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.

Patriotic Smoothie Popsicles for 4th of July!

Happy 4th of July everyone!

In celebration of our country's independence, it's always fun to take the patriotic theme up a notch, so let's do it! Get your popsicle molds ready because it's about to get red, white and blue up in here...

My kiddos and I love making smoothie popsicles by experimenting with different ingredients and throwing them all in the blender. There are so many variations. Want a more smoothie-like base? Try milk or a plant-based mylk to start. Want a thinner consistency? Use water or coconut water. Add fruit (and veggies!) from there + throw in some ice cubes if that's your thing.

Don’t have any popsicle molds? That’s okay! Use only 1 cup of your base liquid and add some ice cubes for a creamier texture. Then put each smoothie side-by-side in a bowl to create a red, white and blue smoothie bowl! Top with berries, banana slices, hemp seeds or coconut flakes to stay on theme ;).

The best part about all of this, is the ingredients are completely within your control, so it’s easy to make tweaks so that they’re allergy-friendly for your particular needs. Check out my recipe suggestions:

Red Pops:

• 1 - 1.5 cups of base liquid

• 1/2 cup of raspberries

• 1/2 cup of strawberries

• Additional Options-

  • Chia or hemp seeds for protein

  • Honey (to desired level of sweetness)

White Pops:

• 1 -1.5 cups of base liquid

• 1.5 cups of frozen pineapple

• 1 banana (frozen if possible)

• Additional Options-

  • 1/3 cup of yogurt (dairy or non-dairy)

  • Hemp seeds

  • Honey (to desired level of sweetness)

  • 1/2 tsp. vanilla extract

  • Top with coconut flakes

Blue Pops :

• 1 - 1.5 cups of base liquid

• 1/2 cup frozen blueberries

• 1 medium banana

• Additional Options:

  • 1-2 tsp. blue spirulina (blue majik)

  • 1 small handful of spinach

  • 1/4 avocado (for creaminess)

  • 1 tbsp. sunflower seed butter 

  • Hemp or chia seeds

  • Honey (to desired level of sweetness)

Enjoy and tag me on Instagram in any popsicle photos (@hey_kimk) - I'd love toSubscribe the Hey, Kim K. Newsletter right here! check out your creations! And, let me know in the comments how everything turns out :)

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Race + Food Allergy Equality

Together we can make changes in the food allergy community.

Today I attended a webinar. The topic was “For The Health: A Conversation on Race and Food Allergy.” It was eye-opening and inspiring. My gratitude goes out to Food Equality Initiative for hosting the event and to Thermo Fisher Scientific, Alerje and Spokin for their sponsorship.

The panelists were extremely dynamic and had so much information that covered many areas applicable to the food allergy community and the BIPOC community within. Make sure to check out all of these great leaders listed in detail below!

All of the messages and information provided during the webinar showed me how far we’ve come and that there’s so much more we can do…

So, what can we do? I’ll go over my webinar notes with you and give you some solid suggestions for taking action, as recommended by the panelists.

In General

• There is a real disparity between health, resources and education in the BIPOC community and white community when it comes to food allergies.

• Black children are 7% more likely to have food allergies compared to white children.

• Interested in what Dr. Lakiea Wright is doing? She’s committed to educating communities about food allergies, is advocating to ensure children of color are included in clinical studies and creating a science lesson and activity to disseminate to kids in under-served areas and eliminate disparities.

• Javier Evelyn spoke about, Alerje. It’s an app and product that has definitely piqued my interest. It’s a a smartphone case that carries a slim epinephrine auto-injector and connects to an app. For more details, click here for an article I found about him and Alerje.

• Denise Woodard spoke about her motivation for creating Partake Foods and her belief that everyone needs to be educated about food allergies and advocate for policy change. P.S. - Our family loves Partake’s cookies!

• Thomas Silvera and Dina Silvera spoke about why they created Elijah-Alavi Foundation, the passing of Elijah’s Law, their advocacy and education efforts and some projects they’re working to develop to support children and parents.

  • Dina also gave some great tips for dealing with schools in the case that you get push-back when advocating for your child’s food allergies:

    • She said not to be timid in bringing this up to teachers, administrators and staff. It is a serious issue and needs to be treated as such. Be strong. Be stern.

    • Come with medical forms. These are legal documents that entitle your child to rights within the school system. They cannot be ignored.

    • Find out if there’s a nurse (or someone else in a similar role) and ask about that person’s hours. Some are not there full days or even everyday and it’s good to be aware of who would be handling a potential food allergy reaction. It is also important to make yourself known to that person and let them know about your child’s needs.

    • Make sure to fill out a 504 plan or IEP to document issues pertaining to your child’s food allergy disabilities. She prefers an IEP because it not only deals with medical issues but also addresses educational support. (A fellow attendee posted this link to an article for more information on 504 plans).

• Emily Brown spoke about Food Equality Initiative and how it is important to educate yourself on how best to help the BIPOC food allergy community. That being said…

How to Help

• You can make a difference by making a donation. The above-linked organizations have some great and impactful projects that are both ongoing and in the works. Assisting them with funding so that they can get things done is a great way to make a difference. Click on the organization name for a direct link to donate.

  • Food Equality Initiative

  • Spokin

  • Elijah-Alavi Foundation

• If you’re in a position to invest in a BIPOC led company, do so! Or, if you know someone who can invest, put them in touch. Just make sure everyone actually wants to follow through before beginning the process.

• Don’t have investor-type money? Use the power of your purchase! Buy Partake Foods at your grocery store or online, or check out Alerje. Keep your eyes open for more products that fit your needs.

• Are you a medical professional? See if you can volunteer at local health centers to provide food allergy education or support.

• Want to get more involved in an organization that supports the BIPOC community? Do your research. Check out organizations and make sure what you have to offer truly aligns with that organization. If it’s a match, reach out and offer your talent.

Other Information

• Click here for information from the American Academy of Pediatrics on the impact of racism on a child and adolescent health.

• Click here to watch the webinar replay.

Panelists

• Dr. ​​​​​​​​​​​​​​Lakiea Wright (Board certified Allergist US Medical Director ImmunoDiagnostics-Clinical Affairs ThermoFisher Scientific),

• Javier Evelyn (Founder and CEO of Alerje, noted as Crain's 40 Under 40, and founding team member at MedTech Color),

• Denise Woodard (Founder and CEO of Partake Foods),

• Thomas Silvera (President at Elijah-Alavi Foundation Inc.),

• Dina Silvera (mental health advocate and executive creative director at G.A.M.E.), and

• Emily Brown (Founder and CEO of Food Equality Initiative)

Moderators

• Karen Palmer (food allergy advocate, Certified Professional Coach and Operations Consultant and food allergy parent) and

• Linsey Davis (two-time Emmy Award winning correspondent for ABC News and successful children’s book author)

Leave a comment below to let us know if you have any suggestions about how to best support the BIPOC food allergy community!

Allergy-Friendly Chocolate Chip Cookie Recipe

Black bean cookies for the win!

Get ready to be wowed! This cookie recipe was made especially for us by Chef Jessica over at Maui Personal Chef. I have to admit, I was a little skeptical when I found out about the secret ingredient…black beans!? After sampling many meals made by Chef Jessica, I wholly trust her, so I dove right in.

After reading the recipe, I was stoked to see that the cookies were easy to make - throw everything in a food processor or blender, then just stick the batter on a cookie sheet and pop into the oven. I mean, how simple is that?! When recipes have multiple steps or seem overly complicated, I usually need to give myself a pep-talk first. I’m glad to report that did not happen here! This recipe was more of a confidence builder. Yaaas!

The next (and most important) factor was that when my kiddos tasted the cookies, they had no idea about the beans or lack of the refined sugars you usually find in cookies…AND they wanted more! These are cookies I would make again and again. It feels good to be able to offer my family a healthier alternative to the typical cookie.

So, without further adieu, here’s the recipe:

• 1/2 cup cooked black beans

• 1/2 cup sunflower seed butter

• 1/3 cup maple syrup

• 1 tbsp. ground flax seed

• 1 tbsp. vanilla extract

• 1/2 cup allergy-friendly mini chocolate chips

• Coarse sea salt

Preheat the oven to 350 degrees. Blend all ingredients except chocolate chips and salt in a food processor or blender. Then stir in chocolate chips and form into small balls. Place balls on parchment-lined baking sheet. Sprinkle with coarse sea salt on top and bake at 350 degrees for 15 minutes. Remove from oven and let cool on the pan for 10 minutes before eating. Enjoy!

Comment below to let me know how the cookies turned out for you!