Not for the faint of heart
My last blog update was after our first full week of at home dosing, right before our first updose (i.e. increase of strength in the solution Brandon takes daily.) We were hopeful for that first updose appointment, and thankfully, we were pleased with the outcome! Brandon got 'tripped up' on Dose 7 on Day 1 of OIT, which means the doctor determined his body could handle Dose 6 safely, without medicine to mediate any symptoms he experienced when taking it, but not Dose 7. So we took Dose 6 at home daily for 8 days and went into the office on day 9 and tried Dose 7 again. This time, he passed it with flying colors! 🙌 We felt relieved AND excited! We could see OIT working right before our eyes! Just 8 days earlier, his little body couldn't handle Dose 7, and today it could. Seriously amazing. #OITworks 😉
His updose happened on the last day of school, so thankfully we were now into the period of freedom with our dosing schedule. We could adjust it daily as needed, but we needed to follow the guidelines of it being between 21 and 27 hours from the previous day's dose. In other words, we can't deviate more than 3 hours from the time of the previous day's dose. The next few days were smooth sailing, and then we hit a small hiccup on the Monday after school was out. Brandon started having some minor throat reactions with his dose that day (he felt like a slight lump in his throat, he had to clear his throat repeatedly, and the fatigue hit him again.) **Thankfully** those symptoms resolved themselves within about 30 minutes on their own, and they never got severe enough that we had to administer any medication for him. His little body is learning to fight so incredibly well through this process. We're throwing a lot at it, and thankfully, it's learning how to respond well so far. We are learning when he needs a bit of extra rest, and we're taking cues from him and responding accordingly.
With that minor reaction on that Monday, I called his doctor the next day and they decided to scoot out his updose appointment by a week. That's one thing we really, really like about our doctor and her staff. They listen to us, they respond to each patient's needs, and they don't administer 'cookie cutter' treatment . . . . each patient is treated individually, and if they can't pass a dose safely, they slow down the course of treatment. Again, this is a marathon, NOT a sprint. 🏃
We had an out of town family wedding the following weekend, so we had our first experience of traveling with our solution, keeping it cold, keeping it from spilling, and dosing/resting on the road. We gradually moved him up to morning doses over the course of that week prior to leaving. That way, he could dose in the morning and have his rest period earlier in the day, rather than later, so that he could hang out with cousins and have fun the rest of the day. We successfully navigated timing of doses, resting, and long periods of time in the car with no snafus! 👍 (We did have a snafu of leaving a beloved stuffed animal behind in the city that we traveled to for the wedding, but thankfully it was found by the hotel staff later in the week and mailed back to us safely.)
So onward we went! Back from the wedding, we scooted back to afternoon doses because Brandon had early morning swim practice that next week, followed by VBS every morning. No time for morning dosing and resting there! Our next updose appointment was scheduled for Thursday the 14th. The protocol called for upping his dose from 2.0 mL of his current solution strength to 4.0 mL of the same strength solution . . . . essentially doubling his dose. He was a bit nervous about making that big of a jump, but we did it, especially considering that he had an extra week at the current strength under his belt since we skipped the first updose appointment.
When we go for updose appointments, we take snacks, drinks, baby wipes (he likes to wipe his mouth after taking his dose), and several activites to keep us occupied during the hour we're waiting during observation post-dosing. Everything seemed okay at first after taking his dose. But then things got a bit more serious approximately 30 minutes after his dose. We were sitting in the waiting room during our observation period this time, and Brandon told me his throat started feeling a bit 'weird.' He'd had that type of reaction before, so at first I didn't worry too much about it. I was actually talking with the front office staff about insurance questions and billing when Brandon first mentioned it to me. He sat back down but then returned to my side quickly to tell me he felt like he couldn't swallow very easily. In other words, it was a more severe reaction than his more normal, minor throat clearing. The look in his eyes also told me this was a different reaction. 😳 So without trying to panic, I asked the ladies to grab Brenda (the nurse) for me, and thankfully she was right there and she quickly ushered us back to her procedure room. She asked Brandon what he was feeling, he explained, she went down the hall to grab Dr. George, and they quickly came back into the room together. Dr. George said something to the effect of "Let's go ahead and administer epinephrine" and I think Brandon about jumped out of his skin! When a food allergy kid hears the word 'epinephrine,' the first thing they think of is getting stabbed in the leg with an EpiPen - no wonder he was scared! I thought the same thing, to be honest. Panic started to set in for Brandon and he asked me through some tears if he could have Benadryl instead, they both said no, and Brenda proceeded to grab a shot and vial of epinephrine. What we didn't understand was that he didn't have to have the actual EpiPen, but that in-office they were able to administer a 'regular' shot in his arm. Much smaller needle, no need to go into his clothing and thigh. Wshew! Brandon still wasn't thrilled with the idea, BUT, I held him close while Brenda gently coaxed him and quickly gave him the shot in the arm. It was the same dose/amount as an EpiPen, but thankfully he was able to receive it in a much 'gentler' mechanism than the big 'ol EpiPen!
That whole 5 minutes was a flurry of activity to say the least. I cannot tell you how grateful I am that his doctor and nurse were so quick to act, that they were calm through the whole thing, and that they didn't wait to see if he got any worse but that they took quick, decisive action. Within seconds of the shot, Brandon's throat symptoms subsided, he and I both stopped panicking/worrying, and he was fine. Praise. The. Lord. 🙏🙌🙏
Soooooo . . . we had to go back to a room for further observation, and then the effects of the epinephrine hit Brandon. He started shaking like a leaf and got really chilly, neither of which were unexpected, but it was still a whole new experience for him. We stuck around for another hour or so, just to make sure he was okay, and then we were able to go home, with altered instructions for our next week at home on our own.
Since last Thursday, we've slowly stepped him up . . . . we went into the updose appointment taking 2.0 mL, his body didn't like 4.0 mL, so we did 2.5 mL for 3 days at home, and then on Monday we inched up to 3.0 mL. We've done two doses at that strength with no reactions so far, so we are thankful for that. We were scheduled for our next updose this week, but again, out of caution and care for him, we're slowing that down. We will go back in NEXT Tuesday to try 4.0 again, after his body has had a chance to adjust to that middle 3.0 mL dose.
I explained in an earlier post, but I'll mention it again here . . . . our doctor's peanut OIT schedule calls for 30 'updoses' until we get to maintenance. (Maintenance will require Brandon to eat 8 peanuts every day, or the equivalent thereof.) Brandon got through doses 1-6 on Day 1 of OIT, it took his body 2 weeks to accept Dose 7, and we are slowly inching towards Dose 8. If he passes Dose 8 next Tuesday, then we have 22 doses left to make it through. This is a slow process, but we are okay with that. Our end goal keeps us focused on the daily ins and outs, and the long road we still have ahead of us. 😉
There are SO many factors that go into how a body handles OIT. The week before his updose, we had been running really hard . . . . little sleep the over the weekend at an out of town family wedding, up early every day for an hour+ of swim practice, followed by 4 hours of VBS every day. Could his overall fatigue have played into his body's inability to fight off a doubling of his dose? It's hard to say, and we'll never know for sure. But that's part of what OIT is all about . . . . testing your body, trying to see what it can handle, stepping back when it's too much, intervening medically when it's over-taxed, and adjusting as needed.
We couldn't be more thankful for a doctor and her staff who do exactly that for us. Last week's appointment certainly 'spooked' us both a bit, I'm not going to lie. Every time Brandon takes a dose, I know he's thinking about that shot of epinephrine and hoping he doesn't have to go through that again. As am I. 💗 We will never proceed if we feel this is unsafe, and we do not feel unsafe at this point, so we will proceed. Brandon told me that night (after he had calmed down from the epinephrine shot) that the events of that day made him want to press on even more. That's my boy - do everything the best he can and never halfway. He's full throttle in everything he does. Everything. So I'm not the least bit surprised that this is no exception. It also taught him to trust epinephrine . . . . he saw how quickly his symptoms subsided, and he now knows that if he ever needs epinephrine, he can have it, and it works.
Onward we go. We're going to try for that 4.0 mL dose again next Tuesday the 26th. We'd appreciate prayers of coverage for him during that appointment, so that his body can handle the dose without the need for epinephrine again, and that his moldable heart would be strong and brave to face it again. We thank you for that!
Until next time . . .
~Momma Knows Best
His updose happened on the last day of school, so thankfully we were now into the period of freedom with our dosing schedule. We could adjust it daily as needed, but we needed to follow the guidelines of it being between 21 and 27 hours from the previous day's dose. In other words, we can't deviate more than 3 hours from the time of the previous day's dose. The next few days were smooth sailing, and then we hit a small hiccup on the Monday after school was out. Brandon started having some minor throat reactions with his dose that day (he felt like a slight lump in his throat, he had to clear his throat repeatedly, and the fatigue hit him again.) **Thankfully** those symptoms resolved themselves within about 30 minutes on their own, and they never got severe enough that we had to administer any medication for him. His little body is learning to fight so incredibly well through this process. We're throwing a lot at it, and thankfully, it's learning how to respond well so far. We are learning when he needs a bit of extra rest, and we're taking cues from him and responding accordingly.
With that minor reaction on that Monday, I called his doctor the next day and they decided to scoot out his updose appointment by a week. That's one thing we really, really like about our doctor and her staff. They listen to us, they respond to each patient's needs, and they don't administer 'cookie cutter' treatment . . . . each patient is treated individually, and if they can't pass a dose safely, they slow down the course of treatment. Again, this is a marathon, NOT a sprint. 🏃
We had an out of town family wedding the following weekend, so we had our first experience of traveling with our solution, keeping it cold, keeping it from spilling, and dosing/resting on the road. We gradually moved him up to morning doses over the course of that week prior to leaving. That way, he could dose in the morning and have his rest period earlier in the day, rather than later, so that he could hang out with cousins and have fun the rest of the day. We successfully navigated timing of doses, resting, and long periods of time in the car with no snafus! 👍 (We did have a snafu of leaving a beloved stuffed animal behind in the city that we traveled to for the wedding, but thankfully it was found by the hotel staff later in the week and mailed back to us safely.)
So onward we went! Back from the wedding, we scooted back to afternoon doses because Brandon had early morning swim practice that next week, followed by VBS every morning. No time for morning dosing and resting there! Our next updose appointment was scheduled for Thursday the 14th. The protocol called for upping his dose from 2.0 mL of his current solution strength to 4.0 mL of the same strength solution . . . . essentially doubling his dose. He was a bit nervous about making that big of a jump, but we did it, especially considering that he had an extra week at the current strength under his belt since we skipped the first updose appointment.
When we go for updose appointments, we take snacks, drinks, baby wipes (he likes to wipe his mouth after taking his dose), and several activites to keep us occupied during the hour we're waiting during observation post-dosing. Everything seemed okay at first after taking his dose. But then things got a bit more serious approximately 30 minutes after his dose. We were sitting in the waiting room during our observation period this time, and Brandon told me his throat started feeling a bit 'weird.' He'd had that type of reaction before, so at first I didn't worry too much about it. I was actually talking with the front office staff about insurance questions and billing when Brandon first mentioned it to me. He sat back down but then returned to my side quickly to tell me he felt like he couldn't swallow very easily. In other words, it was a more severe reaction than his more normal, minor throat clearing. The look in his eyes also told me this was a different reaction. 😳 So without trying to panic, I asked the ladies to grab Brenda (the nurse) for me, and thankfully she was right there and she quickly ushered us back to her procedure room. She asked Brandon what he was feeling, he explained, she went down the hall to grab Dr. George, and they quickly came back into the room together. Dr. George said something to the effect of "Let's go ahead and administer epinephrine" and I think Brandon about jumped out of his skin! When a food allergy kid hears the word 'epinephrine,' the first thing they think of is getting stabbed in the leg with an EpiPen - no wonder he was scared! I thought the same thing, to be honest. Panic started to set in for Brandon and he asked me through some tears if he could have Benadryl instead, they both said no, and Brenda proceeded to grab a shot and vial of epinephrine. What we didn't understand was that he didn't have to have the actual EpiPen, but that in-office they were able to administer a 'regular' shot in his arm. Much smaller needle, no need to go into his clothing and thigh. Wshew! Brandon still wasn't thrilled with the idea, BUT, I held him close while Brenda gently coaxed him and quickly gave him the shot in the arm. It was the same dose/amount as an EpiPen, but thankfully he was able to receive it in a much 'gentler' mechanism than the big 'ol EpiPen!
That whole 5 minutes was a flurry of activity to say the least. I cannot tell you how grateful I am that his doctor and nurse were so quick to act, that they were calm through the whole thing, and that they didn't wait to see if he got any worse but that they took quick, decisive action. Within seconds of the shot, Brandon's throat symptoms subsided, he and I both stopped panicking/worrying, and he was fine. Praise. The. Lord. 🙏🙌🙏
Soooooo . . . we had to go back to a room for further observation, and then the effects of the epinephrine hit Brandon. He started shaking like a leaf and got really chilly, neither of which were unexpected, but it was still a whole new experience for him. We stuck around for another hour or so, just to make sure he was okay, and then we were able to go home, with altered instructions for our next week at home on our own.
Since last Thursday, we've slowly stepped him up . . . . we went into the updose appointment taking 2.0 mL, his body didn't like 4.0 mL, so we did 2.5 mL for 3 days at home, and then on Monday we inched up to 3.0 mL. We've done two doses at that strength with no reactions so far, so we are thankful for that. We were scheduled for our next updose this week, but again, out of caution and care for him, we're slowing that down. We will go back in NEXT Tuesday to try 4.0 again, after his body has had a chance to adjust to that middle 3.0 mL dose.
I explained in an earlier post, but I'll mention it again here . . . . our doctor's peanut OIT schedule calls for 30 'updoses' until we get to maintenance. (Maintenance will require Brandon to eat 8 peanuts every day, or the equivalent thereof.) Brandon got through doses 1-6 on Day 1 of OIT, it took his body 2 weeks to accept Dose 7, and we are slowly inching towards Dose 8. If he passes Dose 8 next Tuesday, then we have 22 doses left to make it through. This is a slow process, but we are okay with that. Our end goal keeps us focused on the daily ins and outs, and the long road we still have ahead of us. 😉
There are SO many factors that go into how a body handles OIT. The week before his updose, we had been running really hard . . . . little sleep the over the weekend at an out of town family wedding, up early every day for an hour+ of swim practice, followed by 4 hours of VBS every day. Could his overall fatigue have played into his body's inability to fight off a doubling of his dose? It's hard to say, and we'll never know for sure. But that's part of what OIT is all about . . . . testing your body, trying to see what it can handle, stepping back when it's too much, intervening medically when it's over-taxed, and adjusting as needed.
We couldn't be more thankful for a doctor and her staff who do exactly that for us. Last week's appointment certainly 'spooked' us both a bit, I'm not going to lie. Every time Brandon takes a dose, I know he's thinking about that shot of epinephrine and hoping he doesn't have to go through that again. As am I. 💗 We will never proceed if we feel this is unsafe, and we do not feel unsafe at this point, so we will proceed. Brandon told me that night (after he had calmed down from the epinephrine shot) that the events of that day made him want to press on even more. That's my boy - do everything the best he can and never halfway. He's full throttle in everything he does. Everything. So I'm not the least bit surprised that this is no exception. It also taught him to trust epinephrine . . . . he saw how quickly his symptoms subsided, and he now knows that if he ever needs epinephrine, he can have it, and it works.
Onward we go. We're going to try for that 4.0 mL dose again next Tuesday the 26th. We'd appreciate prayers of coverage for him during that appointment, so that his body can handle the dose without the need for epinephrine again, and that his moldable heart would be strong and brave to face it again. We thank you for that!
Until next time . . .
~Momma Knows Best
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