Monday, November 26, 2018

OIT Update

Last Tuesday Ruthie and I headed to North Carolina for an OIT updose. This updose was exciting because we are now officially through half of the doses! So since this was a bit of milestone in her OIT journey I thought I'd do an update!
Halfway there! We did 10 doses the first day and when we go back in a month we will be on yellow 2 (blue 6 and yellow 1 are the same dose so we go a month between updoses instead of the normal 2 weeks).

We've gotten into a good routine where on her updose days we drop the big girls at school and head to NC. The drive takes about 2 hours (depending on Charlotte traffic) and Ruthie rocks the drive. I pack her a little bag of things to do and a bag of snacks and she's a pretty happy rider! Once we arrive in Salisbury we have an hour in the office where she gets her dose and then they watch her for a reaction. They have a special room for OIT patients that has coloring, toys, video games and a TV with Netflix. Ruthie usually wants to watch TV because she can pick what she wants to watch without any input from her siblings! Then we grab lunch and drive the 2 hours back and we're back in time for me to pick the big girls up from school. And JP lucks out and gets undivided attention from one of the grandmothers while we're gone!
Ruthie gets to pick where we get lunch after updoses and she almost always picks CFA so she can get ice cream!

Our OIT journey has been going great and the daily dosing has been so much easier than I thought it would be. Ruthie takes her dose every morning after breakfast and then has a 2 hour rest period where she can't get overheated or have an elevated heart rate. Other than that she can do whatever she wants. So we can run errands and she can play in the house (just no running or wresting with JP). I actually drop her off at school each day with about 15 minutes left in her rest period.  And actually, during the week, she spends a big chunk of her rest period in the car while we take the big girls to school.
One thing that has really helped in this whole process is that Ruthie is VERY excited about the process. She has a lot of anxiety about her allergy and we are SO ready to not have to worry about reading labels and being concerned when we eat out about if her food has touched something with peanuts. The big girls got Marble Slab coupons with their report cards but Ruthie can't go to Marble Slab because of cross contamination. Ruthie told the girls that they would just have to go when she wasn't around but was thrilled when I told her that once we finished OIT we could ALL go! She also has a few pieces of candy that she has set aside to eat once she finishes OIT. Also, I recently printed out the schedule at the top of the post and put it on the bulletin board and she loves being able to see where in the process she is!
Our doctor has been PHENOMENIAL. We have his cell phone number and anytime we have a question or a concern we simply text him. He is always so quick to respond. Even the time I got home from work and Ruthie was wheezing so I had to text him at 9pm on a Saturday night while he was on vacation with his family. He got right back to me and we came up with a treatment plan and he had me check in with him the next morning to make a decision about dosing that day. I have been blown away by our doctor's commitment to his patients and to the success of the treatment. His dedication is evident in the big things like availability but also in little things such as when we go for an updose HE gives her the dose and HE checks on her after the first 30 minutes and HE checks her before we leave the office. He could easily pass off any of those steps to an assistant in the's not like he's far away, it's a pretty small office and he's the only doctor. But he takes the time to look at her and talk to her and make sure that everything is ok. We could have gone to a doctor a little closer to us but I had heard some things from other parents that made me a little nervous about the doctor and I am SO glad we chose to drive a little further and go to our doctor.
So that brings me to where we are now. We started out with a liquid with a very low concentration of peanut powder mixed in it. Then we moved to a much more concentrated liquid. This week we moved to capsules of peanut powder that we open up and mix in applesauce. The next change in dosage form is a change to an actual PEANUT! We will gradually increase the amount of peanut powder over the next 2 1/2 months so sometime mid February, if we don't have any bumps in the road, Ruthie will have her first peanut! The idea of that is very exciting and VERY scary. We've spent every day since she was 15mo old protecting her from peanuts and the thought of giving her one to eat is a little terrifying. It's easier with the liquid and the powder because they don't look like a peanut.
Our last updose...peanut powder mixed with applesauce.
Making the decision to start OIT was absolutely terrifying but it has been an absolutely wonderful decision for our family. I am so thankful for all the support we have gotten from friends and family and from our local doctors. Many, many people have been blasted by their non-OIT allergist for even wanting to discuss OIT but our allergist was wonderful and encouraged us to investigate all our options. We would have done OIT no matter how our allergist felt about it but it is so nice to have the support of him and our pediatrician! I am so thankful that we are able to make the trip during the time that the big girls are in school so there is absolutely no disruption to their normal routine. Ruthie loves the alone time with me and JP loves his alone time with whichever grandparent has come to keep him that day.

1 comment:

  1. Fellow allergy mama here! Another modality that may accelerate her healing is BIE (bioenergetic intolerance elimination)— I’ve seen it heal multiple of my kids’ allergies, as well as allergies in my sister & nieces, and it’s even helped correct mental imbalances in my friend’s preteen (neurotransmitters that were leading to severe depression). Anyway, it’s non-invasive and has no risks as far as I know. It’s also not very pricey. We have a practitioner in Anderson SC we drive to see, another option is a practitioner in Rock Hill (Charlotte NC area).