How We Successfully Navigated Oral Immunotherapy (OIT): A Parent's Complete Guide

The day an allergist told us we could desensitize my child's body to his worst allergen, I felt a mix of hope and terror. After years of EpiPen anxiety and constant vigilance, could we really train his body to tolerate the allergen that sends him to the ER?

Two and a half years later, my son can safely eat buttered anything. But the journey wasn't easy, and there were lessons I wish I'd known from day one.

If you're considering OIT for your child or just starting the process, here's our experience—the victories, the setbacks, and the practical insights that helped us succeed.

What Is Oral Immunotherapy (And Is It Right for Your Family)?

Oral immunotherapy involves giving your child gradually increasing doses of their allergen under strict medical supervision. The goal isn't to cure the allergy, but to raise the threshold of what triggers a reaction—essentially building tolerance.

Our son's profile when we started:

• Severe dairy allergy (diagnosed at 13 months old)

• Strict avoidance of anything dairy and fear of contact with dairy

• Age 5.5 when we began whole milk OIT

Why we chose OIT: The constant fear was exhausting our family. My son was getting older and becoming anxious about food, and I realized we needed to look for options to lessen our fear and anxiety.

Important note: OIT isn't right for every child or family. It requires significant commitment, carries real risks, and should only be considered with an experienced allergist.

Finding the Right Allergist and Program

Not all allergists offer OIT, and not all OIT programs are created equal. Here's what we learned about choosing the right fit:

Red flags to avoid:

• Doctors who promise OIT will "cure" allergies, or who can't answer your questions

• Programs that seem rushed or don't emphasize safety protocols

• Practices that don't have emergency protocols clearly established

• Anyone who downplays the risks or time commitment

Green flags that gave us confidence:

• Our allergist had years of OIT experience with excellent safety records

• Clear protocols for every phase of treatment

• 24/7 emergency contact availability

• Honest discussions about success rates and potential outcomes

• Other families willing to share their experiences

Questions to ask about their OIT program:

• What's your success rate for my child's specific allergens?

• How do you handle reactions during treatment?

• What happens if we need to pause or stop treatment?

• What's the long-term maintenance plan?

Our doctor search: We interviewed many allergists and looked into the Food Allergy Institute in Long Beach, CA. Ultimately, we felt very lucky to have found Dr. Sanjiv Jain when we were living in Seattle. He knew of the Food Allergy Institute and Dr. Randhawa and compared his protocol to theirs. Not only was he closer, we felt he was the right fit for us and our son's allergies. Now that we are in Austin, TX, we see Dr. Stacy Silvers. If you give any of them a chance, please let them know I referred you.

The Three Phases: What to Actually Expect

Phase 1: Build-Up

What happens: Starting with microscopic doses, increasing every 1-2 weeks. Our experience: The first few months were nerve-wracking with a couple setbacks during up-dose of diluted milk to water. Biggest challenge: Sticking to exact timing and dosing schedules.

Practical tips that helped:

• Set phone alarms for dosing times (we did afterschool 5 PM daily)

• Keep a detailed reaction log, even for minor symptoms

• Have antihistamine and EpiPens easily accessible

• Plan up dosing around your schedule (not before travel or big events)

What surprised us: How quickly my son adapted to the routine. It became as normal as brushing teeth.

Phase 2: Maintenance

What happens: Taking the same dose daily to maintain tolerance. Our experience: Much more predictable, occasional minor reactions. Biggest challenge: Keeping calm for up to 2 hours daily after dose.

The maintenance dose reality: My son drinks at least 1/2 cup of milk daily. It's not huge amounts, but it's life-changing protection.

Phase 3: Long-term Outlook

What we're doing now: Daily maintenance doses, gradually relaxed vigilance. Current status: He can eat dairy ice cream, cheese, baked goods, and foods cooked with dairy.

Ongoing reality: We still carry EpiPens and avoid large amounts of his allergens.

The Hard Parts No One Warns You About

It's Emotionally Exhausting

We had a huge setback due to an illness and had to fall back to almost the beginning that took us months to get back up to our previous dosage. But we eventually climbed back up.

For months, you're intentionally giving your child something that could hurt them. Even with medical supervision, the mental load is significant.

What helped: Regular check-ins with our allergist, connecting with other OIT families, and reminding ourselves why we started.

Reactions Still Happen

Our son had several reactions during treatment— stomach aches, hives, and itchiness were fairly common, especially during illness or stress. He occasionally has minor reactions, during his 2-hour dosing window.

What we learned: Illness, environmental allergies, exercise, and stress all affect how well the body tolerates allergens. We learned to adjust accordingly.

The Social Aspect Is Complicated

Other parents sometimes assumed OIT meant our son was "cured" and completely safe. We had to educate family and friends that he still has food allergies—just with a higher threshold.

It's a Long-Term Commitment

This isn't a treatment you complete and forget. Allergy maintenance is likely lifelong, and we still read every label and carry emergency medications.

What Success Actually Looks Like

Before OIT:

• Reactions from trace exposures

• Anxious around all things dairy

• Fear of cross-contamination from shared surfaces

• Scrutinizing every ingredient list

After OIT:

• My son can eat dairy products safely, even those with dairy warning labels

• We're comfortable with him stepping into an ice cream shop

• He can participate more in school activities and parties

• The constant anxiety has decreased

But success isn't "normal eating": I still get a bit anxious when he consumes dairy. But in reality, OIT gave us protection and peace of mind, not unlimited freedom.

Practical Tips for OIT Success

Before You Start

• Build a trusting relationship with your allergist

• Get your family on board—this affects everyone's schedule

• Stock up on emergency medications and keep them current

• Connect with other OIT families for support (I'm happy to help)

During Treatment

• Timing matters: Be consistent with daily dosing times

• Document everything: Keep detailed records of reactions, even minor ones

• Plan around illness: Work with your doctor on protocols for sick days

• Stay flexible: Some weeks will require dose holds or reductions

Managing Reactions

• Have a plan: Know when to use antihistamines vs. when to use an epinephrine autoinjector vs. when to call the doctor

• Don't panic: Understand that reactions happen during OIT

• Communicate clearly: Report reactions to your medical team

• Trust your instincts: You know your child better than anyone

The Questions We've Come Across

"Is it worth the risk?" For our family, yes. The daily anxiety and constant vigilance were affecting my son's quality of life. OIT gave us both confidence and protection.

"How much does it cost?" Insurance coverage varies widely. Budget for emergency medications and follow-up appointments too.

"What if it doesn't work?" Some children don't respond to OIT or can't tolerate the process. My child likes the taste of cow's milk, so drinking it daily wasn't a chore. I've heard some kids didn't like dairy milk, so their families decided not to go through with milk OIT. Having realistic expectations and backup plans is important, which is a conversation to have with your allergist.

"Can we try it for multiple allergens?" We started with dairy only. Doing multiple allergens simultaneously can be more challenging. Speak with the allergist.

Decision-Making Framework for Families

OIT might be worth considering if:

• Your child has severe, life-threatening allergies

• Current management significantly impacts quality of life

• You have access to experienced OIT providers

• Your family can commit to the time and consistency required

OIT might not be the right choice if:

• Your child's allergies are well-managed with avoidance

• You don't have access to experienced providers

• Your family travels frequently or has unpredictable schedules

• Your child has other medical conditions that complicate treatment

Our Life Now: Two and a Half Years Later

My son still has food allergies. He still carries EpiPens. We still read labels.

But the fear that once dominated our daily life has shrunk to manageable proportions. We no longer fear spilt milk. He's more confident and resilient in ways that extend beyond food.

The decision to pursue OIT was right for our family, but it's not right for everyone. It's a tool, not a cure, and it comes with real commitments and ongoing responsibilities.

According to my son, he likes OIT because "it has helped him eat foods he couldn't before." What he doesn't like about OIT is that he "has to be calm for 2 hours after dosing."

If You're Considering OIT

Start with honest conversations—with your allergist, your family, and yourself. Research providers thoroughly. Connect with other families who've been through the process.

Most importantly, remember that there's no "right" choice. Whether you pursue OIT, stick with avoidance, or explore other treatments, the best decision is the one that works for your family's specific situation.

Resources for Learning More

• FARE (Food Allergy Research & Education): Comprehensive OIT information

• OIT101: Online community and resource hub

• Your allergist: The most important resource for your specific situation

Overwhelmed by all this and want to connect? Every family's path is different, and sometimes you need support to navigate the options and decisions ahead. I'm happy to be your food allergy gal pal. Subscribe to Food Allergies Strong's Newsletter in the footer below to connect.

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Remember: This information is based on our family's experience and should not replace medical advice. OIT should only be pursued under the supervision of qualified medical professionals experienced in food allergy treatment.