Oral Immunotherapy

So excited to meet with Dr. Williams!

This week we went to Salisbury, NC to meet with an OIT allergist for Ruthie and so I thought I'd share a bit about our experience and our plan moving forward.

For those of you who don't know (which is probably most of you!) Oral Immunotherapy (OIT) is a treatment where you are desensitized to your allergen. The exact method varies from office to office but in general the "active" phase lasts 6 months to a year. The first day of treatment you are updosed throughout the day until you reach the goal for the day or have a reaction. You then go home on a dose you can tolerate and take it for 1-2 weeks, 1-2 times a day (protocol varies by office). After you take your dose you have to "rest" (no exercise/play that will increase your heart rate and nothing that will make you hot) for 2 hours. 1-2 weeks later you return to the office and are updosed. In general this is a quick appointment. Go in, get the dose, you're watched for a short amount of time and you're sent home with your new dose. You continue to be updosed until you hit the goal which is usually to be able to freely eat your allergen! Once you've hit your goal you enter into the "maintenance" phase. The maintenance phase lasts indefinitely (theoretically for the rest of your life but as all this is so new that who knows what the future holds!). During the maintenance phase you eat your prescribed dose of allergen every day.

So, where does our family fit into this? Ruthie has a peanut allergy. She was diagnosed at around 15 months. She has not been exposed to peanuts since we discovered she was allergic. We are so fortunate that she never had an anaphylactic reaction before she was diagnosed. We were able to control her reactions (hives, facial swelling) with Benadryl and Zyrtec. We live in fear of her accidentally ingesting a peanut and having an anaphylactic reaction.

The fear that an allergy parent deals with can be crippling. It is a fear that no one can truly understand unless they have been there. It's the fear that sometimes makes it hard to take a deep breath. I don't remember where or when I first heard about OIT but to me it was a ray of hope. Hope that one day we might not have to live in constant fear.

So how did we get to this point? Over the last year or so I have done lots of research. I found an awesome FB group (OIT 101) that has TONS of information on OIT along with a list of private practice doctors who do OIT. (This is doctors who are not part of a study.) (Let me know if you want me to add you to the group...I think you get approved faster if you're added by a member.) When I first looked at the list the closest doctors to us were in Atlanta or Raleigh so we would have been looking at a 3-4 hour drive either way. Then after awhile a doctor appeared on the list and he was in Salisbury. Salisbury is only 2 hours away AND Paul has family in the area. I talked to our local allergist about OIT and was so pleased when he was supportive. Allergist seem to be either very pro OIT or very anti OIT. Our allergist did recommend that we wait until Ruthie was 5 so that she could better communicate a reaction. I felt very strongly that I wanted and NEEDED to have this done before she started kindergarten so I decided to go ahead and make an appointment to see Dr. Williams, knowing that after our consult we could wait to start OIT if we wanted to.

The Consult: This past Tuesday evening Ruthie and I headed to NC to spend the night with Paul's cousin Mark and his wife Kelly. They were so kind to let us crash at their house AND Kelly had pulled out her daughter's old Barbie stuff for Ruthie to play with so Ruthie thought this was all a great adventure. Then Kelly made us cinnimon rolls for breakfast. Ruthie was in love. (For the record, she has already asked when we can go back!)

Ruthie's new BFF, Kelly!

Wednesday morning at 9am we met with Dr. Aerik Williams. He was so fabulous! From the minute we walked in I was impressed with the office and the staff. They put us in a room full of entertainment for kids who will be in the office for an extended amount of time. There was an Xbox, playdoh, coloring books, etc. Then we met Dr. Williams and he was wonderful as well! He looked at all our labs, talked to me about her history and our family health history, went over his OIT protocol, answered all my questions and made a recommendation.

So what did we decide? We've decided to wait a little bit to start OIT and here's why. When Ruthie had blood drawn back in April her numbers had decreased (and they were pretty low to begin with). Our allergist was very hopeful that she was outgrowing her allergy. So we skin tested her again this summer. And it was the same as 2 years ago. I was disappointed and our allergist was disappointed. I told someone that he had seemed so hopeful and after that skin test result I just felt like all the hope had been sucked out of the room. So when Dr. Williams looked at her labs and skin test results he felt that she still has a better than average chance of outgrowing her allergy! Which would be awesome! So his recommendation was to wait until closer to 5. He said that if she still has the allergy at 5 she's most likely stuck with it. Because once you start OIT you never know if you've outgrown the allergy. I really, really liked though that he said this and then he said but YOU know your child and what's best for your family and if you tell me that you want to start OIT tomorrow that's what we'll do. I loved the fact that he was flexible and that he respected our opinion about Ruthie's treatment. So, with all that information and after discussing the pros and cons and what was important to us (such as doing this before elementary school...have I mentioned I'm TERRIFIED of her going to elementary school) we decided on a plan. We will redraw her labs in April or May of 2018 and then make a decision about treatment. If her numbers continue to drop (any drop would put her araH2 less than 1 and that's the only protein she's still reactive to) then we'll hold off on OIT but if they've stayed the same or gone up we'll start OIT. So that's the long answer to the question!

Dr. Williams did say he thought there was an allergist in Charlotte that was doing OIT. When I first started researching OIT I got the impression she was only doing SLIT (sublingual immunotherapy) and after doing some research decided that we didn't want to do that. He thinks she's doing OIT now though so we would probably explore that option before starting OIT since it's about an hour closer to home.

I think the thing that struck me the most about Dr. Williams was his compassion for food allergy families. He told me that until he started doing OIT he had no idea the impact food allergies had on a patient and their family. He said he often had parents crying in his office as their children finished OIT. He said he had just had a freshman in high school who cried while she ate her first peanut. The whole process is absolutely life changing and after so, so many years of food allergy patients and families just being told this is the way it is forever there are finally options! Having options, whether you choose to go that route or not, is a very freeing feeling!

I know I have lots of friends out there with kids with food allergies so if you have questions about anything I've learned please ask. Or if you want to discuss OIT and why we chose to explore this route I'd love to talk about it more!