For many families, getting to a diagnosis of a food allergy can be a tough journey. Many food allergies and related conditions start with mysterious signs and symptoms that mimic other conditions or diseases, which can mean multiple doctor visits for some families to reach a diagnosis. For other families, symptoms can be severe enough to be life-threatening. Severe symptoms, while scary, may make finding a diagnosis simpler or faster, but not always. Regardless of the path you took, a diagnosis is really just the beginning of your journey. Now what?
In this post, we’ll walk you through some suggestions for the next questions to ask your healthcare team. Now that your loved one (or you) has a diagnosis, what are the next steps you need to take to keep life moving forward?
What are our options?
You may have already received this information, but if not this is important. First, almost every food allergy is managed by avoiding the offending food(s). But for some food allergies or related conditions, you may have several options. Aside from avoiding the food, this could involve nutritional support (like from Neocate), therapies to help minimize the risk of allergic reactions, and drugs, like epinephrine. You also may have the option of combining several management options.
Ask the healthcare team 1) what all of your options are and 2) to clearly explain them. Also, if you have several options, make sure to have clear directions when each action is appropriate. A plan of action in case of emergencies and day-to-day management can help lower some anxiety you might be experiencing initially after getting the diagnosis.
What are the potential risks and benefits? What are the pros and cons?
This is a general question to ask for any healthcare advice you receive, but it probably applies best to drugs or therapies. When a doctor needs to prescribe a medication, for instance, he usually has reasons for choosing one medication over another. (For example: maybe they work equally well, but one has fewer side effects.) However, you should ensure it’s a best fit for you or your family member. It’s important to know how much one option will improve a symptom or side effect, and any potential consequences, before you agree to it.
Could this other formula (or medication or therapy) be an option?
You may already have some ideas for managing food allergies based on what you know, or maybe you’ll come across a story in the news, or hear about a new approach from a friend. Don’t be afraid to ask your doctor about things she doesn’t mention to you first!
If there is a particular type of approach (formula, medication, or therapy) that you are interested in, bring information about it in case the doctor hasn’t heard of it. There are so many different options out there, and your doc may or may not be familiar with all of them. You should always feel empowered to speak up when you want to know if an approach is an option for you or your loved one. Your doctor will appreciate your curiosity – it’s a sign that you’re ready to do what it takes to succeed!
Can you clarify this for me, or provide it in writing?
It’s so, so important to make sure you leave medical appointments with clear instructions. Doctors, nurses, and dietitians are all experts, and sometimes can forget to make sure we patients understand them. Don’t be afraid to speak up! Make sure that you completely understand your doctor’s explanations and instructions.
I find it really helps me to take notes during medical appointments. Even though the doctor’s explanation seems clear to me in the exam room, within 5 minutes it’s completely out of my brain! If the doctor is giving you instructions about a new medication or mixing formula, don’t be afraid to write it down and ask them to repeat it. Some medical offices now make it a point to provide you with printed instructions, which can be a huge help.
“If this works, what should I expect to see, and how quickly? How soon will I know if this doesn’t work?” These are very important questions to ask. Some approaches work more quickly than others. Some options may take time to adjust to. And some options won’t necessarily work for everyone. With answers to these questions, you leave with realistic expectations and may save yourself some heartache.
For example, you might think that an approach isn’t working if you don’t see any improvement in your loved one’s symptoms within a week. However, that approach may take up to two weeks to improve certain symptoms. By knowing this when you leave the doctor’s office, you have an idea of what to expect. You also know when to schedule another appointment if you don’t see improvement within a certain time frame.
What questions have you asked your healthcare team after diagnosis that you think would help other families?
-Rob McCandlish, RDN
Rob McCandlish is a registered dietitian nutritionist (RDN) who joined the Nutricia team in 2010. Rob has years of experience at Nutricia following food allergy research, working with Neocate products, talking with Neocate families and learning about the science behind Neocate and food allergies. Rob has two nephews who both used Neocate for their cow milk allergies!