Tuesday, August 18, 2015

Biannual Update - Yikes!

So it's that time of year again! Time for my biannual update. Doh! I really need to work on that as a twice a year post is just not acceptable, especially as more and more people ask about my blog due to our OIT success to date. My husband has suggested that I turn this blog more into an OIT information dump and share my experience and all the knowledge I have picked up along the way in the past few years of this journey. I just may have to do that, so stay tuned for future posts to learn more!

Anyway, where are we today? We are making giant strides! Our last appointment with our amazing doctor was at the beginning of June. While we were silently hoping that maybe, just maybe, we would skip from maintenance step one to graduation, we knew that there was a good possibility of a step between the two. That is exactly what we did.

Big Monkey went into the appointment consuming approximately 15 peanuts a day for a total of almost 4 months. He did great on that dose. Not a single reaction that I can remember at this point. Very uneventful. So we went into the appointment unworried, and rightly so. The biggest fiasco that happened at that appointment was that there was no ice cream in the freezer (Big Monkey's chosen dosing vehicle for the office that day) and he was not going to participate without the vanilla ice cream. Thank goodness for the super amazing nursing support staff. They went to the cafeteria and bought Big Monkey a tiny vanilla ice cream. It was the good stuff too, not random hospital brand. So ice cream in hand, Big Monkey updosed to 25 peanuts without issue, and we were in and out of the office in 2 hours with instructions to return in 4 months.

So we took off for a little vacation time and some kid centered fun at the beach. We had a blast, but sleeping in different places is not Big or Little Monkey's easiest task and we lost several hours of sleep over the course of a few days. Then on day 4 of 25 peanuts, Big Monkey had a reaction. Thankfully, it was mild. Just hives on his chin within 20 minutes of his dose one morning, but it meant a 24 hour round of several medications to keep everything in check. Too bad he hates the taste of one of the medications. The way he acts about it would make you think I was forcing gasoline into his mouth. So between this reaction and the one in Hawaii, I learned that Big Monkey does not dose well when he is exhausted and stressed.


This event also brought up two other important thoughts in my mind. First, Big Monkey is still allergic. He has not "just outgrown" his peanut allergy like some may think as we breeze through this process relatively uneventfully. Nope, he is still very much allergic. It is a good reminder to stick with our dose and only our dose until we get clearance for more because anything over could possibly be too much for him to handle. Eventually he'll be at such a high dose that his reacting immune cells will be so saturated that they will no longer react, but we aren't there yet.

My second thought was about other OIT protocols and their end goals. Basically, there is a discussion within the OIT parent/patient community about why some protocols differ so much and is there really a difference in the level of protection that each protocol offers. After this last reactions, I firmly believe that the answer is yes, different protocols offer different levels of protection. There are a few offices out there that take patients up to 3 peanuts a day. They consider this "bite proof." At bite proof, if you accidentally take a bite of something that contains peanuts, you are very unlikely to react and will be protected. This is great as it eliminates contact reactions, but could you eat the entire peanut butter cookie and be safe? Probably not. Then there are other protocols that take patients up to about 12 peanuts a day (some are 12 once a day and some are 12 twice a day I believe). These protocols then have patients remain on that dose for an extended period of time (some for up to a year). Then they are required to pass a 24 peanut challenge, which basically means they need to consume 24 peanuts at one time without any reactions. Most pass and then some of the protocols allow for free eating after the patient passes the challenge. Here is where I struggle with this one being the best protocol for "free eating" of the allergen. Big Monkey essentially passed a 24 peanut challenge because he at 25 peanuts in the office with zero issues, and I mean zero issues. Then he ate 25 peanuts every day for the next 3 days, again with zero issues. Then on the 4th day he ate 25 peanuts and had a very visible reaction. So on the 4th day he failed the 24 peanut challenge. So even though Big Monkey "passed" a challenge, he was not really fully safe for free eating (reality is 25 peanuts is a whole lot of peanuts for one serving, so maybe it's not such a big deal for most consumption?). There have been a few reports of patients (not Dr. R's patients) having full anaphylactic reactions even in maintenance (so after they pass the challenge) and people are puzzled, but maybe this is why. Maybe the 24 peanuts is just not a high enough dose to desensitize the body enough to freely eat the allergen. Dr. R seems to agree, and his protocol reflects this.

25 peanuts made into a cluster is the size of my palm
Even at 25 peanuts, Dr. R made it very clear that we should still be asking about peanuts and peanut oil at restaurants. While he chuckled in amusement at my story of how I sometimes now forget to ask about peanut oil until the fry is posed to enter my son's mouth (freeze kid! I have to ask first!), he reminded me to still ask. He also reminded me to not go above our 25 peanuts. You see, Dr. R's protocol will take us to more than twice the amount we are currently on. The final and graduating dose is 60 peanuts. That is the challenge we have to pass. Some perspective on just how much that is? That is 3 tablespoons of peanut butter. Using 1-1.5 tablespoons of peanut butter will make a very gooey peanut butter sandwich. I doubt that Big Monkey will encounter a meal very often that contains that much peanut! In Dr. R's experience, there is also the benefit that such a high amount does not need to be consumed every single day. This couldn't come at a better time since Big Monkey has basically decided he doesn't really like peanut butter or peanuts unless they are in ice cream (really??). So not having to dose with a certain number of peanuts every day is going to be a lifesaver. He will still need to consume peanut products several times throughout the week, but a peanut butter granola bar or a peanut butter cup is far easier to choke down than 25 or even 60 peanuts! That is hopefully where we will be come October. Just in time for Halloween. So maybe this year he can go trick or treating and actually eat any candy out of his bag. And maybe for once he and his little brother will not shed tears because they accidentally picked the peanut butter cup and mommy will have to take that away when they get home. Yes, that has been the reality on Halloween in past years. Not this one if everything goes as planned.

The freedom to eat any ice cream treat from the zoo that we wanted (that's ice cream frozen into a mango)
For now, we choke down the 25 peanuts and occasionally add sprinkles to our peanut butter on toast to make it more palatable.

Do-it-yourself sprinkles to take the dislike out of peanut butter on toast in the morning
I must say that even though we haven't "graduated" and we are not clear to consume any peanuts beyond Big Monkey's dose, we have gained so much freedom already! It has been life changing in such a short amount of time. Well, maybe 20 months wouldn't be considered a "short" amount of time to some (Dr. R's average for OIT is only 12-14 months, so apparently we're "special"), but in the grand scheme of life, this has been short. This summer Big Monkey attended his first summer camp (sports camp) and had a blast. He also attempted ranch camp, but only made it for 2 days out of the week because he picked up some cold germs from sports camp the week before and colds still hit him hard. It is still great progress. 

Snack time at sports camp!
Otherwise, we've been enjoying a rather uneventful and wonderful summer full of swimming, 

Captain Drench 'em
We even went camping where it felt like we were in the middle of nowhere. 

Until next time...

Tuesday, February 17, 2015

September to February in a Nutshell

A lot of time has past yet again, sorry. Things have been a little bit busy since September, but all is good! No news is good news around here. Although when the news is really good, then I post! We have hit that really good news stage. More like life is really changing stage.

We did a whole bunch of stuff between the September post and our next updose appointment. Daddy Monkey and I ran a 5K through Daddy Monkey's work.

I fractured my foot during said 5K (possibly before, but that was the day the pain became so bad I could no longer walk or bear weight on my foot). Fun stuff! I spent 9 weeks in that boot, and it has taken me almost exactly 5 months to get back to running 3 miles (and I'm still a half mile shy of that goal, really). Boots are sexy even if they don't match, right?

Then there was Halloween. The boys carved their own pumpkins all by themselves, well sort of. They got tired about half way through and had me finish. We carved them the weekend before Halloween and they rotted within two days. So I had to carve them again the morning of Halloween. I carved a total of 5 pumpkins this year. Yeah.

But the excitement was worth it, and yes, Daddy Monkey is a man being eaten by a shark.

There was some school in there somewhere too. We have done lots of projects, learned a lot of new skills, and tried out several new curricula. Big Monkey is just a few short months away from completing kindergarten! I think we have finally decided what Big Monkey likes the best and what we will likely use for next year. We are currently trying out Time4Learning (Big Monkey especially loves working on the computer), All About Reading (I finally found a reading program the boys are thrilled to do!), All About Spelling (hoping it is as well loved as the reading version), R.E.A.L. Science Odyssey (Big Monkey would use any science program really), and then maybe History Odyssey.

Even the toys get in on the learning fun. We were building geometric shapes and Dragon decided to roast marshmallows.

Now on to OIT news, as many are reading just for that. Since my last post there have been two updoses with Dr. R. The first happened at the beginning of December. Almost exactly one year after our start date, Big Monkey ate his first real peanut! We were on peanut flour before that increase, so I'm not sure exactly how big the jump was, but he went home eating 6 whole peanuts. It was a struggle to convince him, even with Daddy Monkey and Little Monkey along for the visit. He made all three of us eat a peanut, and then he still rejected them. So Dr. R broke out the big guns and brought in the peanut M&Ms. Who can turn down a peanut M&M? Apparently Big Monkey can. We finally just had to nod and agree that they tasted just like regular plain M&Ms. Yes, baby, just like plain M&Ms, uh huh. I don't lie to my kids, except this time. We were desperate, and we knew he would like them just fine if he actually tasted them. So he finally picked his favorite color, blue, and ate it. His eyes lit up like a kid in a candy store. "These are really good!" Problem solved.

Oh wait, there was more life that happened between the December and February updoses. We ran home to quickly celebrate Little Monkey's 4th birthday and prepare for spending Christmas with family in the mountains.

We enjoyed a lovely white Christmas.

Sadly for us, our beloved Papa Monkey went home to be with God on December 26th. This was the last day we spent with him, and we are forever grateful that he looks so happy and that we got these precious moments with him.

We again traveled home to squeeze in Big Monkey's 6th birthday before returning to Grandma Monkey's house to help plan Papa Monkey's services and lay him to rest.

On January 8th, we said goodbye to a wonderful man and one of the most important people in my life.

Other than battling what we think was influenza in early January, the rest of January and beginning of February was relatively quiet. We all really needed the downtime at home.

Then on to this week! We made the long drive again for what we hoped would be a very important updose. Dr. R did not fail our expectations on that one. We went into the office and increased to 15 grams, or approximately 15 whole peanuts. Thankfully, Big Monkey gladly ate all 15 with a small helping of chocolate ice cream (thank you Dr. R for having a lot of big guns in that hospital peanut kitchen!). No, there are no photos of this because when I am with Big Monkey in Dr. R's office, my main concern is having a safe and successful updose as well as talking to Dr. R about the future and our plan (it seems to change every time we go in, so this is important).

What is so important about 15 grams? Well, it is considered our "maintenance dose." This means we will no longer be doing bimonthly updoses. We will stay at this dose for about 3-4 months to let his body adjust. It was still a huge jump from where we were at, so we will be watching him closely for the next few weeks, but if all goes well, then things start to change. In one month, I can begin to wean Big Monkey off one of his daily antihistamines. His nasal spray and second antihistamine should soon follow. That is the biggest change for now. It seems like something small, but a medicine free child would be absolutely wonderful! I think the best quote of the day was when Dr. R said (in response to my asking if we could dose in peanuts, m&ms, peanut butter, whatever), "Sure. If you want to order Thai food and have that as his dose, go for it. Just don't let him consume more than his current dose." Really?? Talk about freedom. Of course, even bigger changes are coming this summer.

So if the next 3-4 months are uneventful and we have no reactions, then we will return and challenge to a higher dose. There may actually be two more challenges involved, or we may just jump to the higher dose at the next visit. I believe it all depends on what happens over the next few months. These challenges are similar to the updoses we have been doing all along, except they are much bigger jumps with no small increases in between. Ideally, the 3-4 months on this maintenance dose will prepare Big Monkey's body for the larger dose  (yes, I am purposely leaving the specific grams off of this public post for a number of reasons).

Regardless of which of the two doses we reach at the next visit, the next change will be losing the rest period following our daily dose. Currently, Big Monkey takes a dose and then must remain calm for 60-90 minutes. This means not doing anything that gets his heart rate or body temperature up (no running, jumping, tantrums, hot showers, or outside in the heat). Most of the time we complete our school work during this period of time. It's not much of a problem during the school year, but come summer, it will become a bigger issue. The freedom we have gained so far means that Big Monkey has a lot of plans this summer (i.e. camp) and it will be nice to not have to wake him up at 5:30 a.m. to dose in time to complete the rest period before camp starts. I know Big Monkey is looking forward to not having this restriction any longer.

When we hit the larger dose (I am so hoping it is next time), then things change yet again for the better! Here is a recap of the accomplishments we will have made at that point: no longer contact reactive, no longer need to worry about cross contamination (so items made in the same facility, on the same equipment), no longer doing bimonthly updoses, and no longer observing a rest period. Basically, other than consuming a specified amount of peanut every day and avoiding any additional peanuts, Big Monkey will be like a regular non-food allergic six year old. So how can it get better than this? How about we make him even more like a regular non-food allergic six year old by removing the need to eat a specified amount of peanut every day and by saying he's allowed to eat peanut products at will? That's right, we're talking full inclusion into his diet.

So after passing the large challenge, Big Monkey will be required to eat that dose once a week. That's right, once a week! Then after that he will need to eat something like a granola bar or two somewhere throughout the rest of the week. I believe he will also be allowed to eat any other peanut products that he wishes (maybe not on the day that he has to consume the giant amount of peanut protein, but trust me, even the biggest peanut butter lover would not want to consume much more than what he will need to eat in that one day). Just thinking about this makes me want to tear up with joy. My son at age 6.5 years will finally be allowed to eat ANYTHING HE WANTS!

He will always be required to carry an epi-pen (likely for the rest of his life), but he will eventually have no memory of the days where he couldn't eat the cupcake at the birthday party, gather the Halloween candy from the pinata, eat at a restaurant because it uses peanut oil, enjoy an ice cream because they use the same scoop in all the barrels, fly on a plane without wiping down every surface first (although I may still do this as I have now seen first hand that planes are gross), or leave the park because some kid decided to consume a peanut butter sandwich on the play structure. He will never be bullied because he is the food allergy kid. He will never have to ask a girl to brush her teeth before kissing him (or ask if she's had any peanuts in the last 12 hours). He will not have to live constantly looking over his shoulder wondering if today is the day that somehow he might slip up or that something might get by him and send him to the ER, or worse. It sounds like a doom and gloom outlook, but the truth is, it happens. But hopefully all this means that from here on out, it will never happen to us. Instead, I can worry about him deciding to jump off a roof, ride a motorcycle, go cliff jumping, or some other equally horrifying to your mom activity. And today, I am thankful for that possibility and wish that every single food allergy parent out there could have the same thing. Hopefully one day, they will, and we will have been a very small part in the large number of patients needed to make this reality for everyone.

Congratulations, Baby! You are the bravest little person I know and February 17th, 2015 marks the first day of entirely different options and opportunities in front of you.

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