HOW ORAL IMMUNOTHERAPY (OIT) CHANGED OUR LIFE

food allergy oit oral immunotherapy

What is Oral Immunotherapy (OIT)?

Food Allergy OIT or Oral immunotherapy is a method of inducing your immune system to tolerate a food that it is currently over-reacting to. In OIT, allergenic foods are introduced into the system in gradually increasing amounts. The goal is to be able to eventually consume the food regularly without experiencing any allergic reactions.

Updated 6/26/2019

DISCLOSURE: Posts may contain affiliate links. If you purchase a product through an affiliate link, your cost will be the same but Allergic Princess will automatically receive a small commission. Your support is greatly appreciated!

Who qualifies for OIT food allergy treatment?

  1. Confirmation of allergy and review of reaction history
  2. Well-controlled asthma, eczema and environmental allergies
  3. No pre-existing EoE (Eosinophilic esophagitis)
  4. Some practices may have age requirements

Is OIT for you?

Perhaps our story may help you decide. There are many pros and cons when deciding if this treatment is the right decision for your family. I’d like to share our family’s experience with OIT treatment for food allergies and how it has impacted our life. Both our son and daughter are allergic to multiple foods and have completed clinical trials for desensitization. Our daughter just graduated flaxseed OIT at an OIT private practice

Our OIT Success Stories

There are 2 detailed OIT stories below. First our daughter’s OIT journey, then our son’s OIT journey. Each has different allergens with a very different OIT treatment.

(updated 7/10/2019)

KEIRA’S OIT STORY

Multi-allergen Trial with Xolair (7 months)

Keira is allergic to milk, peanuts, cashews, pistachios, sesame seeds, flaxseeds, shrimp, and salmon. The milk and nuts caused an anaphylactic reaction in her, including itching/swelling of the lips and tongue, hives, stomach-ache, vomiting, wheezing, and coughing.  The sesame seeds, flaxseeds, shrimp, and salmon had a more mild symptom of itchy mouth.

Keira (9 years old) participated in a 7 month multi-allergen oral immunotherapy (OIT) with omalizumab (Xolair®) clinical trial led by Dr. Kari Nadeau at Stanford. In this trial, we were able to include up to 5 allergic foods, however this did not include shrimp and salmon. Her allergens for this trial were milk, peanuts, cashews, and sesame.

Xolair is a medication originally designed to reduce sensitivity to allergens. In the trials, they are researching how it affects OIT.

The first 3 months consisted of Xolair injections that make accelerated dosing of allergens possible. The last 4 months consisted of home dosing with her allergens starting at a minuscule amount and increasing every 2 weeks. For each dose increase, we would go in to the clinic.

OIT Dosing

For the most part, dosing was easy with minimal reactions. She would take an antihistamine, Zyrtec, 1 hour before dosing as well as a daily probiotic. The most difficult time was when she started to have random vomiting seemingly for no reason. These episodes occurred anytime of the day and didn’t seem to coincide with when her last dose was taken. For example, she could have her dose at noon the previous day and vomit the next morning. She was advised to take Pepcid before dosing to see if it would help. Thankfully, these random vomit episodes stopped after 1-2 months.

In her own words, this is her story:

This trial gave me freedom to eat any foods I had always wanted to eat especially ice cream. At birthday parties I always had to bring my own food and I felt left out. When my family and I went to restaurants, I saw my brother eating foods I would want to eat. Though because of this trial, I now can try these new foods and they are very yummy. I love trying foods that I used to couldn’t eat and it’s all because of this.

OIT Success Story

After graduating from this food allergy OIT trial, Keira is now desensitized to 2 grams of protein for milk, peanuts, cashews, and sesame, except for the shrimp, salmon, and flaxseeds. She has no reaction, not even an itchy tongue/mouth/throat to these amounts of allergic foods. For one year, she stayed on her maintenance amount and took her daily doses of 2 grams in real foods without pre-dosing with an antihistamine. We found it easiest to combine all her allergens and some additional fruit into a delicious smoothie.

How much is 2 grams of protein in real food terms?

  • 0.25 cup milk or 1 Go-gurt tube or 0.3 cup ice cream or 1 inch cube of original cream cheese or 1/4 string cheese
  • 8 peanuts or 1.5 teaspoons peanut butter or 1 Reese’s peanut butter cup
  • 7 cashews or 2 teaspoons cashew butter
  • 7 pistachios
  • 4 teaspoons sesame seeds

OIT Maintenance

After the 1 year on maintenance, she now takes less of most allergens. She doses daily with 4 peanuts, 1 cashew, 1 teaspoon sesame tahini, and 0.25 cup milk. However, the goal for us was to eat like non-allergic people, so sometimes we push the limit, especially with the milk. Keira has eaten an entire 7″ mini cheese pizza with no reaction whatsoever. She also eats ice cream cones, frozen yogurt, greek yogurt, and at dessert buffets without measuring allergen amounts. Food allergy OIT is truly amazing.

As of 6/26/2019, Keira has been on maintenance for 3 years for peanuts, cashew, sesame, and milk.

As for the shrimp and salmon, she desensitized those in the individual innovative clinical care program (not part of a clinical trial) and now takes a daily maintenance dose. She measures out a small piece of cooked shrimp on her scale, seasons it with wheat-free tamari, then eats it. For the salmon, she measures out a small piece of smoked salmon, then eats that. The amount to eat was determined by her allergist. 

Keira just graduated flaxseed OIT at an OIT private practice with a maintenance dose of 1/2 teaspoon of flaxseed meal. (7/10/2019)

CONNOR’S OIT STORY

Peanut OIT Trial (3 years)

Connor is allergic to peanuts, cashews, almonds, hazelnuts, and walnuts. He is anaphylactic to these and we’ve had to use EpiPens in the past. When he got accepted into a 3 year peanut trial at the age of 10 years old, we were ecstatic to begin this road to freedom.

The 3 years of this peanut trial broke down into 3 phases: dose escalation, maintenance, and tolerance.

The first year of OIT was dose escalation. He started with a minuscule amount of peanut flour and increased every 2 weeks. An antihistamine, Zyrtec, was taken one hour before his dose of peanut flour mixed into applesauce. He would dose at home daily for 2 weeks, then go in to the clinic for a dose escalation. This continued for a year. Dosing was pretty easy for him. For a few days after each escalation, he would get a reaction of an itchy mouth for about half an hour. He escalated as high as 4000mg of peanut protein flour, which is equivalent to about 16 peanuts. There are typically 2 peanuts inside each pod/shell.

The second year, he ate a daily maintenance dose 4000mg peanut protein flour mixed with applesauce or fruit smoothie.

The third year is where it got interesting. He could have randomized to a lower dose of peanut or switched to the placebo group which was oat flour. We are pretty sure he was randomized into the placebo group. With 3 months of this daily placebo dose, he failed his food challenge in the clinic. He could no longer tolerate the 4000mg and got a serious reaction. Two hours after his dose, he felt shortness of breath. Thankfully, with medication, he recovered.

OIT Maintenance

With the failed food challenge, came the graduation from this food allergy OIT trial. Connor started daily dosing again, this time with real peanuts. He eats 2 peanuts a day. He also started OIT as part of the individualized clinical care program for his other nut allergens: cashews, almonds, hazelnuts, and walnuts.

As of 6/26/2019, Connor has been on maintenance for 3 years for peanuts and is in various stages of buildup and maintenance for the other tree nuts.

Why We Chose Food Allergy OIT

After years of strict avoidance, a few occasions requiring epinephrine and Emergency Room visits, we wanted to be pro-active about our children’s food allergies. After all, high school life would be here before we know it and the kids would be more independent without us parents always hovering over them for protection. I wanted them to be safer in this world, to not always have to worry about the cross contamination of foods and what other’s have touched. Emotionally, I wanted them to feel like any other kid, to have the freedom to share food or try something new without worrying about life and death all the time. Life with food allergies is stressful. Sometimes we feel helpless. So we chose OIT.

Pros of OIT

It’s LIFE CHANGING. We don’t need to worry about cross contamination anymore. Allergic reactions due to eating out have all but disappeared. We don’t need to ask to speak to the chef.

Kids can now participate in school parties and birthday parties and eat what others eat. I don’t need to supply emergency allergy safe alternative treats to the teacher. They’re no longer singled out!

My kids can go for sleepovers at their friend’s house now. And there’s so many more pros I can’t even name them all. The quality of life is just so much better. A huge weight has been taken off our shoulders.

Life has less stress and less anxiety. Doesn’t that make the entire family healthier?

Even washing dishes is easier because I don’t need to worry about which plate had milk on it. Cooking is easier because I can make a sandwich with a slice of cheese and not have to wash my hands before opening the fridge. I could go on and on.

Cons of OIT

OIT requires a huge time and mental commitment. Let me underscore HUGE.

Before starting OIT, you should confirm whether you are allergic with food allergy testing.

Specific for trials (not private practice OIT), there were double blind food challenges that required 2 full days for each food. Every 2 weeks, we go in for a dose escalation appointment which took about 3 hours. Every 3 months, we had a skin test done and a blood draw. The blood draws were typically 4 vials worth. These were taken for research since it was a clinical trial. At certain transition points during the trial, we went in for double blind food challenges again (for example, at the transition from year 1 of up-dosing to year 2 of maintenance for the 3 year peanut trial).

For private practice OIT, we go in for a dose escalation (or updose) appointment every 2 weeks. These appointments last about 1.5 hours.

Rest period of  1 hour before and 2 hours after dosing. To minimize an allergic reaction, they recommend no exercise for 2 hours after dosing. Initially, we thought this might be a problem since how do you get a kid to sit still for that long. We soon figured out that it was easier than it sounded.

It just meant to avoid any after school physical activity such as soccer or swimming. Walking around the block or going to the mall or grocery shopping were all fine. What worked best for us depended on the day. When there was no scheduled sport after school, Zyrtec was taken immediately when arriving home. An hour later, they would take their dose.

On days where there was an after school sport, they would take a Zyrtec after the activity, shower immediately when arriving home. Then an hour later, take their dose, most likely with dinner. With homework and quiet time in the evening, the 2 hour window was not a problem. Just remember to never take the dose on an empty stomach, so eat some carbs (like crackers or bread) along with the dose.

There’s always risk of an anaphylactic reaction. With my daughter, she required epinephrine injections on a few of her food challenges. However, I felt she was in good hands and trusted the ability of the doctors, nurses, and clinicians to take care of her. The clinic was located in the hospital and it was the best place for it to happen. With a pre-dose of an antihistamine, Zyrtec, reactions at home remained small. There was never more than 45 minutes of itchy mouth.

Not everyone is a good candidate for OIT either. You may be too allergic or not allergic enough. This will be determined by your IgE levels, that’s the allergen-specific immunoglobulin E (IgE) from your blood test and/or skin testing and/or past medical history.

Consider the Age for OIT

Age should definitely be considered when starting treatment. My kids were a bit older, at 9 and 10 years old, so they understood what was happening and that taking the doses would help them in the long run. You can’t really explain that to a younger child. Blood tests are difficult, you have to stay very still. If you are doing OIT with Xolair, the injections can be tough. The needle stays in for a while and there was an injection into both arms at the same time. I remember my daughter asking for the cold and vibrating Buzzy bee to make it easier. Consider if your child can willingly eat the dose everyday and can tell you any symptoms.

Do all OIT’s require injections?

For our family, my daughter’s trial included Xolair injections to speed up the dosing escalation process. My son’s trial did not include Xolair injections. You could say that it was done in a more “natural” way. The blood draws every 3 months for both of their trials was because it was a clinical trial and the blood was collected for research. There are no blood draws in private practice OIT.

Clinical Trials vs. Private Practice OIT

Our daughter just graduated flaxseed OIT at an OIT private practice (PPOIT).

Clinical trials OIT: There are clinical trials for all ages. Children, teens, and adults. Each trial has their own eligibility rules. Since trials OIT is for research, and thus to advance science, it includes extra food challenges, skin prick tests, and blood draws that are not necessary in private practice OIT.

Private practice OIT: Private practice OIT (PPOIT) is available through a limited number of practices. Most allergy doctors still do not offer this food allergy treatment. If you’re lucky enough to have a clinic locally or willing to travel for OIT, make sure to inquire about the medical professional’s food allergy treatment training and their past experience. The practice should also have a protocol in place for what to do  in case of an allergic reaction and a 24 hour emergency phone line.

Individualized care: I have heard rumors that clinical trials OIT is rigid and will not tailor the dosing to your needs. This is simply NOT the experience our family had. The number one priority is safety and I believe that we got the best individualized care in both the clinical trials as well as private practice OIT. When we hit bumps in the road, doses were modified accordingly in both settings. Everyone’s OIT journey will be different and your provider should be accommodating.

OIT Support Group

You can find me (Jennifer) in the OIT Support Group I run on Facebook – it’s a safe place for you to ask questions and have discussions with other like-minded people who are going through a similar treatment. The OIT roadmap is full of curves and bumps. Let’s cheer each other on and help one another! See you on the inside!

Is Oral Immunotherapy the Cure for Food Allergies?

Will the daily doses have to be taken forever? We don’t know. Researchers are currently working on these answers. However, we do know that all the effort put into desensitization is worth it to be safe out there in the real world and to have a better quality of life. We feel so fortunate to be a part of Stanford’s trial to help allergy research move forward.

NEIL’S OIT STORY

You’ll want to check out Nina’s story about her son Neil. His journey with egg OIT and tree nuts OIT is very different than my 2 kids above. Read it here:

What do you think? Could OIT be in your future? Share your thoughts in the comments.

For Further Reading:

Be sure to pin it:

Is OIT for you? There are many pros and cons when deciding if this treatment is the right decision for your family.

3 Comments

Leave a Reply

Your email address will not be published. Required fields are marked *