OIT- Our Food Allergy Eradication Journey
Guest post by Nina Aggarwal
FOOD ALLERGY LIFE
Fear, panic, and isolation. These are only just a few of the emotions that begin to describe the feelings a parent goes through when they discover their child has a life threatening food allergy. Life will never be the same.
Long gone are the carefree days we had when we could dine out wherever we wished and eat whatever we felt like in the moment. We now have this precious child who can never be left alone without a watchful eye, and spend many sleepless nights wondering if our child is okay and if he possibly had an accidental food exposure.
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FOOD ALLERGY FACTS
How will he ever attend school safely? Will he be a target for bullying? Food allergies are a growing epidemic in our country, and more and more children continue to become diagnosed with them. 1 in 13 children currently have or will develop a life-threatening food related allergy.
Research is still very unclear as to the true cause of food allergies and why they are on the rise. Chances are extremely high that your child will have a friend or peer who is affected by a life threatening food allergy. In fact, many children will need an epipen at some point in their life due to an undiagnosed food allergy due to a food they came in contact with that they had previously never encountered.
ALLERGIC REACTIONS AND ANAPHYLAXIS
We discovered that our oldest son was severely affected by many foods as an infant, with inexplicable eczema.
On two occasions during toddlerhood, he’s suffered anaphylaxis (in his case, eyes swelling shut, full body hives, vomiting, and breathing difficulty) requiring the use of an epipen due to exposure to eggs, which is a common food found in so many items.
He was also contact sensitive, briefly touching mayonnaise on his skin resulted in huge hives.
SOCIAL EVENTS WITH FOOD ALLERGIES
Careful, obsessive vigilance took over our lives, and things would never be the same. We no longer felt comfortable attending social events, birthday parties, or even going to a place where any foods would be present for fear of his life. It was socially isolating, and many people don’t truly understand what it is like to live with this fear day to day.
Each time we would receive an invite to a party/social event, and agreed to attend, we would have to pack a separate picnic for our son so he could have something to eat and minimize risk of cross contamination. We don’t put the responsibility on our hosts to provide safe meals because he is allergic to eggs, and many tree nuts, and many people are not aware that cross contamination is a serious, scary, and potentially deadly issue.
Food is something that appears to bring people together socially. Declining invitations and continually explaining to well-meaning hosts why it was SO stressful for us to attend became exhausting , or even coming up with a response to comments such as insisting “just a little won’t hurt him right?”.
Food allergy parents are sadly often labeled as having hypochondriac tendencies. It is my hope that sharing our struggles and experiences will raise awareness and offer a snapshot into our lives as a food allergy family. I have also shared some pictures that are difficult to look at, but a good way to remember how far we have come since being diagnosed.
Eggs in particular are an extremely difficult allergy to live with as they are ubiquitous in all baked goods, sauces, dressings, and unfortunately in most common party foods served at celebrations. Even when an item doesn’t explicitly contain eggs, the chances are extremely high that eggs were processed in that facility, and he could come in contact with cross contamination.
We were told by his original allergist that based on blood work, he would likely never ever outgrow it, and that it was historically one of the highest numbers she has ever seen in a child. He hasn’t truly dined out in a restaurant since birth due to fear of what may happen.
ORAL IMMUNOTHERAPY – OIT
There IS hope now, and we are living proof that times are changing and that there are therapies out there that can change the daily lives of food allergic children.
In September of 2015, we were fortunate enough to enroll our son in an oral immunotherapy (OIT) program in order to desensitize his body to egg.
For the past six months, we have been going to weekly four-hour appointments where he is given a small amount of the allergen in a controlled environment, gradually increasing the dose while watching him for signs of symptoms that he isn’t tolerating a dose.
His vital signs are monitored every 30 minutes, and his dose is gradually increased. We are required to give him his safely tolerated dose twice a day, every day, and come into the office for increases on a weekly-basis.
The process is slow and careful, tailored to the patient, and symptoms are typically on the milder side due to the gradual nature of the food introduction (they strongly aim to never have a patient experience anaphylaxis during the whole process).
OIT SUCCESS STORY – ONE EGG A DAY
In February 2016, we were pleased to announce that he officially became an egg graduate! At the beginning of our journey, he could not safely tolerate 0.1 mL of a 1/100 dilution of whole egg solution, and is now consuming the equivalent of an entire egg a day, plus whatever extra baked foods that he wants to eat.
We have to be extremely vigilant because of all of his tree nut allergies- We are hoping to desensitize him to tree nuts in the near future. Our biggest proof (besides daily ingestion) that the therapy is working was we noticed a 6 fold decrease in his blood IgE levels to egg after 6 months of treatment! We are hoping that those numbers trend towards 0 for egg in the near future, which can indicate full desensitization.
OIT vs. AVOIDANCE
While oral immunotherapy is currently being used widely in clinical trials, there are only a handful of doctors treating patients in private practice.
It is still a relatively new therapy and requires potentially significant time, financial, and emotional dedication. Treating one allergen can take 4- 6 months to a year or beyond of weekly therapy, and once therapy is completed, the patient is required to eat their allergen on a daily basis to maintain tolerance – only time and research will tell when a child is fully desensitized and this daily requirement won’t be as necessary.
Many children have to take significant time off from school for treatment, and there are daily restrictions on physical activity after dosing with the allergen. However, we felt that living a life of egg avoidance without issues would be nearly impossible for him as he got older and we couldn’t 100% control what foods he came into contact with.
For us the decision was easy and for others it isn’t a trivial choice as it requires much sacrifice, and possibly traveling long distances to find a willing doctor. Some kids might not even enjoy the foods they are allergic to, and in these cases avoidance may be best.
PRIVATE PRACTICE OIT
We are beyond blessed and grateful to have found an amazing doctor working in private practice offering OIT to patients only an hour away. Being an OIT physician requires that you be available to your patients 24/7 for support and guidance. It is a self sacrificing field, and we also understand why it’s difficult for many physicians to offer it. We hope that this therapy will become more widely available so our current doctors can have support from other allergists to help ensure that all who are currently suffering can safely overcome their allergies.
FOOD ALLERGIES IN SCHOOL
Food allergies affect us all, especially vulnerable children who can be the recipients of bullying and constant exclusion who already live their lives in fear of getting sick. Many schools are becoming more supportive of food allergies, and requiring nut-free lunches for all children, and some children may resent that one child that has the allergy because it affects what they can bring to school.
If you know a family with a child with food allergies, try to be as compassionate and inclusive as you can. There are so many small things you can do to make the family feel welcome in your communities, and we as food allergy parents greatly appreciate small gestures to keep our children safe!
I was really brought to tears when the mother of my son’s classmate told me that she immediately stopped sending her child omelettes to school upon learning of my son’s egg allergy because our kids were good friends and played together often. I did not ask her to do this, but it was really thoughtful of her.
FOOD ALLERGY GATHERINGS
Many food-related events and holidays can cause great distress for parents, so discussing ways that their child can still participate safely with the parent means more than you can know to them.
Simple things would be requiring families to list all ingredients during group potlucks, keeping a safe clean area for foods that don’t contain specific allergens when a parent requests it. If allergens are present, have all children wash hands after meals to minimize chances of allergen cross contact with affected child.
Always ask about food allergies/dietary restrictions in general before hosting an event, and let everyone know!
We are lucky to be living in an age where there are an increasing number of options of foods that are top 8 allergen free (Dairy, Soy, Egg, Peanut, All Tree Nut, Shellfish, Fish, and Wheat) – so consider offering some of those at your next playdate/event , or also consider more food-free events, or at least top -8 allergen free.
TEAL PUMPKIN PROJECT FOR HALLOWEEN
Halloween is an especially difficult time for food allergic kids, consider supporting the teal pumpkin project, which offers non-food Halloween treats (pencils, stickers, toys, etc) so that our food allergic children can feel safe and included- simply place a teal colored pumpkin at your door indicating that you are a offering safe treats!
WHERE WE ARE TODAY
UPDATE June 2019 – Our son continues to lead a life of absolute freedom!
He is now 7 years old and entering second grade. He completed Oral immunotherapy for 5 tree nuts (hazelnut, walnut, pecan, cashew, pistachio) in spring of 2016 in an amazing 11 short weeks. He now eats several grams of each nut on a daily basis, in addition to any extra nut product he enjoys, and can dine out at any restaurant without restriction!
He now eats unlimited egg products, and his blood IgE levels have gone down ~10 fold for all of his nuts and eggs. He also completed SCIT (subcutaneous immunotherapy, also known as allergy shots) for his environmental allergies and asthma control and we have seen an impressive improvement in his quality of life.
He does need to continue to eat his foods on a daily basis for the foreseeable future, however we are hopeful that by the time he reaches high school/college he will be able to relax a bit with the daily food requirement and simply incorporate these foods in his diet on a regular basis. We are so grateful for where we are at today with managing food allergies and are happy to help and support others on their journey.
If you would like to learn more about food allergies in general or our experience in treating our son, feel free to reach out! There are currently a number of online support groups to gain information and knowledge about private practice OIT.
Thank you for reading and sharing in our journey! We owe our deepest gratitude to Dr. Sanjeev Jain and incredible nursing staff at Columbia Allergy and Asthma Clinic in Fremont, CA (they currently have expanded service to 12 clinics around the pacific northwest) for having faith in our child and enabling him to lead a life free of anxiety and fear.
We are especially grateful for the HOPE that was given to us after being told that our son would likely never be able to tolerate these foods.
Feel free to reach out to us for support or questions any time!
Find Nina in:
- Free OIT Support Group: OIT Food Allergy Oral Immunotherapy Treatment Support Group
- Dr. Jain’s Patient Support Group: Dr. Jain OIT/SLIT Patient and Parent Support Network
CONNOR AND KEIRA’S OIT STORY
You can also check out Jennifer’s story about her kids, Keira and Connor. Connor did peanut OIT and followed up with tree nuts OIT. Keira did 4 allergen multi OIT with Xolair and followed up with salmon, shrimp, and flaxseed OIT. Read it here:
What do you think? Could OIT be in your future? Share your thoughts in the comments.
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