So you may be wondering what that “OIT” means in the title of this post. It stands for “Oral Immunotherapy” (also known as Desensitization). Its a clinical study program done on people with food allergies where they give the allergen to the person and then gradually increase the dose until they are able to tolerate a specific amount without having a reaction. Of course it’s all done with medical supervision in a controlled environment. That is to say…..the first dose. Then you are on your own for about two weeks. This may get a little lengthy, but it’s well worth the read if you are thinking about trying this. I’ll tell you our experience and try to give you as many facts as I can based on Our OIT Journey.
We came across this study by chance as we browsed the internet looking for any information we could about living with a food allergic/asthmatic child. The study was being done at at a hospital that we live two hours from. We started reading about it and looking into it and realized it was definitely something we were interested in.
This study is not a cure and in the end it’s not a complete change in lifestyle. However, it does give you peace of mind that perhaps they may be able to be around it or touch it without going into anaphylaxis. We called and got our name on the list so that when a spot became available, we would be ready. Well, that was when she was about two years old I think. We were contacted when she turned seven. However, there was a hiccup in why it took some time for us to get our phone call. The program had been moved to a different teaching hospital about fifteen minutes away. Luckily, this was the location of our Allergist and where she received all her allergy care. It just made our journey more convenient. We discussed this with our allergist first and she was certainly on board if this is what we wanted to do.
Once I got the call, I think I spent about an hour on the phone answering all sorts of questions about her health, her activities, our careers (jobs), and anything that could become a hindrance in attending this study. Now, let me explain the part about her activities. During this study, they will be feeding her the allergen (peanut in this case) that she is allergic to. I’ll give you a quick reference to the level she’s at. You are considered to have an allergy to something if your level reading (IgE labs) is >0.35. Nat’s level is over 100. You technically max out an 100. The numbers don’t go any higher than that. I guess they decided, if you get to 100, there’s just no point after that. So, getting back to the part about activities. She could not do any physical activities for at least two hours following the ingestion of the allergen. That would just increase her chances of having a reaction. Therefore, she had to make sacrifices to after school activities in order to take the peanut protein in a timely manner on a daily basis. As far as her health, her asthma was also an issue. She is on several asthma medications which she takes daily. One of these is Zyrtec. During the study, she would need to stop the Zyrtec at least five days before her food challenge appointments and any skin testing that was being done. If she could not handle being off the Zyrtec for those five days, that would certainly be an issue to us attending the study. Also, our appointments would be every two weeks so we had to be certain we could work this around our work schedule’s.
From our experience, there are several different ways the study can be done. It depends on the child, their health, their allergen and level, and of course, tolerance. Nat’s study was done with a peanut powder protein (we mixed it in applesauce)
in which the dosage was increased every two weeks. They started us out on a certain dose (6mg – she reacted to that and the beginning dose was lowered to 3 mg), monitored her for a couple hours, then sent us home with enough for her to take daily for two weeks. We did this for about one year. They were hoping that this study would be able to get her to the point where she would be able to eat four or maybe five peanuts a day. See, this is not so they can cure the allergy altogether, it’s only so they can eat enough to maintain a tolerance where they can be around it (the allergen) and not have that deathly allergic reaction. They may still have a reaction, but their body will be more adapt to get through it without pushing it to the limit of anaphylaxis.
Every two weeks on Tuesday, we ventured our two hour trip to the hospital to get her protein and be monitored for two hours. Always taking what we could to occupy our time during our two hour monitoring period because you never knew if that hours would turn into three…or four…or six. We had tablet’s, computer’s, books, cards,…oh….and Snoopy. Snoopy…….What a Trooper!
(Oh the stories I could tell about Snoopy). The staff there were very prepared though with their own arsenal of entertainment to occupy a room full of agitated children. They had movies, coloring books, cards, Lego’s, paint, and even on occasion….a craft making session in which Nat left with a couple of new hair bands. So it’s not like you are on your own in that category.
(Picture left above looks worse than it really was. They had to coax the blood from her body for testing with heated saline packs strapped to her limbs. As her daddy has always said, she’s an over achiever at everything!) Let me reiterate, I can’t say enough about the staff we had. They were exceptional!! And I’m sure this must be the consensus at most OIT study’s since these medical professionals already know that we as parents of these allergic children are already experiencing (as I like to call it) our own version of “Pre Traumatic Stress Disorder”.
Once we came to the end of this journey, She was taking up to 1400 mg of peanut protein. That’s an equivalent to about 4 1/2 peanuts. She was then taken off the protein for two weeks for her body to adjust without having it. Food challenges are done at the end of the study to accurately measure how much of the allergen they have adjusted to and can maintain without a reaction. Three challenges were suppose to be done (two weeks apart) but we ended up with a pretty decent reaction during the second challenge. Therefore, we were told that she could only tolerate one peanut a day as opposed to the three or four they wanted her to be on. So in finishing up and returning home, she would be eating one peanut a day. However, we were told that if we wanted to, we could eventually try and get her up to two peanuts a day but that was definitely her limit. So we did. We began feeding her 1 1/4 a day and gradually increased that over a period of about three months to which we now have her eating two peanuts a day.
We still follow the two hour monitoring period and make sure she’s not doing anything strenuous following her dose and she does quite well. Yes,…I said dose. That’s how we view it and that’s what we have taught her. It’s part of her medication routine now and will need to be for the rest of her life to maintain that level of resistance.
These study’s are not for weak. Purposely putting your child into a reaction can be quite tough to take. It’s hard to watch and sometimes you feel like “Why are we doing this to her”, but we thought about the end result and knowing that it may mean the difference between life and death in certain situations was…well…”Quite worth the effort!” On a positive note, you can quit the program at any time you feel you can’t do it or something becomes a hindrance.
So this was our OIT Journey. Would we do it again….Absolutely!
Please feel free to comment or contact me if you have any questions at all.