One week and counting . . . . .
We are officially one week away from the start of OIT (oral immunotherapy.) Next Tuesday, the 22nd, we will spend approximately 6 hours in Brandon's doctor's office, along with 4 or 5 other kids, all on "Day 1" of OIT. Our doctor essentially shuts down her office for Day 1 of OIT once per month, and that's all she focuses on that day. That's a comfort to this mom, knowing that their attention will be focused solely on these kids, and that there are other families starting this journey with us. We may all be starting with different foods, but we're all taking the first big step down a road that fills us all with hope 😊, expectation 🙏, and a bit of trepidation 😐. Brandon and I will pack food to snack on all day (they encourage snacking when taking the doses, so that the stomach isn't completely empty), our lunches, games, Kindles, books, playing cards . . . . whatever we feel like doing for the approximately 6 or so hours that we will be at the office. It's going to be a long day, but if all goes well, it will also hopefully be completely uneventful. 😁
So what does it take to get started with OIT? I'm sure each doctor does things a bit differently, but this it what our experience has been like. The whole thing has happened relatively quickly, to be honest. The doors just keep opening for us, and we haven't had any huge hurdles yet, so we consider ourselves abundantly blessed in that regard.
We started with an initial consultation as a new patient, honestly not fully knowing the road this would take us down. We got this doctor's name from Michael's (my husband) cousin who lives a bit north of us . . . . her son had a peanut allergy, and after his testing with this same doctor, she determined he was a candidate for a food challenge (testing to see if the body can withstand a known allergen.) He passed his with flying colors and can now eat peanut butter as much as he wants 🥜 so we decided to make an appointment with her as well. As I mentioned in a previous entry, we haven't really been tied to any particular allergist in the past 4-5 years, as the needs we have as a food allergy family (yearly medication refills) were being met by Brandon's pediatrician. At that first visit, after looking at his previous blood work and skin testing, she said that if we wanted to pursue OIT, we'd need to do some updated blood work, likely followed up with skin testing, to determine the best path forward for him. To be honest, Brandon and I were both a bit surprised at that first appointment! Doctors who do OIT are still a bit hard to find, and here we were, presented with this option as if it were just the next logical step in his treatment. "No muss, no fuss, let's just pursue OIT," was the impression we left with.
Well, okay. 😊
We decided to keep going down the path of pre-treatment evaluations, all at Brandon's direction. We have left the decision to proceed or stop at any point in this journey completely on his shoulders. It's a lot for an 11 year old to think about and weigh, so of course we have been here to answer questions, talk about it, and discuss our options. (In the back ground, I have been furiously researching as well! 😉) But ultimately, he's the one who has the allergy, and he's the one who has to decide if going forward feels right to him, so we have left him in charge of the go/no go decision. So far, he keeps giving us the 👍, and so we proceed.
The first step was a blood draw. I don't know many kids who willingly consent to needle sticks, and Brandon was no exception. The last time we had blood work done for him several years ago, the lab messed up on the peanut numbers, and we were left with no information on that piece, which was highly disappointing. So going into this blood draw, he was already a bit nervous, while remembering the flub of the previous lab. The lab we went to this time was great, the phlebotomist was super gentle with him, and he was done before he even knew it.
I met with his doctor about a week after the blood work, and we talked through everything. All I have to say is that the human body is **fascinating.** One of the things that blood work for food allergies measures something called IgE, which stands for immunoglobulin E. It's the medical term for antibodies that are produced by your immune system when it encounters an allergen (be it food, airborne, or other.) To no surprise, his were high on peanuts, cashews, pistachios, and sesame. He was moderate on almonds, brazil nuts, pecans, chestnuts, hazelnuts, and walnuts. Not only that, but his overall IgE number was also high. That was the fascinating part to me . . . . that even if she hadn't tested for individual foods, we could tell from his overall IgE numbers that he is an 'allergic kid.'
The blood work results led her to want to do skin testing on Brandon to confirm a few things, and also to determine if he can do food challenges on certain foods (which is a MUCH quicker process), or if he needed to do full-blown OIT. Brandon has had skin testing done two other times in his life. It's not a bad process overall, but for a kid, it's pretty daunting . . . . "Here, let me take you to a doctor who is going to essentially scratch your skin with about 80 different allergens, let's see how big the welts get on your skin, and oh by the way, you can't touch them when they itch like crazy." Yeah, that's a fun message to deliver. 😑 But again, I'll say that Brandon rose to the occasion, and even though he didn't want to, he said he'd move forward with the skin testing, knowing it was the next step towards pursing this freedom for him.
We did the skin testing about a week later, and the anxiety leading up to it ended up being worse than the procedure itself. 😉 The nurse who administered the testing was super gracious with Brandon, helping calm him down and reassure him. Once she had applied everything to his arms (we did arms this time, instead of back, which is what we had done in the past), Brandon immediately relaxed a bit. Then he honestly just enjoyed watching his arms morph and change in front of him . . . . like a super-hero power! 💪 Below are a few pics of his skin testing results. If mosquito bites bother you, don't look!! 🙈
So what does it take to get started with OIT? I'm sure each doctor does things a bit differently, but this it what our experience has been like. The whole thing has happened relatively quickly, to be honest. The doors just keep opening for us, and we haven't had any huge hurdles yet, so we consider ourselves abundantly blessed in that regard.
We started with an initial consultation as a new patient, honestly not fully knowing the road this would take us down. We got this doctor's name from Michael's (my husband) cousin who lives a bit north of us . . . . her son had a peanut allergy, and after his testing with this same doctor, she determined he was a candidate for a food challenge (testing to see if the body can withstand a known allergen.) He passed his with flying colors and can now eat peanut butter as much as he wants 🥜 so we decided to make an appointment with her as well. As I mentioned in a previous entry, we haven't really been tied to any particular allergist in the past 4-5 years, as the needs we have as a food allergy family (yearly medication refills) were being met by Brandon's pediatrician. At that first visit, after looking at his previous blood work and skin testing, she said that if we wanted to pursue OIT, we'd need to do some updated blood work, likely followed up with skin testing, to determine the best path forward for him. To be honest, Brandon and I were both a bit surprised at that first appointment! Doctors who do OIT are still a bit hard to find, and here we were, presented with this option as if it were just the next logical step in his treatment. "No muss, no fuss, let's just pursue OIT," was the impression we left with.
Well, okay. 😊
We decided to keep going down the path of pre-treatment evaluations, all at Brandon's direction. We have left the decision to proceed or stop at any point in this journey completely on his shoulders. It's a lot for an 11 year old to think about and weigh, so of course we have been here to answer questions, talk about it, and discuss our options. (In the back ground, I have been furiously researching as well! 😉) But ultimately, he's the one who has the allergy, and he's the one who has to decide if going forward feels right to him, so we have left him in charge of the go/no go decision. So far, he keeps giving us the 👍, and so we proceed.
The first step was a blood draw. I don't know many kids who willingly consent to needle sticks, and Brandon was no exception. The last time we had blood work done for him several years ago, the lab messed up on the peanut numbers, and we were left with no information on that piece, which was highly disappointing. So going into this blood draw, he was already a bit nervous, while remembering the flub of the previous lab. The lab we went to this time was great, the phlebotomist was super gentle with him, and he was done before he even knew it.
(Two thumbs up after a successful blood draw, with the cool purple arm wrap to prove it. 😉)
The blood work results led her to want to do skin testing on Brandon to confirm a few things, and also to determine if he can do food challenges on certain foods (which is a MUCH quicker process), or if he needed to do full-blown OIT. Brandon has had skin testing done two other times in his life. It's not a bad process overall, but for a kid, it's pretty daunting . . . . "Here, let me take you to a doctor who is going to essentially scratch your skin with about 80 different allergens, let's see how big the welts get on your skin, and oh by the way, you can't touch them when they itch like crazy." Yeah, that's a fun message to deliver. 😑 But again, I'll say that Brandon rose to the occasion, and even though he didn't want to, he said he'd move forward with the skin testing, knowing it was the next step towards pursing this freedom for him.
We did the skin testing about a week later, and the anxiety leading up to it ended up being worse than the procedure itself. 😉 The nurse who administered the testing was super gracious with Brandon, helping calm him down and reassure him. Once she had applied everything to his arms (we did arms this time, instead of back, which is what we had done in the past), Brandon immediately relaxed a bit. Then he honestly just enjoyed watching his arms morph and change in front of him . . . . like a super-hero power! 💪 Below are a few pics of his skin testing results. If mosquito bites bother you, don't look!! 🙈
9 panels of tests, 8 allergens on each panel. Now we wait.
The bump below the letter "A" is the control - it shows that the test is working and that his body isn't blocking any reactions to any allergens.
The welt below his elbow crease confirmed he's still allergic to cats. 🐈 Meow.
And here's the kicker. Yep, all of that below the "N" is the nut panel. Don't you just want to scratch your arm looking at that?!?!? 😖
Some good news that we got from the testing, too, is that he's allergic to less things overall than he was at his previous skin testing, back in 2010. 🙌 That's definitely welcomed news for us!
And last but not least, the coveted ice pack on the arm, soothing and cooling off those itchy bumps. The nurse applied Benadryl gel first, then she added the ice pack. Within about 30 minutes, the bumps were primarily gone. As an aside, he wanted them to stick around just a little bit until the next day, as he wanted to 'show them off' at school to all his friends. I mean gosh, what 11 year old boy **doesn't** like to share 'battle wounds' with his friends? 😉
So there you have it - from our first appointment on 3/16, up until today, 5/15. In just shy of 60 days, the prospect of a life without food allergies for Brandon has rapidly progressed for us.
Between talking with other food allergy moms, watching OIT Facebook groups, and through an upcoming meeting with nearby mom and her daughter who have successfully traveled the OIT road (with a doctor in a different city), we are doing all we can to prepare ourselves for this journey. Prayer will always be our number one source of strength and guidance as we progress, and we are thankful for the people God has put in our path along the way to help us. He's ultimately the one in control. If this is meant to work for Brandon, it will. And if it doesn't work for him, then for some reason, it wasn't meant to be. But we press onward . . . . hopeful, expectant, and excited.
Until a report back after OIT Day 1 . . . .
~Momma Knows Best
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