Sunday, March 17, 2019

Redeemed

"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." Genesis 50:20 (NIV)

Nearly four years ago, Brendan and I walked into a doctor's office and sat for a consultation that would change our lives. That day, as we heard Dr. Silvers offer us more than just an Epipen refill and advice on strict avoidance of our allergens, our family was filled with hope that a treatment called oral immunotherapy (OIT) could help Brendan defeat his food allergies.

Brendan in front of the wall of OIT grads, hopeful to be added one day.

Of course, our food allergy story began about 10 years before our first meeting with Dr. Silvers. Brendan developed hives and vomiting after eating his first piece of pasta. The beginning of Brendan's food allergy journey was fraught with anaphylaxis and fear. Food allergy life sucks, and with a kiddo allergic to wheat, barley, rye, eggs, peanuts, and tree nuts, we were neck-deep in the suck-tastic-ness of it all. "What exactly DO you fed him?" well-meaning friends and acquaintances would ask. It wasn't easy. And it was nearly always stressful. Yet we soldiered on, giving him as much freedom as we could while still trying to keep him safe from foods that surrounded him on a daily basis.

One day when Brendan was a preschooler, I was praying that his food allergies would be taken away, and God placed a picture in my mind. He doesn't do that too often, so when it happens, I pay attention. It was a picture of Brendan shackled in chains. As he grew, Brendan threw off the chains. That picture left me puzzled. If Brendan were to outgrow his allergies, it would be a passive act-- something that would just happen to him. But in this picture, I clearly saw Brendan actively shedding the chains of his food allergies. How could that be?

I'd like to say that picture from God made immediate sense upon meeting Dr. Silvers that day four years ago, but in honesty, I didn't connect the dots until Brendan graduated from OIT. Upon his graduation, I remembered that prayer many years ago, and it was clear. Brendan actively fought his food allergies. And he fought hard. OIT wasn't always smooth for him, but he threw off the chains of his food allergies, and he hasn't looked back since!

Final victory from his food allergies in front of that same wall of grads!

So, when it comes to this God stuff, I'm definitely a little bit slow. It was a few months ago, when a friend from our old church, commenting about Brendan and OIT, mentioned, "Yours is one of my favorite redemption stories." I honestly had never thought of OIT as a story of redemption for us, but the moment she said it, it all clicked together. God is definitely in the redemption business (See: "Jesus saves us all from our sins," as example number one). And that's exactly what He's done here.

Brendan's free from his food allergies now, and that's awesome. But do you want to know what else is awesome? Where the amazing-ness of God's redemption comes into play here?

So many people have seen, heard, or read Brendan's story and gotten treatment for their own kids: REDEEMED.
These two make for some pretty good TV.

Brendan sometimes texts and talks with kiddos who are in treatment with OIT, helping to calm their fears: REDEEMED.

I'm lucky enough to work for Dr. Silvers now, helping food allergy families just like ours through the same treatment that changed our lives: REDEEMED.
Food allergy kiddos are the cutest people on the planet.
I love eating peanuts with these adorable patients!

I've been so changed by this experience that I'll begin PA school this summer, because I want to to be on the front lines, helping change others' lives, too: REDEEMED.

And so, I can't help but think back to that old bible story of Joseph, meeting his starving brothers years after they threw him in a pit and sold him to Egypt as a slave,"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives."

Our food allergy story started out full of trials and fear, but it certainly didn't end that way. God has used our story to save lives. He's taken something harmful and made it help, not just Brendan, but so many others, as well. We may have begun our story shackled by the chains of food allergy, but we're just getting started on the ending-- an ending that will see countless food allergy families REDEEMED.


Sunday, February 17, 2019

CURED

Yeah, I just used that word. CURED. I never dreamed we would get here. And yet three and a half years after we began our OIT journey, here we are. After nearly three years in maintenance for egg OIT, eating an egg every single day,  Brendan avoided egg for thirty days. No dosing. No deviled eggs. No donuts. Then he walked in to Dr. Silvers' office on September 25th and ate an egg LIKE A BOSS. Actually, it was much less dramatic than that-- he ate an egg in a graded food challenge over the course of about four hours, LIKE A BOSS. We brought donuts for the staff and celebrated with Dr. Silvers.

LIKE. A. BOSS.

The shirt says it all.

I don't toss around the word CURED very often. When telling others about OIT, I always mention that daily dosing will happen for years, possibly decades. I tell folks that their kiddo will be desensitized, not CURED. I never want to set the expectation that OIT CURES kids. Until one day it does, and the kid it CURES happens to be your own.

So, I've been throwing that word around like confetti. Brendan is CURED from his egg allergy. He only has to dose two or three times a week. He gets to pick the days. Every morning I get to ask him if he *wants* an egg. He's loving the freedom to be able to choose. Plus, he still gets to eat whatever he wants, whenever he wants it. No more food allergy life for this kid.

I threw the CURED word in Dr. Silvers' direction that afternoon, too, along with a hug and a few tears. Thanks for CURING my boy, Dr. Silvers. When other allergists sent us home with an Epi script and told us to avoid, you sent us home with a bottle of egg white solution. When others drew yearly labs that always seemed to increase, you faced our allergies head-on, and thanks to the science of desensitization, willed those numbers down. When others gave us hopelessness and sent us home in tears, you gave us hope AND tears-- tears of joy and relief.
Celebration time.
The guy on the left will tell you the kid on the right did all the hard work.
He's only partly lying.

So that's it. My kid is CURED from his egg allergy. He passed his hazelnut challenge, too, for those of you who are wondering, and only has to dose that one two or three times a week, too, but that's a story for another day. OIT has been a complete miracle in our lives. I can't sing its praises enough, and I will continue to talk about it to just about anyone who will listen. True Story.

So, if you're sitting out there with a list of food allergens, living the life of strict avoidance and trying to decide if OIT is worth it, just read this post one more time. In the end, OIT may not CURE your kid, but it will more than likely bring your kid FREEDOM. And who knows, maybe three and half years from now, you'll be throwing that CURED word around like confetti. Because OIT works. And TREATMENT or CURE, it can work on your kid, too.
Fall of 2017. Treated.

Fall of 2018. CURED.

Wednesday, August 22, 2018

SU: Sustained Unresponsiveness

If you read enough OIT studies, you'll find these two little letters buried in many clinical trials: SU, Sustained Unresponsiveness. It's about as good as it gets with OIT. It means your kid can stop dosing his allergen for an extended period of time and still not be allergic.

Let's back up a little and explain what OIT is and what it isn't. OIT, oral immunotherapy, IS a TREATMENT. It's a desensitization process. You start with teeny amounts of the allergen and build up to large amounts over time, tricking your body into thinking that it's not allergic. In order to maintain your desensitization, you have to continually expose your body to the allergen. So, that's why for the past several years, Brendan has eaten egg, peanut, and hazelnut EVERY. SINGLE. DAY. He has to continually remind his body that it's not allergic. OIT ISN'T a cure. We'd all LOVE to have a "cure" for food allergies. Perhaps a magic pill you could take once that would make your allergies disappear. Unfortunately, that doesn't exist. OIT isn't a "cure" because in most cases you have to eat your allergen daily to maintain your desensitization.

But what if there was some "in between state?" Somewhere between a daily treatment and an all-out cure? Well, that's what sustained unresponsiveness is. If you can go a while-- like an entire month without eating your allergens-- and then you can eat a full serving without a problem, then you've achieved sustained unresponsiveness.

So, why am I explaining all of this on a blog about my sweet boy who completed OIT a few years ago?! Because Dr. Silvers thinks Brendan may have achieved sustained unresponsiveness to both egg and hazelnut! So what's the big deal with sustained unresponsiveness? Well, if Brendan really HAS gotten there, he would be able to reduce his dosing to about three times a week instead of every day. That would be HUGE for him!
Here's Brendan chowing down on a cupcake
on his birthday at camp this Summer.
No big deal, thanks to OIT!


It's hard to imagine that Brendan may be there with these two allergens. Here's how it's all shaken down: Before OIT, Brendan had a history of anaphylaxis to the slightest amount of egg. A single candy, with egg white as the second to last ingredient, had us using the Epi and spending the night in the hospital. He also couldn't tolerate egg in baked goods. He *almost* passed a baked egg challenge when he was 7, with just a tummy ache in the parking lot of the allergist's office. But after we tried to add baked goods into his diet, he would vomit them-- there were the brownies at the neighbor's house that didn't stay down and the roll at the luau in Hawaii that came back up before the show even started. So, Brendan couldn't tolerate any egg before we started OIT. His egg IgE was 52. His ovomucoid, which shows an allergy to the more heat stable protein in egg and often indicates a more severe, prolonged egg allergy was 18.4. Fast forward to his blood work we just got back today, and his egg white IgE is 3.93, a reduction of more than 90%! His ovomucoid has come down similarly to 1.95. Last year at his check up, his skin test for egg was negative, too. Add this to the fact that Brendan hasn't had a reaction to a dose in a LONG time-- almost two years at this point, and Dr. Silvers thinks Brendan may have made it to sustained unresponsiveness!

Ahh, the numbers.
Brendan has always had lots of false positives on allergy testing.
Look at his egg numbers now!
They just look like another false positive. AMAZING!

But what about the hazelnut?! Well, that one's a different, more complicated story. His hazelnut IgE has actually gone UP from last year. Yeah, not by a ton, but it has gone up. The key with the hazelnut is his component testing. Back when Brendan started hazelnut OIT several years ago, component testing for hazelnut was only done in research settings. Not too long after he started, it became commercially available. Allergy testing is tricky. There can be LOTS of false positives. Brendan had never ingested hazelnut before OIT, so we weren't 100% sure he had a hazelnut allergy. Component testing can help clear up the numbers a bit, but of course, it wasn't available to us when we were making the decision to try OIT. So, we played a numbers game. Brendan's hazelnut IgE was high enough that studies had found that he had a 95% chance of having a true hazelnut allergy. Dr. Silvers felt that putting him through an in office food challenge for a food he'd most likely fail wasn't a great idea, and we agreed. After all, we were doing OIT for peanut at the same time anyways, and that one WAS a real allergy-- we knew for sure thanks to peanut component testing! So, we threw hazelnut in Brendan's OIT mix, with a 95% chance he was allergic.

Still a little voice in my head always wondered. What if he was in that 5%? What if he didn't have a hazelnut allergy? So this time, I asked if we could test Brendan's hazelnut components to see if he was allergic to the "bad" components of hazelnut that cause systemic reactions or if he was just allergic to the component that might cause a slightly itchy mouth when he ate hazelnuts, but was unlikely to cause anaphylaxis. Now, these results would be tricky, because even if he tested negative to the "bad' proteins in hazelnut, we will never really know if he *was* allergic before OIT, and OIT worked and reduced his numbers, OR if his "bad" protein numbers were always low. We got the results today, and I was completely surprised. It turns out that he's allergic to the protein that may cause an itchy mouth when he eats hazelnut, but the other "bad" components are almost negative! Did he never really have a hazelnut allergy, or did OIT just work on him, reducing the levels of the "bad" components while his "itchy mouth" component (which is really related to being allergic to birch trees) has increased? We'll never know. What we do know is that those "bad" proteins are low enough that Dr. Silvers thinks he may have achieved sustained unresponsiveness to hazelnut, too!
So for hazelnut components, Cor a1 is indicative of a cross reaction with birch pollen.
That means Brendan has a birch pollen allergy,
and the proteins for the pollen allergy look enough like
this specific hazelnut protein to come back positive on a test.

So, how do we "test" for sustained unresponsiveness?! Well, it's fairly straight forward. Brendan has to stop dosing egg and hazelnut for 30 days. He also has to stop eating foods that contain egg and hazelnut during those 30 days. Bye bye donuts and Nutella. It's gonna be a tough life for 30 days. I know we lived like this for 11 YEARS before OIT, but once you've been free, it's SO hard to go back to food prison!! But we're willing to put ourselves in food jail for 30 days if that means he can reduce his dosing to just a few times a week.
No donuts for this boy for 30 days. Can he do it?!!
It's not going to be easy!

After our 30 days of food prison, we go in for food challenges, first to egg and then to hazelnut. Brendan will spend four hours (per food!) eating small, but increasing amounts of egg (or hazelnut) until he eats a full serving of each. If he can eat a full serving, he's done it! He's achieved sustained unresponsiveness and will be able to dose just a few times a week! If he has a reaction, we'll back up a bit from where he reacted, and he'll go home taking that dose daily. We'll slowly increase that dose, just like we did with OIT until he's back to eating his maintenance dose, and he'll have to eat that everyday for years until Dr. Silvers thinks he's ready to try for sustained unresponsiveness again. We're, of course, hoping for the former outcome!

So what about peanuts? Poor peanuts. Brendan's peanut IgE has dropped to less than 40% of what it was before OIT, but it's still not low enough to think about sustained unresponsiveness. Maybe we'll get there with peanut before he goes off to college. Maybe we'll never get there. Either way, he'll happily eat his peanuts every day until Dr. Silvers thinks he's ready to try for sustained unresponsiveness.
Poor peanut. Unfortunately, Ara h2 is the peanut protein most often
associated with severe, systemic allergic reactions.
Brendan's not quite ready to test for sustained unresponsiveness to peanuts.

So what is sustained responsiveness? It's the hope that this TREATMENT of OIT can turn into a CURE of sorts. I remember sitting in Dr. Silvers' office nearly three and a half years ago, hearing about the hope of OIT for my sweet boy for the first time. In a few short weeks, we'll be back with Dr. Silvers again, this time with more hope than we could have ever imagined. So, we're headed back to food avoidance once more, all for the hope of even greater food FREEDOM.

Wednesday, July 25, 2018

Top Ten Questions to Ask at an OIT Consult

With more and more doctors jumping on board to offer OIT, patients can often choose between several OIT doctors in their area. What a difference a few years has made in the availability of OIT! I'm not bitter about all the choices around here now or anything ;)! Actually, I'm NOT, because my kiddo has been completely FREE for about a year and a half now, and that was worth every drive and flight we made for OIT!

So we pretty much just lucked into this guy as our OIT allergist.
There was one office in Texas providing OIT when we started, and there were three doctors there.
Dr. Silvers happened to have the shortest wait list at the time! 

With all these choices now, I usually recommend scheduling a consult with a couple of OIT docs and making the decision about who to use for treatment from there. But what should you ask these doctors at your consult to help you make your decision about who to choose for treatment?

Never fear. I've listed 10 questions below that everyone should ask at an OIT consult!

1) What is your experience and training in OIT? Some doctors have been offering OIT for years while others may only have a few months' experience under their belts. You may end up really clicking with a doc with less experience than another, but it's good to know where each doctor is coming from experience-wise.

2) What made you decide to offer OIT? I like this question because it allows you a glimpse into the heart of your potential OIT provider. A good one will mention changing kiddos' lives and talk about how it's one of the most rewarding things they've done in their career.

3) How often does a patient dose (daily or twice a day) and how often are dose increases (weekly or biweekly)? Also, how long does it typically take a patient to reach graduation? OK, so that was like three questions, so I'm cheating a bit on my top ten list! They are three important questions, though, that will help you know what your schedule will be like over the next few months. Dosing twice daily can really put a cramp into a family's style (especially due to the rest period that accompanies each dosing time), so looking for a provider who offers once a day dosing, might be a big win for a busy family. Likewise, frequency of updosing can often make a difference in how fast you complete the program. Some families want to be done as quickly as possible, while others prefer to take it slower. It's important to note that most doctors will allow you to move at a slower updose schedule, but they won't allow you to go more quickly. So, if you see a doctor who allows weekly updoses, then it's likely he or she will also allow biweekly updoses, BUT, if you see a doctor who allows biweekly updoses, it's unlikely that he or she will allow you to move faster and updose weekly.

4) Do you offer multi-allergen OIT? This one is important for many kiddos who have more than one allergen. Doctors who offer multi-allergen OIT can often knock out two or three allergens in one round of OIT, saving you time, money, and hassle. Some people, however, prefer that their child tackle allergens one at a time, so finding a doctor who offers multiple allergen OIT may not be important to them. Once again, it's important to note that a doctor who offers multiple allergen OIT will often allow patients to tackle one allergen at a time, if they desire, but a doctor who does not offer multi-allergen OIT, will not allow patients to combine allergens.

Brendan was able to do peanut and hazelnut OIT together, saving us at least 20 trips to the allergist!

5) How do you decide which foods need OIT and which may be added to the diet from a food challenge? The majority of multiple food allergy kiddos are actually avoiding some foods that aren't truly allergens. A lot of this avoidance comes from the old advice that if you're allergic to peanuts, you should avoid ALL tree nuts, too, just for good measure. Some of the avoidance comes from kiddos who simply test "positive" to pretty much everything on allergy tests (Brendan falls into this category). Your food allergy kid throws up once after eating a banana, and the next thing you know, you're in the allergist's office, and lo and behold, he tests positive to bananas. Well, now your kid is banana allergic-- or is he?! A great OIT allergist will look at a combination of your allergen testing and history and decide which foods your kiddo may have a good chance of passing via an oral food challenge. This step is important in OIT because you don't want to spend the time, money, and hassle that comes along with OIT if you don't have to. A good OIT allergist will suggest challenging foods with low positive test results and weak reaction history.

Check out these hot mess allergy results that Dr. Silvers had to make sense of.
Brendan ended up with true allergies to only egg, peanut, and hazelnut!


6) Do you offer OIT for all of my kiddo's allergens? Some kids are straight-forward peanut-only food allergy kiddos. They can be treated by pretty much any OIT allergist. Others have multiple food allergies-- some even outside the top eight allergens-- that make their cases a bit more complex. Some allergists only offer peanut OIT, others only do OIT for several of the top eight allergens. Some more experienced OIT allergists can write protocols for your child's allergens. Got a lentil or coconut allergy? You're probably going to need to see an allergist who has a ton of experience and can write protocols. Peanut only? You're golden with just about everybody.

7) What is your on-call service like? This one is HUGE. During OIT, you should have access to an on-call provider 24 hours a day, 7 days a week. You WILL need to contact your doctor after office hours at some point. If a doctor does not have some type of on call service, it's a HARD NO from me. You should be just as picky. Also, all on call services are not created equal. There's traditional call services where you call the office, it rings over to a call service, and you leave your information with the call service so that they can page the doctor and have him or her call you back. This kind of call service is adequate, but some OIT doctors go above and beyond and offer texting programs or their own cell number to their patients. Dr. Silvers uses a HIPAA compliant texting app called Spruce that is a God-send. We text him, and he usually responds back within seconds. It's WAY easier than a traditional call system for everyone involved. The bottom line here is make sure that there's some way to get a hold of your doctor (or another provider in the office) after hours. If there's not, find a different doctor.

Ahh, the beauty of the Spruce App.
Have a question? Just text it, and you usually hear back right away.
We are aware that we're spoiled!


8) What does life look like in maintenance? It's important to know the end-game when choosing an OIT provider. Does the doctor plan to take your child up to an amount of the allergen where free-eating will be possible? Is the goal just to become "bite proof" to the allergen in case of an accidental ingestion? Also note that during maintenance, the 2 hour no exercise period after dosing should still stick around. AND, your child should still be expected to carry Epipens, just in case a reaction happens at some point. If a doctor tells you that you can shed the Epipens as soon as you graduate, I'd be leery. That's unsafe advice. Reactions, although rare, do happen during maintenance, so you need to keep Epipens on hand, even after treatment.

9) What is your plan if a child exhibits symptoms of eosinophilic esophagitis (EoE)? About 5-10% of kiddos in OIT end up with symptoms that may be an indicator of a disease called eosinophilic esophagitis. This condition is caused by the proliferation of a certain kind of while blood cell (eosinophils) in your child's esophagus and can cause nausea, vomiting, and a feeling that food is getting "stuck" in the esophagus, among other symptoms. This condition's development during OIT used to be a deal breaker, but now many OIT doctors can work through these symptoms by reducing the child's dose to a level without symptoms and holding there for several months. Then, the child begins the updosing process again, this time more slowly. It's a good idea to ask the doctor about how he or she handles these cases because some doctors still ask children to quit OIT when these symptoms develop rather than working through them. I'd suggest finding a doctor with experience graduating children who experience these symptoms.

10) So this last one isn't really a question, but it's probably the most important part of this list: CHOOSE THE DOCTOR YOU FEEL THE MOST COMFORTABLE WITH. Yep, after all those questions, it's really that easy. Think about the questions, but in the end, go with your gut. You'll be in close contact with this doctor for the next six months at minimum. You need to choose someone you and your child "click" with. Bedside manner is SO important in OIT. You need someone that both you and your child can trust because both you and your child are going to be asked to do something you've never done before-- something that you'll likely both find terrifying-- ingest those dreaded allergens. It's huge step, and it requires lots of bravery. You want to choose a doctor who will calmly guide you through that process-- one who knows how to hold your hand during the tough times but also knows just when to push you a bit further along in your journey.

So, ask all the questions. Listen to the answers. Think about your choices for a bit. Then go with your gut. You are about to embark on an amazing, life-changing journey, and you've just chosen your guide. Sit back. Take a deep breath. Trust your guide. You're in for quite the ride with the most amazing ending.


Friday, December 29, 2017

Growth

Check out these pictures of Brendan and Dr. Silvers taken 18 months apart.

I just can't even with how much he's grown in 18 months!

 That child has grown like a weed. Dr. Silvers says Brendan's not allowed to catch him. I don't think that will be a problem since we're not exactly gifted in the height department around here ;).

We've all experienced way more than physical growth since this whole OIT journey began, however. Brendan's a teenager now-- going to events with the youth group at church where I have no idea what's going on much less what food they are serving-- buying his lunch at school when he forgets to pack his own-- eating donuts at band events without a second thought. I am so glad we pursued OIT before the teenage years. He's got a level of freedom that wouldn't have been possible pre-OIT. We recently went on a cruise and let the kids roam free, connected to us via walkie-talkies. The boys' favorite activity?! Hitting up the buffet for extra dessert after dinner. It's the little things that add up to one HUGE improvement in Brendan's quality of life.
Desserts, desserts, and more desserts!

His little brother's grown, too, although he's struggling to keep up with Brendan's teenage growth pace. Aidan packs himself a PB&J sandwich for lunch at least once a week these days. He no longer chooses to avoid foods out of fear that he might somehow come in contact with his brother and cause him to react.
Little brother, who doesn't get nearly enough press on this blog,
obviously enjoyed the cruise food, too.

Andrew and I have grown, too, not up, and maybe just a little bit out, if we're being honest with ourselves. I've gone back to school full time to pursue a career I never would have dreamed of taking on before Brendan completed OIT.
My first day of school selfie!

 Brendan's OIT both inspired me to become a physician assistant and freed me up mentally and emotionally to go for it. Before OIT, I needed to be 100% accessible to Brendan-- I attended every class party and always brought the cupcakes-- I went on every field trip and made sure my boy got the right sack lunch. Now, I can actually step out of the helicopter mom role that food allergies forced me into and pursue a dream of my own. And Andrew's been there to support me every step of the way-- growing and learning how to take over roles that were traditionally mom territory in our house.

It's been an amazing year of growth for all of us since Brendan graduated OIT. I knew OIT would have a profound impact on him, but I didn't realize how much it would touch our entire family. I am quite certain it's one of the best decisions we ever made for our family. It's helped us all grow in ways we could have never imagined.
Us.

Saturday, September 23, 2017

Desensitization: It's not just physical

Desensitize. It's a big word that allergists use to describe what's going on in your kid's body during OIT. OIT is flying under the body's radar, teaching it not to freak out when it meets an allergen. But for OIT to be successful, desensitization can't just take place in your kiddo's body-- it's got to happen in the hearts and minds of your entire family. While the mechanics of OIT are purely about physical desensitization, OIT will never fully set you or your child free until you experience an EMOTIONAL desensitization to your kiddo's allergen.

Thank you Gail Reynolds Frank for letting us use this graphic!
I first read the term "emotional desensitization" on the Private Practice OIT Facebook Group.
It's stuck with me ever since as I see families struggling to cope with their new found freedom in OIT.
Let me explain what I mean. When your kid became allergic, his body was sensitized to his allergen-- for whatever reason, his body decided to make antibodies against harmless food: peanuts, eggs, milk, wheat. Those antibodies planted themselves in cells that are just waiting to have an allergic reaction party, and as soon as your kiddo eats his allergen, it binds to those antibodies and the party (or not so much of a party for us) is on. Allergic reaction central.

When your kid became sensitized to that allergen and had a reaction, you became emotionally sensitized to it, too. Can you smell peanut butter from 100 yards away? Do you cringe when you see someone break out a P,B&J for their kid? Are you terrified of your kiddo having another reaction? Are you afraid to Epi if he does? Are you distrusting of chefs at restaurants and labels on food? You are emotionally sensitized to your kiddo's allergen. And during the life of strict avoidance, that's usually a good thing. You're on high alert all the time. You read all the labels. You wipe down all the restaurant booths. You bake all the cupcakes. You are doing what needs to be done to keep your kid safe. You are being a good parent.
Does this picture creep you out?
If so, you're emotionally sensitized to peanuts!
But then you hear about this thing called OIT, and all of a sudden, you start to think that being a good parent just might mean getting this treatment for your kid. But then you are stuck, because you are SO afraid. You have a hard time wrapping your head around giving your kiddo the very thing that you've worked so tirelessly to avoid for so long. And that's exactly when you need to start the EMOTIONAL desensitization process.

How do you emotionally desensitize yourself and your child to their allergen? Much in the same way you physically desensitize: one small step at a time. Below is a list of steps you can take to help you in your emotional desensitization process.

Steps to take emotionally BEFORE you begin OIT:

1) Arm yourself with information. Knowledge is power, and it can help you overcome your fear. Learn what you can about OIT, especially about OIT starting doses. I think some people envision the doctor feeding their child a chunk of peanut on the first day, when in reality, it takes MONTHS to get to that chunk. Your doctor's starting dose wasn't pulled out of thin air-- there are studies about how much of an allergen it takes to elicit an allergic reaction. Read up on one or two of them, and then know that your doctor is starting WAY lower than the amounts in those studies.
This is one of my favorite graphics.
OIT starts with MICROgrams of an allergen.
That's REALLY, REALLY, TEENY!
2) Join a support group. This one can be a double edged sword. There are some great national OIT support groups, OIT 101 and Private Practice OIT are two of the most popular ones. There are also a slew of local, doctor specific support groups. I admin a support group for Dr. Silvers' patients: Texan Allergy OIT Support Group. Ask questions. Tell them you are afraid-- here's a tidbit-- they were afraid before they started, too. Listen to what more experienced OIT moms have to say. There's one caveat about joining a support group: if you focus too much on people's reactions and side effects to treatment, it can make you more anxious. Just know that people usually post in groups when they need support, and not always when things are going well. Trust what your doctor has to say about reaction rates and scroll on by reaction posts if you need to.
You know your OIT doc is beloved when you
and other patients work together to make him this :).
You can join our Texan Allergy OIT Facebook Group by clicking here.
3) Find an outlet for stress. Maybe it's exercise. Maybe it's mindless TV. Maybe it's a good conversation with Jesus. Do whatever helps you de-stress.

4) Go see a professional. If you've tried all the things above, and you are still paralyzed by fear, then go get some counseling, maybe even some meds. You won't be the first OIT parent on Xanax, and you certainly won't be the last.

Steps to take emotionally DURING* OIT:
*Please consult with your doctor about when it may be appropriate to take the following steps-- the timing will be different for each doctor's comfort level. Some doctors may not want you to try any of these things until after your child graduates OIT, others may let you try them at various stages in the process.

1) Allow your child to TOUCH their dose. I know it's tempting to pick up that little peanut piece and feed it to them, especially if your child has a history of contact reactions, but touching the dose can be very emotionally desensitizing for both you and the child. Ask your doctor when it might be time.


2) Allow your child to sit at the "regular" table at lunch. This slice of normalcy is so healing for kids. They've been excluded for so long. Let them sit with their friends whenever your doctor says they are ready.

3) Allow the allergen back into your home. Let your spouse eat a peanut butter sandwich. You know they've been dying to since your kid was diagnosed.

4) Shed the peanut free classroom. OIT doesn't just free our kiddos, it frees everyone they come in contact with!

5) Allow your child to eat a food made in a facility with their allergen. Many docs allow this freedom for nut allergies at just a few nuts. Be sure to ask your doc when he or she thinks your kiddo will be cleared for cross contamination.
Cross contamination deliciousness!!


Steps to take emotionally AFTER OIT graduation:

1) Go have ice cream at an ice cream shop. Don't even tell them you have allergies. Be a normal person. I know, it's weird.

2) Donuts. Do I even need to say more?!
So this happened ;).

3) Go out to eat. Read the menu. Order whatever you want. You no longer need to be on a first name basis with the manager or chef. It's AMAZING.

4) Go to a "high risk" restaurant like Texas Roadhouse or Five Guys where they serve peanuts in the shell. If you're on a free eating protocol, let your kid eat a few.

5) Let your kid eat at a friend's house without worrying about what's in the food.

6) Attend a potluck. Let your kid eat whatever's there.

7) Fly on a Southwest plane and board like everyone else. Watch in amazement as everyone eats peanuts.
Perhaps the ONLY benefit of having a peanut allergy was pre-boarding with Southwest.
 We are happy to give up our pre-board slip for FREEDOM!!

8) Live a normal life like you did before food allergies. After all, this is the goal of OIT! Enjoy your freedom!!

Just like the physical desensitization during OIT, emotional desensitization doesn't happen overnight. Take your time. Allow yourself room to research and learn about OIT. Schedule a consult with an OIT allergist just to hear what he or she has to say, and then when you're ready, begin OIT. I promise you won't regret the decision. OIT heals: both physically AND emotionally.




Saturday, July 22, 2017

Hidden Peanut: Creative Dosing Ideas

Hidden Peanut. Those words used to strike fear into my heart. Remember when the nation's cumin supply was tainted with peanut flour? Fun times. But now that we've completed OIT, "hidden peanut" is exactly what we're looking for.

The majority of OIT kiddos don't like the taste of their allergens. Is it the body's natural defense against them? Is it psychosomatic because they've been instructed to avoid them for so long? Is it simply because they never developed a "taste" for them? We don't know those answers, but we do know that many kids need to camouflage those peanuts to get them down the hatch. I have listed some "creative" dosing ideas below for those of you who are at the end of your peanut rope, hanging on for dear life, struggling through your kiddo's daily doses. Special thanks goes to members of both Private Practice OIT and Texan Allergy OIT Support Group on Facebook who have shared these ideas over the years (I definitely "stole" a few-- I hope you don't mind!)!

1) Peanut candy. Peanut M&M's. Reese's Pieces. Reese's Peanut Butter Cups. There are many options. You'll have to discuss conversions with your doctor. Remember that the protein content on any item is the ENTIRE amount of protein in the item from ALL PROTEIN SOURCES, so you can't just do a one to one conversion here-- not even for the M&M's.
This is the size peanut M&M bag we buy now. Regularly. It's still mind-blowing.

You've tried all the candies and your kiddo hates them, OR your kiddo can't eat the candies due to tree nut cross contamination, OR your allergist just doesn't like using candy for dosing.  What's a mom to do? Here are some other suggestions:

2) Stick peanuts or peanut pieces into Rolos. This also works with other nuts. I have been able to cram up to three peanuts inside a single Rolo.
The Rolo trick works with hazelnuts, too!

3) Crush up the peanuts and mix them into a small amount* of mint chocolate chip ice cream.  Frozen items often dull tastes, combine that with the strong flavor of mint, and the crunchiness of the chocolate chips, and your kiddo won't even know there are peanuts in there.
We tried this mix-in with peanut flour.  I think peanut pieces work better.

*A note about amounts before we move on: When mixing peanuts or peanut flour into things, use as little "mix in" as possible. Until you get up to a peanut, you can usually mix the dose on top of a single spoon. After that, you can use a small dish and get it all out of the way in just 5 or 6 bites.  There's nothing worse than having your kid give up on a dose part way through! The less volume your kiddo has to consume, the better!

4) Crush up the peanuts and mix them into taco meat. You heard me right. Taco meat. Sweet things often ENHANCE the taste of peanut, savory things can actually mask it. Remember to use only a small amount (see the note above about volume). You don't need an entire taco here, folks.

5) Crush up the peanuts (or use peanut flour or PB2 powder-- ask your doctor for a conversion-- they are each different!) and mix them into small amount of ketchup. Then eat with tater tots or fries.

6) Crush up the peanuts (or use peanut flour or PB2 Powder) and mix them into a smoothie.  People say that banana/strawberry smoothies are the best. Heck, we even mixed egg white powder into a Daily's daiquiri mix once ;)!!  Serve the smoothie in a sealed cup with a straw to keep the peanut smell to a minimum.

Sometimes you're even willing to serve your kid a daiquiri to get the dose in!!
 Sans alcohol, of course. Bonus: You can make yourself a full strength one
so you can get through another day of dosing!

7) Place the peanut or peanut pieces on top of a Frito corn chip and munch away.  The Frito's crunch masks the crunch from the peanut, and the corn chip/salt mask the flavor of the peanut.

8) Place chocolate syrup on the end of a spoon, then add peanut flour or PB2 powder.  Top with a bit of Redi Whip. It's delicious. Also, don't try to fly to your OIT appointment with an open can of Redi Whip.  Ask me how I know.  #TSAtroubles

It's like a little ice cream-less sundae!

9) Freeze banana slices, dip them in chocolate and use the chocolate to "pick up" peanut pieces.  Once again, frozen items mask tastes.

10) Carefully pull apart an Oreo and place peanut flour or peanut pieces inside.  Alternately, you can mix peanut butter (or flavored peanut butter) in with the Oreo frosting.  Close the cookie sandwich and eat!
If you use flour, make sure you press it into the icing.
Otherwise, you'll get a "poof" of peanut flour when you bite down!

11) Mix chocolate peanut butter with a small amount of chocolate pudding to further mask the peanut taste.

12) Dip peanuts into Biscoff cookie butter.

13) Crush up the peanut and mix it into a breakfast taco (keeping volume in mind) with eggs, cheese and crunchy bacon bits. The bacon bits will mask the crunch of the peanuts, and the taco contents hides the taste. Pour a little salsa on there, and your kid won't even know there are peanuts in it. This dosing method is a two-fer for us because Brendan did egg OIT, too!

So there you have it. Our best "hidden peanut" ideas. Do you have a creative dosing idea?  Post it in the comments below!