Today we started peanut OIT with Ruthie. Oral immunotherapy, in a nutshell (pun intended), is like allergy shots but for food allergies. And instead of getting a shot you take a small amount of your allergen by mouth.
Nobody in Columbia offers OIT so we are going to an allergist, Dr. Williams, in North Carolina. His office is about 2 hours from our house and it's straight up the interstate so it's not a bad drive at all.
So how does OIT work? Different allergists have different protocols. To get to our "graduation" goal I think there are 31 dose increases. On the first day you dose every 15 min until you get to dose #10 or have a reaction. Each dose is repeated once. After that you go home taking your last dose once a day every day for 2 weeks with a mandatory 2 hour rest period after each dose. After 2 weeks you go back to the office and they go up one dose and they watch you for a little bit to make sure you don't react and then, as long as you don't react, you go home on that dose every day for 2 weeks. That one updose every 2 weeks cycle is repeated until you reach the end! The end goal is 12 peanuts. After 2 weeks of that you are challenged with 24 peanuts and you officially "graduate" if you pass 24 peanuts!
What does graduation mean? Graduation means that you move on to the maintenance phase. Graduation means that you can "freely" eat peanuts. I put it in quotation marks because if you do eat peanuts you still have to observe the 2 hour rest period afterwards. Graduation means that you still take a dose of peanuts every day, observing a 2hour rest period afterwards. Ruthie will take this dose of peanuts (our doctor does 8 peanuts) every day for the rest of her life. This is because OIT does not "cure" a food allergy but it desensitizes the patient. So in order for the body to remain desensitized you have to ingest your allergen daily. There are patients who after years of maintenance have been able to only dose a few times a week and take a lower daily dose.
Who can do OIT? Anyone! I've heard stories of people in their 60s successfully completing OIT and I know of people who start it with children as young as 1. They are finding that generally younger kids do really well. How young a doctor will start depends on the doctor's comfort level. Dr. Williams won't start a child until they are 3 years old. Also, they do OIT for LOTS of food allergies! I know Dr. Williams does peanut and I think milk and tree nut as well and I'm not sure about any other allergens. Most doctors start with peanut (because the most research has been done with peanut OIT) and then add on other allergens from there. I've heard of people who have done OIT for eggs also and even shellfish! You can also do OIT for multiple allergens! Some doctors will do 2 allergens together and some will only do them one at a time. Some people have really high blood levels and some have really low blood levels...success does not seem to be dependent on your starting labs.
Why OIT? So why did we choose OIT? Why not just avoid peanuts forever? Because it's not that simple. Peanuts are hidden in lots of things (how many of you reading this know that Lance uses peanut flour in ALL of their sandwich crackers so even the cheese crackers have peanut in them?). Ruthie has a contact allergy so if she touches peanut she will break out in hives. Because for over a year she has introduced herself to people by saying "my name is Ruthie and I'm allergic to peanuts". Because not everyone is going to look out for our child with the vigilance that we do. Because we want to have a Halloween where Ruthie doesn't say "trick or treat" and then immediately say "does your candy have peanuts in it because I'm allergic". Because I already have anxiety about her going to kindergarten with a peanut allergy and trusting a teacher with 20 other kids to watch to catch that Ruthie is having a reaction and get her epi in her before it's too late. Because we want to be able to ENJOY a football game or baseball game with Ruthie instead of constantly worrying about if the people around us are eating boiled peanuts. Because I dropped her off for the first day of zoo camp this year, where everyone brings their own snack and their are no allergen restrictions, and thought I was going to throw up because I was so nervous. Because our 4 1/2 year old already has anxiety about her peanut allergy and about having a reaction...and that's with her unable to remember having a reaction as her last one was at 14months.
So how did today go? It was GREAT! We went up to NC last night and stayed with Paul's cousin Mark and his wife Kelly. They are so nice to let us come spend the night (we also stayed there last year when we had our consult) and Kelly made Ruthie cinnamon rolls this morning which absolutely thrilled Ruthie! This morning we headed to the doctor's office and yes Paul and I were SO nervous. For 3 1/2 years we have been hypervigilant about avoiding peanuts and now we're allowing a doctor to give her small amounts of peanut.
When we arrived at the office they called us right back. They have a special room for OIT patients which has a TV, video games, playdoh, games, coloring stuff, etc. The doctor came in and meet with us and explained how the day would go and answered our questions. Then he checked out Ruthie to make sure she didn't have any rashes, wheezing, etc. and then we were set to go! The doctor came in the room with the nurse for the first dose and then after that he popped in a few times throughout the day to check on us. The nurse came in every 15 minutes with a new dose (right now her dose is carefully measured peanut flour mixed with Kool-Aid). She was super punctual so I'm pretty sure that today her job was just to take care of Ruthie! Dr. Williams also explained that he stays in the building the whole time we are there and they schedule fewer patients on days when someone is starting OIT. Every time I'm around Dr. Williams I am so impressed with how much he cares about his patients and how dedicated he is to OIT. The nurse that came in and gave Ruthie her dose was always so relaxed and calm and that definitely helped me not feel so nervous!
Ruthie made it all the way through dose 10 with no reaction. We were so thrilled! This means we have 21 updoses left! This means that sometime in February Ruthie will eat her first peanut and in around a year we will be in maintenance. Now of course this is if everything goes smoothly with no reactions. We're taking this one day at a time, one updose at a time. Generally if you have a reaction they go back one step for about 2 weeks and then try to updose again.
We left the office after about 5 1/2 hours and headed back to Columbia. Ruthie was worn out by the time we left!
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| Ready to start! |
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| She got lots of Daddy snuggle time! |
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| They gave us a paper to track her doses. Perfect for my Type A self! |
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| Headed home! |
What do I want to remember from today? I want to remember a conversation I had with Ruthie. She complained at one point that she was having to take a lot of "medicine" today. I reminded her because we were doing this so hopefully next year at Halloween she wouldn't have to worry about what candy she was getting and that hopefully sometime next year we could go eat at an ice cream store. Her little eyes lit up and she said "so I won't have to worry about people touching me anymore?". It made me tear up that, for my 4 year old, even more than ice cream stores and Reece's cups (granted she's never eaten a Reece's cup or been to an ice cream store like Marble Slab) the most exciting thing about this process is not having to worry about someone touching her after they have eaten. She is excited about being able to sit down to eat in a public place and not having to worry about what the other kids are eating. This is why we have chosen OIT.
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