Thoughts on Food Allergy Treatment - Part 2!

After my last post about food allergy treatment, there were a lot of follow-up questions from my awesome readers. I want to make sure you get all the info you need, so let’s jump on in + take a deep-dive…

Have you ever heard the saying, “the days are long, but the years are short”? That about sums up my feelings on food allergy treatment. Honestly, some days it’s a breeze and other days the struggle is real. The thoughts that run through my mind range from: “Ugh, more grinding up nuts” to “I hope my little guy doesn’t put up a fight today” to “Sundays suck because this is our big maintenance day” to “We are so fortunate and this is life-changing”. But, looking back, the last 20 months have FLOWN by and it is amazing how far we’ve come in such a relatively short amount of time. Walking by the nut butter aisle of the grocery store used to leave me in a panic and now our little guy is eating cashews! Even when sometimes feeling a little treatment burnout, I truly feel blessed that our family is able to access treatment and realize how very, very lucky we are.

The Commitment to Food Allergy Treatment

Dosing

Someone recently asked me - how much of a commitment is maintenance dosing and is it forever? The short answer is OIT dosing and SoCal Food Allegy’s TIP dosing is a huge commitment and it is something that you need to keep up with forever (or at least maybe until different treatment options become available) and when you’re in the thick of it, it feels like forever. 

Now for the long(er) answer. I highly recommend that you do not start OIT or TIP unless you know you can be committed. From what I’ve heard, if you stop the program, there’s a chance that your child’s food allergies will not stay in remission. However, I’ve read other articles that say that whatever improvements are made to your immune response should stay improved. If you are on the fence, definitely voice this concern to your doctor and find out more about the program and what would happen if you stopped during the course of treatment or if you discontinued maintenance once graduating from the program. This will really help you get a better idea of whether OIT or TIP is right for you. 

The commitment during treatment is a daily one. There are some days I wake up and it feels like Groundhog Day. I can’t believe I have to give maintenance foods AGAIN. Not to mention, later in the day is time to dose our treatment food. So, twice a day you need to be on your A-game to take care of everything. There is no vacation from food allergy treatment. When I get in this mood, I just remind myself of the big picture, suck it up and just focus on getting it done, so I can check it off my to-do list.  

Dosing some foods is more time intensive and complex than others. For instance, our egg dosing required that I separate the egg whites from the yolks and then wash the yolk sac while praying it wouldn’t break. I eventually got the hang of it and would prepare the egg dosing for a few days at a time, keeping extras for the next day or two in the fridge. 

As far as the tree nut and sesame seed dosing goes, I have to just regularly grind up the nuts and seeds before serving them to my little guy for dosing. I’m able to make and store larger quantities, so this is not a daily or even weekly task. Thank the Lord. Insert praise hands emoji.

Then, once all of that prep is done, it comes time to actually feed the allergens to your kid. At first, it felt like a blind leap of faith. Feeding your kiddo something you know to be potentially life-threatening definitely goes against that motherly gut instinct we use to guide us. 

Once I was able to ease my anxieties, it was time to get down to business. I’m so, so lucky that my little guy is a people-pleaser and mostly easygoing. For the most part, he’s been a complete champ about eating his allergy foods. There were times, however, that I would need to invent my own food allergy concoctions to prepare some foods. At one point, we needed to feed our little guy coconut flour and apple pectin as well as buckwheat flour and baked eggs. Those were in addition to several tree nuts. I tried smoothies, cookies, muffins and pancakes. He loved some of the nuts, but others, not so much. We tried giving those with honey, cream cheese, applesauce, chocolate, ketchup, jelly, yogurt and sun butter. Sometimes he would be fine with eating his allergy foods one way, only to decide the next day that it wasn’t his jam anymore. (That was always fun when we had to get out of the house in a rush to get to school). Without a doubt, going through TIP has made me more creative as a parent and a cook ;).

When starting off with the treatment, we only had to worry about one treatment food and a few “recommended” foods (i.e., foods we gave 3-5 times per week to help prep my son’s immune system for the dosing to his most severe allergens). As my little guy progressed during the program, the amount of food we needed to give him also increased. This meant adding more food prep to our lives and sometimes more ingenuity in feeding him his dosing.

Because he’s in preschool, I decided to not stress our family out with trying to get to school on time. I spoke with our teachers, let them know the situation and would usually arrive about 30 minutes late each day. I decided to take advantage of the luxury of being able to be late (since the school doesn’t hand out tardy slips) rather than rushing in the mornings and making things stressful. If you have older kids or need to be out the door at a certain time for work - not to worry - it is definitely doable and can be done without anyone freaking out. It just takes preparation, organization and a parent-child team effort. Or, contact me and I can help!

Overall, it really does become second-nature and the intimidation factor decreases as you get the hang of the program.

Clinic Appointments

At SoCal Food Allergy Institute, we usually had our appointments every six week (on average). We are in state for the clinic, so our timetable may look different than out-of-state or even out-of-country patients. Talk to your OIT or TIP doctor about what your schedule would look like in their program to evaluate this component of your food allergy treatment commitment (especially in light of COVID-19 and your level of comfort in traveling or even going to doctors’ offices).

As far as our TIP appointments are concerned, they’d go something like this… Arrive at the office, they review vitals and hook up your child to a heart rate monitor. Then a nurse comes in who reviews the treatment with you, including discussing how things went with dosing at home. The next step is to challenge your child’s tolerance of the allergen you have been treating at home. The nurse gives a pre-determined quantity of the allergen to your child to eat and then sends them off to an exercise room for five minutes to elevate their heart rate (this is monitored by medical personnel). You and your child then return to your exam room to be evaluated by the nurse for any signs of allergic reaction. If all goes smoothly, you go on to the dosing part of the visit.

During the dosing portion of the visit, your child is introduced to the next allergen you will be dosing at home. The nurse has your child eat a specific amount of the allergen in the office and then you wait for a designated amount of time to see if there is any reaction to the dose. In our case, the office dose that was given was always more than the first dose I was to give at home. This made me feel a lot more comfortable about giving the allergen at home. I knew my little guy could tolerate the first amount I was supposed to give him because he had had more at the office and was fine.

We’d then begin our six weeks of dosing at home to again return to the clinic and start the whole process over again with new allergens. Woohoo! We were usually in and out of the office in about an hour, max.

I should also mention that about 3/4 of the way through the program, our little guy again had blood work to check his IgE levels to ensure that he was responding to the program as anticipated. The lab results would also presumably be used to adjust the remaining portion of the treatment as necessary, as the remaining allergens were the ones with the most severe responses. The blood draws can be tough with our little ones, so it’s good to know what to expect going into the program.

Remission

Our treatment program has us coming back for one remission visit after clearing pistachio and cashew (most severe allergens). After the remission visit, we are to return for annual remission visits. In between remission visits, I anticipate that we will need to continue to with daily and then eventually weekly and/or monthly dosing. I’ll give an update once we get our plan.

Treatment Plans

So, now you’ve heard all about our experience with SCFAI’s TIP program, but what does this mean for you? What would your child’s food allergy treatment look like? The answer is - it depends. It depends on the doctor you go to and the type of program. It depends on if you’re in or out of state. It depends on the foods your child is allergic to. And, it depends on all of the testing results.

Peanut allergies tend to take longer to treat than other allergies. If you are only treating a couple of allergens, then your program will be shorter than someone who has 10+ allergens to treat. If you’re traveling from out of state, your protocol may be grouped differently than someone who lives close to the clinic. These are all factors take into consideration when developing your treatment plan. I suggest asking your doctor about the anticipated length of your program if you’re on the fence about it and this factor is an important one for you.

Also, I’d love to know - has anyone completed either TIP or OIT and had any problems or relapses in remission? Or, are you thriving? I’d love to hear from you!

Also, subscribe to my free resource library for cool allergy-helpful docs. I’m planning to add a OIT/TIP treatment chart to help you during your journey.