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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Wednesday, September 10, 2014

Battling Cold Season

Cold season peaks in September, and it has been kicking our butt since July (well, maybe even as far back as May). When we last visited Dr. R in May, Big Monkey showed up at the office with a cold and raging ear infection. Thankfully, we were still able to increase our dose at least a little. I could have never predicted it was the start to a somewhat challenging summer in the sickness department, especially since summer is usually our healthiest time.

Picnic lunch during our first week of school
June went well, but July brought around cold season in full force. Big Monkey started with some GI (gastrointestinal) issue. It settled in just a few days after a dose increase, so we thought it may have been related. Dr. R had us cut our dose in half for a few days (3 days? 5 days? I can't remember now). It seemed to solve the problem, then Little Monkey (we are now referring to him as Little Monkey instead of Baby Monkey out of respect for the fact that he really dislikes being called a baby anymore) came down with the same GI issues about a week after Big Monkey. Well, thank goodness it didn't set us back any on dosing. We increased back up to our normal dose after the few days at a half dose with zero issue. As soon as Little Monkey was well again, Big Monkey got hit with a sore throat and snotty nose. Really? No fever was involved so we held steady at our current dose and just delayed any increases until he was well. That passed around the house, but was gone in about a week.

I think I managed to keep the boys well for 2, maybe 3 weeks (it is all a blur at this point), and then Little Monkey threw up and spiked a fever. Great, the dreaded fever. I bleached, did my best to keep the boys separated for a few days, and attempted everything to hopefully keep Big Monkey from getting this one. Well, attempts didn't work. Four days later Big Monkey threw up. Thankfully, this was a very mild and very short GI bug. Also, thankfully, Big Monkey got sick at 11pm. So we skipped his dose the next morning and went right back to a normal dose the next day. Unfortunately, this bug hit the week before we were scheduled to visit Dr. R again. So we had to reschedule for 3 weeks later. This was our first delay since starting in December 2013. I think that is a really good track record.

Creativity was practiced while we were contagious and stuck at home. Little Monkey's helmet, shield, chest plate, and sword made from zoobs
Trip to the circus
Dr. R was squeezing us in during the lunch break just to make sure we could get in sooner rather than later, so I became hypervigilant the week before our rescheduled visit to Dr. R's office (can you blame me after having sick kids off and on for practically 2 months straight?). We pretty much isolated ourselves to the house for a week and my poor husband got sent to work with hand sanitizers and lectures about good hand hygiene (he got lectured despite having fairly good hand hygiene). I was determined that we were going to make it to this next appointment and be well when we got there. And you know what? I was successful. Even with a trip to the circus just days before.

Little Monkey at the circus
When Dr. R walked into the room at our appointment, his first words were, so are you guys all well today with a little chuckle (I have to email him EVERY time Big Monkey gets sick so he can advise us on how to proceed safely). I assured him we were well, and even he asked if I had any idea why we had suddenly gotten sick so often. I wish I had the answer for that, but I don't. I partially blame daily swim lessons all summer, but I think that's not the whole answer.

I'd love to say that our office visit was uneventful, but it wasn't. It was a successful visit, but it was a bit challenging. We have hit an amount of peanut flour now where it would be advantageous and a lot easier if we could switch to dosing with whole peanuts (that's right, actual peanuts!). Now remember, Dr. R offered Big Monkey a peanut back in May and he was too afraid to eat it. So I've been talking with Big Monkey about eating a peanut since May. We've talked about what a peanut tastes like (he eats other nuts) and how a the number of peanuts Dr. R would give him is the exact same as the flour he is eating everyday just not all ground up. I truthfully think the peanuts would taste better as the flour has sort of a weird taste. It has a peanut flavor, but with a sort of floury taste along with it. We even set up some bribery (I am so not against bribery in cases like these - this is not an easy task for Big Monkey). A trip to a local natural history museum to see the dinosaur bones as well as a trip to a local ice cream parlor (a first for Big Monkey) was offered. All he had to do was eat the peanuts that Dr. R gave him. Better yet, all he had to do was TRY the peanuts (so put them in his mouth). So even if he spit them out and switched to peanut flour, he would have earned his reward.

Yeah, none of that happened. Instead, there was a fight and a tantrum. This is an emotional journey for us and is difficult for Big Monkey to endure at times. He was all geared up and ready to eat the peanut until he saw it. Then he refused. He also refused the peanut flour in the applesauce and attempted to refuse the peanut flour in melted chocolate. Dr. R was willing to just not updose and give me instructions for later, but considering we drive 7 hours to get there and had already rescheduled, I insisted we work with Big Monkey to accomplish an increase. Afterall, peanut flour in applesauce or melted chocolate is nothing new for him. I was a little surprised that he responded like that at the appointment. Thankfully, Dr. R is a doctor with more patience than I think any other doctor on this planet has (he truly is a remarkable and unique individual). We managed to get Big Monkey to take his dose in melted chocolate. He consumed the equivalent of 2.5 peanuts. He developed a very faint and small rash around his mouth (probably from getting all worked up right before his dose), but it faded within 15 minutes without any medication. He was also exhausted the rest of the day, but otherwise did very well. Success.

We did still go get ice cream as I recognize that this process is not easy for Big Monkey and he needs something positive associated with it. Although, he did not get his natural history museum reward.
We also went home with an updated plan. A very exciting updated plan. We challenged at the office with 1.8 grams. Graduation from the program is 9 grams. Seems like a long ways to go, right? Well, Dr. R thinks that we can reach graduation over the next 3 visits. Amazing news! Of course, it is all dependent on how Big Monkey tolerates the larger doses. My understanding is that 4 grams and/or 6 grams can sometimes cause some issues. I am praying that we paid our dues during those first 2 weeks of this process and that we are now done with "issues." If all goes well, then we will updose to 4grams in early December. Then 6 grams at the next visit and 9 grams at the third visit. Since our visits are usually about 9-12 weeks apart, we have the real possibility of graduating by the end of next spring.

Little Monkey with his ice cream sundae
Of course, this also all depends on how many setbacks we have due to illness this year! I fear that this cold and flu seasons (flu season peaks in January usually) may be a bit brutal considering our summer. Hopefully I will be proven wrong, but Big Monkey cannot get the flu vaccine this year (we have been advised to avoid all vaccines until 4-5 months after completing the OIT program), so who knows what is going to happen. The rest of us will be vaccinated, so hopefully herd immunity will protect Big Monkey this year. Good hand hygiene and avoiding people who know are actually sick will also be in practice here. In fact, we may just avoid crowded places for this cold/flu season to ensure that we have a better chance of completing this program.

So far we do not have a good track record. We were due for another small increase today, but instead Big Monkey woke with a sore throat. Little Monkey has had some terrible congestion for 2 days, so I think it's safe to say that we have been hit by yet another cold this season. I'll take that any day over vomiting though.


First day of school!
PE at our house!
In other news, Big Monkey and Little Monkey started school on August 20! Big Monkey is officially a kindergartener! We homeschool, so it doesn't make a huge difference, but we are enrolled in a homeschool charter program through our state, so there are still things Big Monkey must accomplish. So far he is rocking his studies and enjoying most of it. Little Monkey is technically a preschooler, but often insists on doing the same work as Big Monkey. So he's a little between grades. He's too advanced for the pre-K curriculum that Big Monkey did at his age, but not quite advanced enough for all of Big Monkey's work (he is doing some of it right along side us). So I think I am going to switch him to the K4 program that Big Monkey completed last year along with whatever work he wants to do with us. It will be interesting to see what level Little Monkey is at when it's his turn to enter into the charter school in 2 years.

Enjoying the last bit of summer