A Window Into Oral Immunotherapy

Oral immunotherapy is still a relatively new “thing” in the food allergy world. To my knowledge, there are only two practices in Kansas City that offer this option. Oral immunotherapy (OIT) is a method of inducing your immune system to tolerate a food that it currently reacts to. It involves reintroducing the allergenic food to your system in gradually increasing amounts, with the goal of allowing you to eventually have exposure to the food without experiencing a reaction. 

I’m going to preface this blog post by saying that oral immunotherapy is not for everyone (and likely not possible for everyone). It has its pluses and minuses, and it’s not perfected (yet). My goal is simply to give you a window into what it’s like from the parent/family perspective, as that’s often what’s missing after a conversation with your provider.

Three weeks ago we started oral immunotherapy with our daughter for her peanut allergy after she failed an oral food challenge. Once she’s well established with that, we’ll start OIT for her pecan/walnut allergy as well. Our goal with all of this is simple: to arm her with everything we can to keep her safe (separate from just emergency medications), AND allow her to have as normal of a childhood experience as possible. If we’re being honest about it, food allergies can have a strong effect on the social side of life. If you’re afraid of going to a sleepover because you don’t know what food will be served, or can’t attend a birthday party because you’re allergic to shellfish and it’s at a seafood restaurant, it can hinder you from experiences.  And we want her to have those experiences. I’m not saying food allergy parents that choose not to undergo OIT don’t want their kids to have those experiences by any means, for some families it’s not a viable option (insurance coverage, too many allergies that can’t be desensitized, child refusal, etc.)

Not all allergens are possible with OIT yet, but luckily, nuts are pretty common practice. So here’s our journey and what it looks like:

It all starts at the allergist’s office:

DAY 1:

-       calm, quiet activities 30 minutes prior to dose

-       small dose of peanut flour is given, she’s watched for 1 hour at the office

-       we leave, and she’s monitored for 1 more hour

During OIT, it’s important that the patient do calm, quiet activities to keep from elevating the core body temperature or getting the immune system worked up. They’re also not allowed to sleep. It’s recommended that the patient take vitamin D and probiotics to support the gut and immune health. Depending on the severity of the allergen, the starting dose/how it’s administered orally may vary.

NEXT 2 WEEKS:

-       this same dose is given everyday, within a two hour window (with the same rules)

-       if the patient experiences symptoms, the dose may be extended for another week +

Typically after this two-week period, you go back to the allergist for an “up dose” and raise the amount of allergen administered orally so the immune system starts to build up a tolerance. Then you repeat the two weeks at home. In our experience, OIT will probably last 33 weeks for her peanut allergy. Depending on your allergy and how OIT is tolerated, the process could be shorter or longer.

So does this sound like a lot of effort? A bit. It’s about a 2.5-hour commitment everyday, with observations, supplements and trips to the doctor every two weeks. In my opinion is it worth it? Absolutely. Of course there are risks, for example she had a few hives after a dose last week and we had to administer Benadryl (not ideal). But for our family, the long-term reward outweighs the risk. Within one year she will be able to eat a few peanuts everyday, and not worry as much at restaurants. Someday restaurants may not be few and far between for her, but a regular outing. And who knows, her immune system may start to recognize peanuts as a friend instead of the enemy now that she’s eating them everyday—she may just outgrow the allergy.

Happy to discuss my experiences with anyone out there, and please share your own if you are going through OIT as well!

Until next time,

Meg

Allergen-friendly Easy Dinner Recipes

Here are the recipes that we made on Kansas City Live Friday morning! With easy substitution, both of these recipes can be made "top eight" and gluten free! Enjoy! 

Asian Black Bean Burgers

Recipe adapted from The Lean Green Bean

Ingredients:

1.5 cups black beans, cooked

¾ cup quinoa, cooked

2 tbsp peanut butter OR your favorite nut butter alternative

2 tbsp Thai chili sauce

2 tsp sriracha

2 cloves garlic, crushed or minced

1-2 tsp of fresh ginger, grated OR ¾ tsp ground ginger

½ cup carrots, shredded (blot with paper towel to soak up excess water)

¼ cup gluten free oat flour OR breadcrumbs if not gluten free/diet allows

Optional sauce:

Mix 1/3-cup plain Greek yogurt (or coconut yogurt if dairy-free) with 2 tbsp Thai chili sauce.

Instructions:

1-   Add black beans to a bowl and smash with a potato masher or fork.

2-   Add remaining ingredients and mix well.

3-   Form mixture into 4-6 patties and place on greased baking sheet.

4-   Bake 400 degrees for 20 minutes, flipping halfway through.

5-   Top with yogurt sauce before serving if desired.

Easy Chicken Fajitas

Recipe adapted from The Food Network

Ingredients:

2 large bell peppers, sliced (consider one red and one green, but any work)

½ medium sized white or yellow onion, sliced

2-3 uncooked chicken breasts OR 4 uncooked chicken thighs cut into strips

1 can of Rotel, liquid drained (hotness based on personal preference)

3 tbsp extra virgin olive oil

1 tsp cumin

1 tsp chili powder

Instructions:

1-   In a medium sized bowl mix the olive oil, cumin and chili powder.

2-   Add the raw chicken to this bowl and mix until thoroughly coated.

3-   Spread the chicken mixture out in a medium sized baking dish.

4-   Spread the onion and the bell peppers on top.

5-   Top with the Rotel and bake at 400 degrees for 20-25 minutes.

Optional Add-ons:

If diet allows, feel free to include tortillas or shredded cheddar cheese (or vegan cheese alternative), but not necessary.

 

Posted on June 9, 2016 and filed under Culinary Creations.

Food Allergy Awareness Week! Things I’d Like People To Know… and a Little Dr. Seuss.

So it’s officially here, food allergy awareness week 2016. I’m currently sitting in my office looking outside the window to my front yard, where I’ve placed a large food allergy awareness poster for everyone in the neighborhood to see.

As you all know, I am a food allergy family. And it was confirmed to still be the case last week at our allergist’s office when my daughter had a reaction to 1/3 of a peanut during an oral food challenge.

One of the greatest things about food allergy awareness week is it gets the conversations going about food allergies. I LOVE that statistics are being shared left and right to paint the picture of how many people are affected (15 million Americans, 1 in 13 children, etc.) Heck, even the Empire State Building was lit up teal last night in honor of this week!

It’s important that the conversation not just be about how MANY people are affected, but HOW they are affected. So in the spirit of awareness and conversation, here are some things I hope others learn/understand about food allergies beyond just the numbers:

1. It’s not a choice. We don’t know why our family has food allergies, and it’s something we have to manage diligently everyday. Don’t feel sorry for us, help advocate for us!

2. Food allergies can be life threatening and they’re a serious health issue, not simply an inconvenience—trace amounts of a food allergy protein can be deadly (not just via ingestion but also via skin contact and inhalation).

3. Food allergies require planning. We can’t be as spur of the moment, so outings with food allergy friends are easiest if planned ahead.

4. If we ask questions about your food multiple times it’s not because we don’t trust you, it’s just because there’s no room for error. It’s not personal; we have to do it to ensure safety. So we will likely ask to check every label.

5. Food allergies can be draining- mentally, emotionally and financially. We can’t let our guard down and our vigilance level is always in “on” mode. We want to experience the same events and activities as everyone else, but it’s not always easy to do so.

6. We’re not germ freaks if we ask you to wash your hands when you come into our house or after eating, or if you see us wiping down an airplane seat with disinfectant wipes. It’s simply that we are trying to keep allergen exposure (risk) to a minimum.

7. Activities don’t have to involve food to be fun. Wouldn’t you rather enjoy the people you love than the food? I’d rather omit something for my child’s friend so that he can be safely included in her birthday than have him not there at all.

8. Always feel free to ask questions. We will never get annoyed if you ask us a million questions about our allergies, we’d rather you want to understand than not ask!

9. We’re just parents doing what we have to do to keep our kids safe. Please realize we’re not trying to inconvenience you, and that we’d do the same for your child.

10. It helps to have a village and not feel like you’re isolated on an island—try your best to be their advocate to help them stay safe. And if you are part of someone’s village, God bless you. It’s not an easy task and you’re a very special person:) 

Lastly, I leave you with some words by Dr. Seuss. Horton Hears a Who seems so appropriate during food allergy awareness week:)   

Don’t give up! I believe in you all! A person’s a person, no matter how small! And you very small persons will not have to die if you make yourselves heard! So come on, now, and TRY!

The mayor grabbed a tom-tom. He started to smack it. And, all over Who-ville, they whooped up a racket. They rattled tin kettles! They beat on brass pans, on garbage pail tops and old cranberry cans! They blew on bazookas and blasted great toots on clarinets, oom-pahs and boom-pahs and flutes! Great gusts of loud racket rang high through the air. They rattled and shook the whole sky!

When they got to the top, the lad cleared his throat and he shouted out, “Yopp!” And that Yopp... That one small extra Yopp put it over! Finally, at last! From that speck on that clover their voices were heard! They rang out clear and clean. And the elephant smiled. Do you see what I mean?... They’ve proved they ARE persons, no matter how small. And their whole world was saved by the Smallest of ALL. 

Until next time,

Meg

 

 

 

What to Expect When You're Expecting... An Oral Food Challenge

This is a pretty fresh topic in my head as our daughter had an oral food challenge last week. If you’re not familiar, or haven’t experienced one yet, an oral food challenge (OFC) is essentially a food trial to a potential allergen. An OFC is usually held at your doctor’s office over a few hour period. In our experience, the doctor divides the potential allergen into several doses, titrating the amount up by double every 15 minutes or so until a full serving is reached. For reference, an OFC is really the only definitive way to know if a food allergy is really a true food allergy (if no definitive diagnosis is made after a skin prick or blood test). Once the full serving size is met, the doctor will typically observe for a couple hours to ensure no signs of a reaction occur. However, if symptoms start to occur at any point in an oral food challenge, the challenge is stopped and the symptoms are treated immediately.

So let’s talk about the “what to expect” part. It can be a long day. And it can be a bit nerve wracking. But being prepared and understanding the purpose/procedure is so important. So in the spirit of getting all your ducks in a row (weak post-Easter joke, I know), I’ve compiled a list of things to prepare in order to be ready for the challenge once you get there.

Ask your doctor what he/she needs you to bring. He may have you bring the food for the challenge or his office may provide the food (we’ve done both). Make sure if you’re bringing the food allergen in question that you’ve done your homework to ensure it’s not processed in a shared facility/shared line with something else you’re allergic to. For example, when we challenged hummus with my daughter we ensured the hummus we brought wasn’t processed in a shared facility with nuts, her other allergen. We didn’t want cross contact risk even playing a factor.

Bring lots of activities for entertainment. If it’s for a child, I’ve found new toys/books and games always help because it holds attention longer. Having a favorite stuffed “friend” or their favorite soother is helpful too. But if you’re an adult, a good book and your favorite digital gadgets will probably suffice:) 

Bring safe snacks. If the challenge goes well, you may be there for several hours (and the tiny doses of food the doctor gives you likely won’t fill you up). We like to bring some of my daughter’s favorite snacks that are tried and true and we know are safe for her (another place you want to avoid bringing cross contact into the equation)! It’s an added bonus if you can bring foods that are free from the most common allergens (peanuts, tree nuts, fish, shellfish, wheat, egg, milk and soy). We figure it’s an allergist’s office so there are likely lots of other patients that sit in the same office with those allergies. On the same note, I bring disinfectant wipes in case the food spills so that I can clean it up properly for the next allergic patient. 

Bring your emergency medications. This may seem silly at first (hello, you’re at your allergists office)! but it’s so important. There’s always a small chance of a delayed reaction and if that happens on the way home, you want to have your epi pen and antihistamine at the ready.

Leave the siblings at home. If the food challenge is for your child, it’s best to leave their best buddy at home. Although it may be hard to find childcare for the better part of the day, it’s important to focus on why you’re there. Best case, you don’t have a reaction and it’s quality time with your babe. Worst case if a reaction does occur, you need to be able to focus on your child and follow the doctor’s protocol. And if you’re an adult, bring someone with you. That way if a reaction does occur you have someone by your side (for comfort and helping you get home)!

Set a course of action/next steps. Once the challenge is completed, make sure you talk to the doctor about next steps. If the challenge went great, what do you do about exposure moving forward? If it didn’t, is further testing/follow up required?

Hope these tips are helpful folks, I will say after we experienced one food challenge I felt so must better equipped for take on the second. Hopefully this will help you to be fully prepared for your first, if you haven’t learned the ropes yet.

Until next time,

Meg

 

 

Posted on March 29, 2016 and filed under Oral Food Challenge.

The Importance of Finding the Right Provider

Finding the right provider to manage your food allergies (in my mind at least) is a close equivalent to making sure you’re in the right relationship. Many times food allergies can be a long journey, and a certain level of trust is required to feel as if the match is a good one.

Part of the reason I felt compelled to write this blog post is because we feel very lucky to have found a great provider for our food-allergic child. He has a great bedside manner with our little one, brings scientific data/studies to the table when appropriate, and challenges us to think about approaches we may take for her long-term benefit. And we really, really trust him.

I think we’ve all been there, started seeing a provider simply because they were referred by someone else who likes them and they happen to accept our insurance. And sometimes this works out great! Though other times not so much.

In the spirit of helping you find an allergist (or other specialist as appropriate) to help you manage your food-based issues, I’ve created a short list of things to consider when deciding if a provider is right for you/your family:

1)   Do you feel their approach/style meshes well with your personality?

Whether you’re dating or seeing your doctor, chemistry is important!

2)   Do you feel they take an appropriate amount of time to understand your full picture?

Ensuring they have all the facts to help you on your journey is imperative. So not only do you have to pull your weight and share all relevant information, they’ve got to consider all sides.

3)   Do they provide clear answers that help you to better manage your allergies outside of their clinic?

Feeling like you have the confidence to manage your allergies once outside of your doctor’s office is important. And if you’d benefit from an additional layer of support, you can always call me at Food Allergy Partners:)

4)   Do they recommend a level of testing that you feel comfortable with?

Do you feel “analysis paralysis” so to speak or do you feel not enough digging has been done to get to the root of your issues? It’s important to work closely with your doctor to achieve the goals set out, while also meeting your comfort zone.

5)   Do they seem to be engaged within their industry? Example: boned up on the latest clinical data, attending conferences to continually refine their craft, etc.

Ensuring your provider continually engages in their specialty is important. I personally love knowing that our doctor is all over the newest must-read clinical study!

6)   Do you trust them?

Heard me say this a few times? Well, it’s a big one. Food allergy management can sometimes be a long road, and it’s important you trust the provider that’s walking the road with you. This road may involve allergic reactions, food challenges and more, so you’ve got to trust this “relationship" you’re in.

Let me know if you’d like to add any criteria to this list, as I’m sure there are lots more things that would be great to mention!

Until next time,

Me