Oral Immunotherapy – The First Appointment
Oral Immunotherapy – The Second Appointment
For those who are still following along, you know that we are still in the early stages of our oral immunotherapy treatment. So far we have not seen any reactions to the foods we’ve been assigned (pine nuts and chickpeas). We are still in the “prepping” stages to get her body strong and “ready for battle”. However, I know I will get increasingly nervous as we move into her more serious allergens.
After our second “two day” appointment, we were left with a detailed plan of care. Going forward, this was what was expected from us at home:
- Daily dosing of allergy medications – 5 mg of Xyzal, and Flonase.
- Eat 3-5x per week – 1 apple, 1 pear, 1 stone fruit, 1/2 tsp wheat germ, and 1/4 tsp tahini sauce.
- Daily maintenance food – pine nuts (2o) << this will change with each appointment
- Daily treatment food – none yet << this will be added in subsequent appointments, but we’re not there yet.
This is a breakdown of Lil’ Miss Louboutin’s plan as we move forward:
- Pine nut challenge (6 g) – in-office – done
- Visit 1 – Chickpea challenge – in-office – done (and we’ve been continuing to dose both pine nuts and chickpeas daily at home until our next in office challenge, which is coming up soon)
- Visit 2 – Brazil nut challenge
- Visit 3 – Dosing for Almonds
- Visit 4 – Dosing for Hazelnut
- Visit 5 – Dosing for Soy
- Visit 6 – Dosing for Coconut
- Visit 7 – Dosing for Pecan
- Visit 8 – Dosing for Walnut
- Visit 9 – Dosing for Macadamia
- Visit 10 – Dosing for Pistachio
- Visit 11 – Dosing for Cashew
- Visit 12 – Dosing for Peanut (80 mg)
- Visit 13 – Dosing for Peanut (400 mg)
- Visit 14 – Dosing for Peanut (2 g)
- Visit 15 – Dosing for Peanut (10 g)
As for logistics, we make sure to give her the maintenance foods (right now she has to eat 20 pine nuts and 12 chickpeas) first thing in the morning with breakfast because once they introduce treatment foods (we haven’t been assigned any yet), they require you to dose treatment foods in the afternoon. There also needs to be a 4 hour window between maintenance and treatment foods.
As for the foods she has to eat 3-5x a week, we usually give half a piece of fruit at breakfast (we don’t have that much time in the morning and half is about all we can get in), half with her school lunch, and the rest of the fruits when she comes back from school. Then after dinner, we’ll give her the tahini and wheat germ. All we do with these is get a spoonful of jam and mix in the tahini and wheat germ. The sweetness of the jam helps mask the taste and texture of tahini and wheatgerm.
We explored different ways to give her these foods before settling on this approach. At first we were mixing all of it in a smoothie, but it was a lot of smoothie to drink all at once, and it took her upwards of an hour to drink it. We also tried to mix the wheat germ and tahini in oatmeal, or in a sandwich with jam (like a mock PBJ), but she wasn’t a fan of any of those approaches. As for the medications, those are usually given to her right before bed. We’re glad we finally found a system that works for us, even though it required some trial and error.
Some questions people have asked that I will answer here:
- Is there a minimum age requirement to enroll in the program? I asked Dr. Randhawa, and his response was that it really depends on the child’s ability to communicate and eat, which makes sense. I’m sure younger toddler-aged children can go through this, but it would pose some challenges with getting them to eat the necessary foods, and it would be a concern if they can’t communicate well that they are feeling symptoms like itchiness, tummy aches, and such. Plus some of the longer office visits can make it hard too.
- Were Lil’ Miss Louboutin’s results what you expected based on your prior knowledge? Honestly, no. We knew she was allergic to peanuts because of an actual reaction, confirmed through bloodwork. The blood panel we had done in the past also indicated that she had a slight walnut allergy, but it did not test for every single nut. Because of her peanut allergy, we had always just avoided ALL nuts. So we knew about her peanut and walnut allergies, but did not know about pistachio and cashew, and that she was even more allergic to those than walnuts.
- Can she do OIT for more than one allergen at a time? As you can see in the dosing schedule above, she is only doing one allergen at a time. However, in a sense they are tackling more than “one allergen” at a time because they are looking for the common denominator and protein profiles between allergens. So she is already indirectly building immunity to peanuts as she goes through this dosing schedule because it shares similar proteins with some of the other foods.
- How long will she be in the program for? There are 15 challenge visits plus the first few intake visits, so it’s going to take us roughly 20 months if everything goes smoothly and she passes all in-office challenges as expected.
What do you think about this whole process so far? Any other questions?
wonderful kiwi / 23653 posts
This is all so fascinating! And makes SO much sense too. I so wish this is a more widespread/readily available program so more kids can be helped!
And also wanted to say this must be SO much work on your end so I commend you keeping up with it all!
wonderful pomelo / 30692 posts
Thank you so much for sharing all these details! The idea that it might only take two years to desensitize her is AMAZING! Fingers crossed that everything goes well!!!
grapefruit / 4278 posts
I don’t have kids with allergies, but this is super interesting. Thanks for sharing!
pear / 1648 posts
This is so interesting to hear about! Thanks for incorporating other questions as well.
guest
That is so many allergies at once! Wow! The dr we saw wasn’t prepared to do that many allergies at the same time.
What time of day does your child take the maintenance dose? and are there any restrictions around the dosing like being still?
coffee bean / 35 posts
Thanks for sharing all these details! I just found out my younger son is allergic to egg whites and peanuts so I’m definitely prepping myself for him needing immunotherapy when he’s older.
Can you explain the rationale behind eating apples, pears, and and stone fruits every week? Are those foods she is sensitive to?
guest
It’s amazing how different experiences can be from doctor to doctor! We don’t have any additional food rules aside from eating a well rounded diet. Our doctor did have some concerns regarding the issue of dosing impacting hunger and diet, but just said we’d discuss if/when that happened (it hasn’t). Commenting on your past post, the costs were also very different for us. For anyone considering doing OIT, we have found that the OIT 101 group on Facebook is immensely helpful.
In terms of dosing, we’ve had great luck with apple sauce as a mixer. We pre-mix about a week’s worth of dosing and store it in these jello shot plastic cups with lids from Amazon. We’ve been dosing for 6+ months (and are up to 10 grams) and it’s been an amazing experience.
kiwi / 549 posts
That is a lot of food to eat…my 2.5 y/o Dd isan extremely picky eater. Now I wonder if we should begin the process once we are off the waitlist and called for an appointment or if we should wait until she’s a bit older. We are currently #125. I was hopeful that I get her allergy free by Kinder but hearing how much food she needs to consume daily, I don’t know if we will be able to get her to eat all that at her current age…
blogger / eggplant / 11551 posts
@iluvboba637: It is a lot of food, but would she be open to eating purees or smoothies for the fruits, and things like muffins, pancakes, and cookies for the nut and grain type foods?
They have a FB group that might be helpful for you – Southern California Food Allergy Institute’s Kitchen Table. Lots of people asking questions about what to feed their kids and how to get them to eat, etc.
blogger / eggplant / 11551 posts
@emileee: Dr. Randhawa said that 80% of plants share 25% of the protein classes, so these foods contain proteins that also help the body build immunity against food allergens.
blogger / eggplant / 11551 posts
@C: She takes the maintenance dose in the morning, at breakfast time. There needs to be a minimum of a 4 hour window between the maintenance foods and the treatment foods. Maintenance foods are foods that she has passed in the office, and there are no restrictions besides the 4 hour window requirement. Treatment foods are newly introduced foods. Those are the foods that have restrictions, like she cannot exercise or take a hot shower for 1 hour after eating treatment foods.
blogger / eggplant / 11551 posts
@snowjewelz: Me too! Thank you! We just went in for another office appointment today, and we’re adding onto the already existing foods. It feels overwhelming at times, but it will be worth it in the end! Also, we found out DS’s results today too and will be starting him too. That will be for another post!
blogger / eggplant / 11551 posts
@Adira: Thank you for all the support and encouragement!!
wonderful pomelo / 30692 posts
@Mrs. High Heels: I’m encouraged reading your story! My youngest is allergic to peanuts, tree nuts, and sesame (and who knows what else), so I’m LIVING for your OIT journey! We don’t have anywhere close by that does OIT, but maybe someday!!
guest
Hi Mrs. High Heels, I know that this is an old post, but I was hoping that you could please post an update with how everything went for your kids. My son is allergic to milk and I’m considering TIP at SoCal Food Allergy Institute.