Saturday, November 3, 2012
A few OIT Corrections
Thanks to a woman very knowledgeable in the OIT process, it has been brought to my attention that a few details in my original post about our journey to OIT need to be correct or at least better explained. Hey, I warned you that I am new at this and don't have all the facts 100% right. I do my best to read up on as much as I can, but interpreting it and finding the time to do extended research while taking care of the monkeys is sometimes difficult. Anyway, on to the corrections! First, I should have been a bit more clear. The death I spoke of was not actually OIT, but an injection study. I knew this and even told me husband about it, so I'm not sure how I got the information all mixed up on the blog post. It was a clinical study where the patient was supposed to receive a placebo injection, but was accidentally administered the non placebo injection. You can see how that would be terrible. The injections were stopped for all after that. No one has died from OIT itself. Sorry for that mistake on my part - not a minor fact to make a boo boo on there. Second, I described one protocol for OIT. From my research it appears that this will be the closest to the protocol that WE would be following should we choose do start OIT with Big Monkey. Different doctors and different studies do different things. Straight from my friend's message to me: "Some use liquid with peanut extract or protein? Others use peanut flour and applesauce (DUKE STUDY PROTOCOL). Some dose once a day (DUKE) others twice a day. Some take over a year to reach maintenance. Some take 4-6 months." So my description is by far not the only way OIT is completed, but since this is our journey, I have decided to focus mostly on what we will be facing. Lastly, and something I didn't really know, reactions to treatment/side effects are not actually that common. I guess my bias comes from hearing mostly from families that are having reactions. That makes sense though. Those struggling the most with something are often the most verbal because they need more support to keep trucking forward. Those who breeze through a new journey with no struggles can often handle the journey on their own. Those that do have side effects usually have them at the earlier doses, which agrees with the study I read. I can't recall the exact percentage numbers for the risk of side effects done in the study, but it was less than 50% for most things. So we have a very good chance of not having side effects at all. It all depends on the person. So those are just a few corrections and I'm sure that more will come up in the future. Of course, most of what I post from here on out will be our own personal experiences rather than an overview, so maybe not. :) Unless I decide to try and explain the uKnow Peanut component test. I've been leaning toward not explaining in detail though and instead just linking interested individuals to the website. This may be a much easier way to avoid sounding like I don't actually know what I'm talking about. It's all good though as we all have to start somewhere in the learning process and have to learn from someone. Thank you to some amazing people for helping educate me in the topics of food allergy, testing, and OIT! We would not have this much hope of a more normal and stress free life without you. Unfortunately, I have to report that Baby Monkey seems to have had his first food related allergic reaction two nights ago. It was not a good night. He had a mild rash reaction to a food I have not yet identified (we had cashews that night, so I am praying as hard as I can that it was not to the cashews or we will next have to go tree nut free, which would not be easy for this household). That same night I found half a peanut in the dishwasher that had hitched a ride in Daddy Monkeys lunch box. As you can imagine, my anxiety that night and the next day was a little high. Here's to hoping Baby Monkey's rash was a fluke and that I won't be telling you all about a new challenge in our life. We need some simplicity.