it! Little Monkey is a natural and a bit of a terror on the hill. Watch out when he's coming down because he just goes straight down. Big Monkey is a tad (understatement) more cautious. What a wonderful thing to do as a family, and hey, after our last trip I made peanut butter and jelly sandwiches in the car for on the way home since we boarded through lunch and were starving. Big Monkey opted for an almond butter and banana (he still does not enjoy the taste of peanut much), but I made them all without a sink and soap and water to scrub my hands. That would have spelled big trouble two years ago.

February? Trip

Spring has been a little busier, specifically this past month. We decided about 8 weeks ago that we were going to take a week long trip to Disneyworld! Woot! Nothing like trying to plan a trip just 8 weeks before you leave. Better than our 3 week planning we did for our Hawaii vacation two years ago, lol. Apparently, we don't plan ahead when it comes to vacation.

My Monsters

The trip was great. We opted to fly Southwest because prices and times were so much better than the other airline options. I am still a major JetBlue fan due to clean planes and great service, but sometimes they are just not convenient for where I want to fly. Southwest used to be a thing of my nightmares before. We've flown with Big Monkey on Southwest once sometime way back when he was like two. We used to have to board super early, wipe everything down, make sure he still kept his hands to himself, request no peanuts be served and pray that no one opened their own bag of peanuts next to us (or behind us and then reached over the chair and brushed his head as they got up to use the bathroom). Nightmares I tell ya. The one time we did fly, Big Monkey still have a hive on his face when we landed. Just one hive, but it told me I had missed something. He had still touched something. So we stopped flying Southwest until this trip.

This trip, we boarded with our boarding group and I did not wipe anything down. The boys still sit in their car seats when they fly, so touching stuff is still minimal, but I no longer have to worry. They served peanuts. We didn't ask for an announcement. In fact, I didn't even notify the airline of his allergy. We were just passengers on a plane and nothing more.

At Disneyworld we ate anywhere we wanted. I must say, Disney is and always has been fantastic with food allergies. I still had to notify restaurants of my shellfish allergies so that I could identify what I could and couldn't eat, and the allergy menus are so detailed and all allergy dishes come marked and are cooked separate. They have separate prep boards, bowls, etc. There were a few places that we notified them of his peanut allergy more because we needed to make sure we knew WHAT he was putting in his mouth, not so much that he couldn't eat it. I just try to keep track of his consumption, especially in a new place on a different schedule when I might need to be watching for his body to react unusually. He ate what he wanted, when he wanted, and where he wanted though. It was fun and delicious. Yes, I went to Disneyworld to eat food, lol.

Kylo Ren at Hollywood Studios - Little Monkey was not 100% sure

The boys had a blast and loved all the parks. Strangely enough, Big Monkey still remains convinced that Epcot is his favorite park. Mommy and Daddy Monkeys vote for Animal Kingdom (that place is GORGEOUS and the safari ride is a blast!) and Little Monkey stands firm that Magic Kingdom is bar far better than the others. I don't blame him (although I still say Disneyland is better than MK - no one shoot me).

Seriously, Big Monkey loved the culture and garden festival at Epcot (history geek)

Now we are home and getting ready to head into summer, if summer weather ever chooses to grace us with it's presence. I hear from friends that summer made a brief appearance while we were gone. Then it disappeared. Boo. I want to use the pool.

Peanut has been going well. Overall, we have gained a lot of freedom. It hasn't been a 100% smooth ride. In fact, we have seen a few reactions that have been our scariest to date. They still pale in comparison to what some allergic individuals experience, but still a reality check that we really needed OIT. Since graduating, Big Monkey has had a handful of mild hive reactions. Most have been about 3 hours after consumption, with one or two happening immediately. All easily resolved with some antihistamines. Two reactions in particular scared the pants off me (well, the first one did. I was more familiar with it the second time it happened).

Friday, March 7 was like any other ordinary day. Daddy Monkey went to work and the boys and I started on our day with breakfast. Friday was 60 peanut day, so Big Monkey ate breakfast and then had his peanuts. This particular day he had half his 60 dose in the form of peanut butter on toast and the other half as peanuts. He ate his peanut butter on toast. I looked at his face to find some tiny hives around his mouth. I thought, crud. He's only half done. I'd seen these little tiny hives with peanut butter before. Sort of like it sticking to his skin irritated his skin. So he stopped eating and I wiped his face and hands with a wet cloth. By the time I put the cloth back down at the sink and came back, his hives were almost gone. My mommy gut was sort of screaming at me to not have him eat the other half of his dose, but my brain said he's done it before and the hives are gone so just get it over with. Yeah, big mistake on my part. I will now always listen to the mommy gut. He ate the other half and was fine.

Until 1.5 hours later. Big Monkey comes in from the other room where he was playing Legos and he says he has a funny whistle and something is wrong with his voice. His whistle was a slight wheeze and his voice was cracking. It sounded like one might sound when they have a cold and have phlegm stuck in the throat preventing him from speaking clearly. Then he coughed and it sounded wet with a rattle. Again, like a child might sound when sick. I could see the worry in his eyes. He knew something wasn't right. I told him I needed to give him his medications and he agreed (he never agrees to those meds so easily because they taste terrible). I knew he didn't feel right then. So he had 2 antihistamines and an oral steroid. The epi pens stayed in hand and I reached out to my friends that are also fellow patients. They waited with me as I waited to see if I would need to epi Big Monkey for the first time. I wouldn't have hesitated to use the epi if breathing was involved, if another symptom appeared, or if the meds hadn't started working almost immediately. For most people without the extensive action plan we have, I would say this would be a case to use the epi pen immediately. We sat in front of the TV for the next 2 hours while I waited and watched. He was fine.

We have no idea what triggered this reaction. He had eaten his 60 the week before. He had eaten peanuts almost every day that week (not a lot, but a good amount). He was not getting sick. He didn't appear to be tired (but then again, this is the kid with insomnia so I can never be sure he's not tired). Dr. R instructed us to make sure he was getting at LEAST 8 peanuts each day and to try to eat way more than that most days. So we did our best to increase the amount daily and make sure that we didn't skip doses. The next weeks went fine. In fact, everything went fine until after our trip.

I will admit, traveling to another time zone and running around theme parks for 5 days in the Florida heat made dosing a little difficult. Since Disney is so good with food allergies, I noticed that peanuts were not exactly everywhere, especially not in forms that Big Monkey would actually eat. I took peanuts for him to eat every day, but mornings were so hectic getting up, getting breakfast, and getting out the door that I often forgot. Hey, I even left my purse in the room 3 different times and had to go back for it (it had the med kit in it, so no, I couldn't just go without). Then I'd remember, but we didn't get back to the room until late and Big Monkey was exhausted. We know how not well he does with peanuts when exhausted, so no way was I going to give him peanuts right before bed exhausted and potentially ruin our vacation.

So I knew when we got home that we were a little low on our consumption. I spent the next few days trying to ramp his consumption back up to larger and larger quantities, not doing this on the day my mom had to watch him alone while I was gone. He did fine with all those doses. So on Sunday I gave him his 60 (actually a few shy of 60, but close). He ate them with a pout. He was fine until 3 hours later. He had gone out into the man cave with Daddy Monkey. He was calm, but he was out vacuuming up the man cave/shop. This was probably not a good activity post 60 after a busy week. I have a feeling it led to allergy overload on top of Big Monkey still being slightly off in his sleep. He came in with 5-6 hives over various parts of his body. These were not tiny, but also not huge. About the size of a smaller mosquito bite. That's bigger than his normal hives, but not in epi-pen territory yet. I gave benadryl and sent him for a shower to get the dust bunnies off. When he got out of the shower, the wheeze and wet cough had set in. The hives were still there. I added the second antihistamine and the oral steroid and we waited. Things improved quickly, but poor Big Monkey was all drugged up and sort of out of it for the day (and the next day too really).

New instructions were to make sure that we are really pushing his body between the doses of 60. We need some major variability in amounts. So we will now do small amounts and large amounts. Basically, we will sort of be adding additional exposures to 60 peanuts. This is not the same result for everyone. Remember that Big Monkey still has a long way to go to be "normal." His IgE is still very high and it's going to just take time and exposure to bring that down. The lower it gets, the less sensitive he will get and the more variability and flexibility we will get. It's sort of like we are still going through OIT and teaching his body to calm down even though we are not increasing his doses anymore.

Reactions and all, it is still worth everything we have done. He pretty much never reacts to smaller doses or cross contamination. He can eat a peanut butter granola bar with no issue. He can be around other people eating peanut butter and jelly sandwiches. He could accidentally pick up his friend's peanut butter and jelly sandwich and eat the entire things instead of his almond butter sandwich (a scenario that is 99.999% not likely to happen since Big Monkey hates sandwiches, but still) and be fine. Sixty peanuts is approximately 3 tablespoons of peanut butter. That is a LOT of pb to fit onto a sandwich. Like make me gag when I try to eat it amounts, in my opinion. So we are still very safe post OIT. One day maybe his IgE will hit zero and then he won't have to worry so much about how many peanuts he eats and when. Some of Dr. R's patients (those that have been with Dr. R for a very long time and have IgE of zero) only dose once a month with normal consumption in between. So there is still progress to be made. Until then, we are still thrilled with our decision and the freedom we have gained.

Until next time!

Animal Kingdom - Mt Everest