Week 1 of OIT - what it's like at home
We consider Day 1 of OIT for Brandon a huge success. His body tolerated 6 doses of a kool-aid type solution with minuscule amounts of peanut flour mixed into it. He did not have any adverse reactions such as hives or trouble breathing. And we were able to go home with our first week of doses to take at home. So all in all, a HUGE success!
So what does OIT look like after that initial day in the doctor's office? Here's a bit about how it's been working for us.
The entire process of peanut OIT for our doctor consists of a series of 30 doses of gradually increasing amounts of peanuts. Ideally, you'd finish day 1 at Dose 10, leaving 20 doses to go through, spaced at least one week between each increasing dose, leaving you a process of at least 21 weeks total, or roughly 5 months. We left the doctor's office at Dose 6, leaving us 24 doses to go through, so we are looking at a minimum of 6 months. That doesn't allow for vacations, illnesses, scheduling conflicts, etc., so we are looking at this taking Brandon until at least the end of 2018, possibly into 2019. See my point about this being a marathon, not a sprint?? 😉
As I mentioned in my last post, we received our solution of Dose 6 to take home for our at home dosing. With OIT, you have to take a dose every single day of your allergen. You are desensitizing your body to its dislike for whatever substance you are working on, so you have to train it every single day. With something as potentially severe as a food allergy reaction, you have to be careful to train the body consistently, so that it doesn't 'forget' what to do when it encounters the allergen. Our specific instructions are to administer Brandon's dose between 21 and 27 hours from the previous dose. Brandon's last dose was around 1pm on Day 1 of his OIT, so we got permission from his doctor to give him his next dose at 4pm the next day. During this last week and a half of school, we decided it would be easiest to dose him at the end of the school day.
The rules for dosing also indicate that 2 hours of rest time are observed after taking the dose. This is so that the body can process the allergen, without being taxed by other activity, such as elevated heart rate, increase in body temperature, or the body's use of adrenaline for something other than 'working on' the allergen that was just ingested. We're still working through the specifics of what 'rest time' will look like for Brandon every day (because no, it's not going to be a free pass to watch TV, play video games, or play on his Kindle for 2 hours every day 😉) But we have been cognizant and respectful of the 2 hours every day so far.
On the first day of his home dosing, he rested at home before heading to swim practice. (He practices at 7:00pm, so we knew we would meet the allotted time window for his resting.) The dose itself went just fine: eat a snack, take your dose, wipe your mouth, drink some water, and rest. Easy peasey. I think we were both probably looking for a reaction of some sort . . . . when you're told to watch for something, sometimes your brain can fabricate the symptoms! The immediate symptoms were slim to none - maybe a slight lump in the throat, but no problems breathing. What we weren't expecting - or prepared for, though - was his reaction AT swim, which was 3 full hours after his dose. Brandon got in the pool, and about 20 minutes into his practice, I looked at him grimacing and trying to catch his breath. He hopped out and came over to me and told me he felt like he had just finished his normal swim time plus dry lands practice (calisthenics they do at practice after swimming.) He was huffing and puffing to let his body catch up to the laps he had just completed. Not wanting to push him too much this first week, I told him to stop practice for that day and we went home.
The next day, he experienced similar fatigue, closer to the end of his rest time. He walked a friend home who had been at our house after school who lives two turns down the street from us. It's an easy walk. He made sure to walk, not run or jog. When he got home, he literally collapsed into a heap on the couch and said he felt like he had just run an intense mile. Interesting. 😐 Again, not wanting to push him, I let him rest on the couch, and he opted not to swim at practice that night.
As this first week has gone on with our at-home dosing, we have noticed that his fatigue has gradually decreased. Thankfully! As of yesterday (Monday, one full week of dosing in) he had no symptoms after his dose. 🙌 It's interesting . . . . this is complete conjecture on my part, and I do not have the medical knowledge to support this, so take it for what it's worth. 😊 These are our two take aways from week 1:
1. We think the fatigue may be coming from his body and immune system working overtime to "deal with" the peanut flour. His body has to work so hard to process something that it thinks is an enemy, that it leaves very little room to do much else at first. I called his doctor's office after that first at home dose, and they confirmed that the fatigue is a common side effect. Every kid is different, so it's hard to predict how each one will react, but it's completely plausible that fatigue is common. We weren't expecting *that much* fatigue, but we're new to this, so we're rolling with it and adapting each day.
2. As the week has progressed, Brandon's symptoms have lessened with each dose. This part is *amazing* to me . . . that as we give him his daily dose, his body is ever so slowly learning to accept the amount of the allergen that we are giving it. As the body learns what to do with it, the symptoms and fatigue decrease, and he truly becomes more desensitized to it. It's a mini snapshot of the overall goal of OIT, and it's fascinating to watch. Fascinating.
And so we head into this week, taking his daily dose, and we prepare for his first "updose" appointment this coming Thursday after the end of school. At that appointment, they will give him Dose 7 - the dose that 'tripped him up' on Day 1 of OIT.. Will his body be able to accept Dose 7 at full strength, now that it's accepted Dose 6 for 1 week plus 2 days? We will see. This is all personalized and individualized for each kid. We love how his doctor listens to each kid's experience, accepts what their body is telling us, and proceeds slowly and wisely.
I'll update again after our first updose day this Thursday! Wish us luck and please pray for success ! 🙏
Until then,
Momma Knows Best 💜
So what does OIT look like after that initial day in the doctor's office? Here's a bit about how it's been working for us.
The entire process of peanut OIT for our doctor consists of a series of 30 doses of gradually increasing amounts of peanuts. Ideally, you'd finish day 1 at Dose 10, leaving 20 doses to go through, spaced at least one week between each increasing dose, leaving you a process of at least 21 weeks total, or roughly 5 months. We left the doctor's office at Dose 6, leaving us 24 doses to go through, so we are looking at a minimum of 6 months. That doesn't allow for vacations, illnesses, scheduling conflicts, etc., so we are looking at this taking Brandon until at least the end of 2018, possibly into 2019. See my point about this being a marathon, not a sprint?? 😉
As I mentioned in my last post, we received our solution of Dose 6 to take home for our at home dosing. With OIT, you have to take a dose every single day of your allergen. You are desensitizing your body to its dislike for whatever substance you are working on, so you have to train it every single day. With something as potentially severe as a food allergy reaction, you have to be careful to train the body consistently, so that it doesn't 'forget' what to do when it encounters the allergen. Our specific instructions are to administer Brandon's dose between 21 and 27 hours from the previous dose. Brandon's last dose was around 1pm on Day 1 of his OIT, so we got permission from his doctor to give him his next dose at 4pm the next day. During this last week and a half of school, we decided it would be easiest to dose him at the end of the school day.
The rules for dosing also indicate that 2 hours of rest time are observed after taking the dose. This is so that the body can process the allergen, without being taxed by other activity, such as elevated heart rate, increase in body temperature, or the body's use of adrenaline for something other than 'working on' the allergen that was just ingested. We're still working through the specifics of what 'rest time' will look like for Brandon every day (because no, it's not going to be a free pass to watch TV, play video games, or play on his Kindle for 2 hours every day 😉) But we have been cognizant and respectful of the 2 hours every day so far.
On the first day of his home dosing, he rested at home before heading to swim practice. (He practices at 7:00pm, so we knew we would meet the allotted time window for his resting.) The dose itself went just fine: eat a snack, take your dose, wipe your mouth, drink some water, and rest. Easy peasey. I think we were both probably looking for a reaction of some sort . . . . when you're told to watch for something, sometimes your brain can fabricate the symptoms! The immediate symptoms were slim to none - maybe a slight lump in the throat, but no problems breathing. What we weren't expecting - or prepared for, though - was his reaction AT swim, which was 3 full hours after his dose. Brandon got in the pool, and about 20 minutes into his practice, I looked at him grimacing and trying to catch his breath. He hopped out and came over to me and told me he felt like he had just finished his normal swim time plus dry lands practice (calisthenics they do at practice after swimming.) He was huffing and puffing to let his body catch up to the laps he had just completed. Not wanting to push him too much this first week, I told him to stop practice for that day and we went home.
The next day, he experienced similar fatigue, closer to the end of his rest time. He walked a friend home who had been at our house after school who lives two turns down the street from us. It's an easy walk. He made sure to walk, not run or jog. When he got home, he literally collapsed into a heap on the couch and said he felt like he had just run an intense mile. Interesting. 😐 Again, not wanting to push him, I let him rest on the couch, and he opted not to swim at practice that night.
This is our daily record of his dosing, timing, and reactions; overall schedule, and current dosing instructions. We keep this front and center on our refrigerator.
As this first week has gone on with our at-home dosing, we have noticed that his fatigue has gradually decreased. Thankfully! As of yesterday (Monday, one full week of dosing in) he had no symptoms after his dose. 🙌 It's interesting . . . . this is complete conjecture on my part, and I do not have the medical knowledge to support this, so take it for what it's worth. 😊 These are our two take aways from week 1:
1. We think the fatigue may be coming from his body and immune system working overtime to "deal with" the peanut flour. His body has to work so hard to process something that it thinks is an enemy, that it leaves very little room to do much else at first. I called his doctor's office after that first at home dose, and they confirmed that the fatigue is a common side effect. Every kid is different, so it's hard to predict how each one will react, but it's completely plausible that fatigue is common. We weren't expecting *that much* fatigue, but we're new to this, so we're rolling with it and adapting each day.
2. As the week has progressed, Brandon's symptoms have lessened with each dose. This part is *amazing* to me . . . that as we give him his daily dose, his body is ever so slowly learning to accept the amount of the allergen that we are giving it. As the body learns what to do with it, the symptoms and fatigue decrease, and he truly becomes more desensitized to it. It's a mini snapshot of the overall goal of OIT, and it's fascinating to watch. Fascinating.
And so we head into this week, taking his daily dose, and we prepare for his first "updose" appointment this coming Thursday after the end of school. At that appointment, they will give him Dose 7 - the dose that 'tripped him up' on Day 1 of OIT.. Will his body be able to accept Dose 7 at full strength, now that it's accepted Dose 6 for 1 week plus 2 days? We will see. This is all personalized and individualized for each kid. We love how his doctor listens to each kid's experience, accepts what their body is telling us, and proceeds slowly and wisely.
I'll update again after our first updose day this Thursday! Wish us luck and please pray for success ! 🙏
Until then,
Momma Knows Best 💜
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