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| 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.
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| 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.
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| 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.
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| 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.
