OIT Update: 2 years of Maintenance

My son Sahil completed the updosing phase of peanut OIT in October 2017 when he was 13 years old.  He has been in the maintenance phase for 2 years!

His very first dose was 1/1000th of a peanut given in solution form;  The amount was increased gradually by his allergist over almost 8 months until  his final updose – 2 peanuts.  Since building up to 2 peanuts he has been eating them daily to maintain the desensitization.   After completing peanut OIT he passed oral food challenges to soy protein, walnuts, almonds, hazelnuts and cashews.  Since passing those challenges he has incorporated soy and tree nuts in to his regular diet.

His 2 year follow up appointment was on Oct 30, 2019.

About one week prior to the follow up appointment he had bloodwork done:

Peanut IgE = 80.9; to put this in to perspective – every peanut IgE from age 2 and up had always been >100.

Ara H2 = 21.2. In October 2018 it was 54.7.

After 6 months of OIT the wheal size (the raised area) was 11mm; after 1 year it was 6 mm.

The skin prick test for peanut on October 30 showed a 4mm wheal.

Skin Prick Test Oct 30, 2019

Q & A with Sahil

Many of these questions were submitted by parents of kids with food allergies and a teen currently in the updosing phase of OIT.

Q. How is your life different pre and post OIT?

A. Before OIT anytime I tried a new food I’d get kind of anxious and sometimes I felt like it was hard to breathe. When this happened I just reminded myself that unless my face or mouth was getting itchy I was probably fine but it still made me nervous.  Before OIT we had to pre-plan everything. I couldn’t just go to a friend’s house or eat out with them.  Since doing OIT I can go to my friends’ homes and eat there instead of bringing my own food. I go out to restaurants and movies without worrying about taking my own snacks. I don’t worry at school if someone is eating a peanut butter sandwich around me or when teachers pass out Timbits or other snacks.

Q. Is taking the daily dose annoying? How do you make it part of your daily routine? What happens if you forget?

A. Taking the daily dose is a habit now – like brushing my teeth; I know I have to do it. I don’t really forget.  I eat it right after dinner.  I try not to have my dose too late  but sometimes I’m busy during the day; the latest I’ve had my dose is about 8:30 pm.   If I did forget I’d have to take  the illness dose (1/4 of my daily dose – which is 0.5 peanut) the next day.

Q. Is it hard to be inactive during your rest period?

A. It  wasn’t hard for me.  I usually do my homework or play on my phone or playstation.

Q. Do you bring your epi-pen with you all the time?

A. I still take it everywhere. I don’t wear it around my waist but it’s in my backpack or pocket.

Q. How do you feel anxiety wise about going to new restaurants with friends, or travelling with them ?

A. The first time I tried different restaurants after graduating from OIT I was scared because it was so new.  But now I know nothing will happen so I’m more relaxed. I still ask for food without peanuts as an ingredient but I’m not worried about cross contamination.  I ate at a Thai restaurant for the first time in the summer and the food was so good.  That’s something I never would have risked if I hadn’t done OIT.

Q. Did you have fears in the beginning? If yes what were they?

A. I was scared of having a reaction. And when I first started I actually felt like I was having one.  I told myself to breathe and try and relax and then those feelings went away.  Dr Mack was really great at explaining that the first dose was 1/1000th of a peanut and below the threshold to cause an anaphylactic reaction.  I wasn’t actually having a reaction – I was scared and anxious and that was causing the physical feelings.

Q. Did you tell your friends about OIT? What did they think of it?

A. At the start I didn’t tell them because I was kind of embarrassed since I had told them that peanuts could kill me and now I was ingesting small amounts of it.  I also didn’t think they would understand and they might think it was okay for me to eat stuff that I couldn’t.  As I got older I told some close friends so they would know why I couldn’t play soccer or basketball with them for a couple hours. I’ve only really told 3 or 4 of my friends. They think it’s really cool that I can eat at their homes and go out with them now.

Q. During the process did you ever think of stopping?

A. At the start when I had to take large amounts of the liquid peanut I thought it tasted terrible and I wanted to stop. I also wanted to stop when I had some mild reactions mid-way.  Those were reflux type reactions and had more to do with the amount of solution I had to swallow.  It was much easier when I started on the nuts.  The actual peanut tastes much better than the liquid and it is less to swallow.

Q. (from a teen doing OIT) What sort of mentality did you need when you had to take large amounts of the super sticky and gross solution? I have to take 15ml a day for the next 5 weeks because I’m doing OIT for three nuts and I struggle everyday with the taste.

A. I hated the taste a lot too. Sometimes it would take me ten or fifteen minutes to swallow the whole dose.  I always tried to eat food before and after to mask the taste. I ate a lot of chocolate pudding and applesauce.  I can’t eat either of those things now – it brings back memories of the gross solution.  I knew I was going to be able to eat whatever I wanted if I kept going, so I always had that thought in my head when I had the solution.

Q. Do you eat “may contain” items? Does it worry you?
A. I do eat may contain peanut items once in a while. I’ve been to a Thai restaurant and I tried Turtles last month for the first time.  It doesn’t really worry me because I know that whatever amount is in the may contain is less than what I take for my daily dose.

Q. The 2 hour rest period is required after taking the dose so intense physical activity is limited.  If a child is very active in sports would this change one’s lifestyle or routines?

A. If you’re very active in sports it would probably affect your schedule. I guess you can dose early in the morning before school or like I do after dinner.  You’d definitely have to plan ahead to work out the dosing times and rest periods.
Q. Do you have any words of advice for someone starting OIT?
A. When you start dosing it is going to be scary because you are told to eat something that you’ve avoided for your whole life.  You may have reactions but if you respect the rest period and dose on a full stomach it helps.  The freedom is worth it!

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2 Comments Add yours

  1. Christine says:

    Excellent answers. It really helps understand the process of how you have to avoid something that is lethal; then incorporate it into your daily routine. Luckily, with online games, 2 hours can go quickly. Lol!

    Like

  2. dhawan905gmailcom says:

    What an amazing journey that Sahil and your family have been on and it’s so wonderful to hear in his own words how OIT has transformed his life!!

    Like

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