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.

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.