Food Allergy and Your Kiddo
If your kiddo has a food allergy, then this is the podcast for you. Join food allergy experts - board-certified allergist Dr. Alice Hoyt, MD, FAAAAI, and food allergy mama Pam Lestage, MBA - as they dive into all things food allergy. Hear interviews with world-renown allergists as well as food allergy advocates and food allergy families, just like yours. This podcast will answer many of your food allergy questions and provide you with strategies to make your life and your family's life ones of LESS STRESS and MORE JOY.
Food Allergy and Your Kiddo
Food Allergies and Shared Decision-Making: What Parents Need to Know
Food allergy is a complex medical condition, so it's no surprise that navigating life with food allergies can be challenging. Shared decision-making can help.
Join Dr. Alice Hoyt as she interviews colleague Dr. Sakina Bajowala on shared decision-making, especially as it pertains to food allergies and immunotherapy.
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Hello and welcome to the Food Allergy and your Kiddo Podcast. I am your host, dr Alice Hoyt, delighted to be joined today by Dr Sakina Bajawala. She is a board-certified pediatrician and allergist who practices in the western suburbs of Chicago. She is a fellow of the American Academy of Allergy, asthma and Immunology and she is an absolute boss when it comes to immunotherapy. And part of what I think makes her a boss getting to know her some is really her approach to working with families and really what we're going to talk about today, which is shared decision-making. So, dr Bajawala, thanks so much for coming to the podcast.
Speaker 2:Well, thank you so much for having me. I'm really looking forward to talking to you today.
Speaker 1:Me too, so let's just dive right in. How do you really define like you internally, as a physician, as a kiddos doctor? How do you really define shared decision-making?
Speaker 2:So to me, in my practice, shared decision-making essentially means that I ask families what their goals are and I give them all of their options. We comprehensively discuss the risks and benefits of all the options that are available to them, I let them know which option I believe would be most likely to meet their goals and their expectations, and then I shut my mouth and I sit back and I listen and wait for them to ask me questions and I answer them. But it is not my job as the physician or allergist to make the call on what it is we are going to do. It is my job to share the information and be an advisor, and it is the patient's and the family's job to together come to a decision on which of the options I have presented that they want to pursue.
Speaker 1:That is very pretty much straight in line with the way I try to approach my families as well is sort of I'm a guide and I'm a very well researched and expert guide and I'm going to present the options and present them as how I think would best serve that patient and discuss things especially. You know, let's just dive into some cases here. I've certainly had kiddos come to me who's the family was interested in oral immunotherapy, but the kiddo, who was maybe a tween or a teen, was just like absolute no go, like they're a very important part of shared decision-making and the team and so OIT is just not an option for them right now because they're not on board with it. And so then we discuss with the parents and with the kiddo too. Like you know, this doesn't seem like this is a good option right now, and that's okay.
Speaker 1:I think sometimes social media here comes a tangent y'all. I think sometimes with social media treatments or you know the latest thing, it gets so sensationalized and people think everyone should do it or whatever the case may be. People have heard me on talk about the advertisement for palforzia be proactive about your child's food allergy. That ad is absolutely bonkers to me because you can be proactive about your child's food allergy and not have your child on palforzia and not see what it at all and you're still being proactive so standard of care remains avoidance and preparation with emergency medication.
Speaker 2:That is a standard of care. Now the standard of care may be changing, right, and it is changing very much so and very rapidly. But it's really important to emphasize to families when we're talking to them that your only options are not different treatment options, right, the first and foremost, the option available to you is to do what you've already been doing and we can help you do it more successfully which is avoidance and preparation and awareness of how to recognize an allergic reaction and springing to action quickly so in the event and hopefully unlikely event of an accidental exposure, you rapidly identify the symptoms and you give the appropriate treatment without delay. That's option number one always.
Speaker 1:I think that's so important that families hear that. You know so if you're listening to this and you've been told by three different food allergy mom friends that they're doing OIT, oit and SLIT and you know when are you going to do this with your child and it's and it's just not the right time for y'all to do it. I want you to hear what Dr Bajawala just said, that if it's not the right time, it's not the right time, and that avoidance is absolutely a fantastic management strategy for food allergy.
Speaker 2:And especially if you've already been doing it successfully, right? Yes, and from initial diagnosis all the way up until you're at the allergist's office and you've never had a reaction from accidental exposure, you have been successful and maybe you don't need treatment. Maybe the return on investment of a treatment in your particular case the calculations don't pan out and you're better off just continuing what you've already been doing. Quite well.
Speaker 1:I think this probably really speaks to parents of tweens and teens, in whom starting oral immunotherapy at least would be significantly life altering in a way that isn't necessarily positive.
Speaker 1:The reason I say that is because of the safety window that has to be followed. If you're doing oral immunotherapy in my office that's one hour before, two hours after the dose you're not doing anything that's raising your heart rate or your body temperature. Anytime you have a fever, take Motrin, a whole slew of things you're not dosing and that just is not consistent with a good quality of life for many tweens and especially many teens who are doing so many super cool before school and after school activities and it's really not feasible for them to do the OIT and keep doing activities. And we would never want them to stop doing those activities and then thinking about okay, what about when they go to college? Just say they're a junior or a senior in high school and they want to start OITs or somebody in their family wants them to start OIT. Then what's going to happen when they go to college? Nothing good with OIT.
Speaker 2:And it's a very different scenario If you have a child who began OIT when they were five or six.
Speaker 2:They reached maintenance by second or third grade and they've been in maintenance for years before they leave the nest and go out to function independently. By that point, most of my patients are only dosing maybe three to four times a week and I've already started shaving down their exercise restriction because they have been so successful for so long in maintenance. That is a very different scenario than showing up in my office when you have a high school junior which is, in my opinion, after experiencing this now the most stressful year of high school and saying, okay, we got to do this now and we need to be done before we go to college, otherwise I'm not going to let him go. Then I have to say, okay, let's take a step back. Who am I treating here? Am I treating the child or are we treating parental anxiety? Because if it's parental anxiety that we're treating, I don't need OIT to treat that. We have other tools at our disposal to help with that other the big toolkit of things we can do to help with that.
Speaker 1:Absolutely. I want to ask you when you are practicing shared decision making, which I imagine with you is just literally second nature, it's just how you practice. Medicine is through shared decision making. You're never walking into a room telling a family. This is what you're doing. You're walking into a room equipped to discuss all of the different management options. How do you do that with little kiddos compared to with your tweens and then also with your teens?
Speaker 2:I think it is vital that, even though they may not be at the age of consent, of legal consent, that young patients are actively involved in the decision making process and that they have an agency over their own bodies. For that reason, for any child in our practice, if they're over the age of 12, we get a sent written, a sent from the child. So there's consent which is kind of legal informed consent, and anyone 18 and up must do their own informed consent. Parents cannot do the informed consent for an 18 or 19 year old, but for patients who are younger than that but still very capable of having an informed discussion, of asking questions, of having very strong opinions about what their goals are and how they would like to achieve them, I have made it quite clear that without a sent from the patient, their permission to move forward with this treatment, it doesn't matter if the parents say don't worry about it, we're signing, we consent, it doesn't matter. I need a sent from that child and I will go through the same shared decision making process as I would with an older patient with these younger children. Just the words are different. Right, the conversation is at a level that kids can understand, because I need to know that they're motivated to do this and they're not just doing it to please the adults that they love.
Speaker 2:Children, by very nature of their existence, want to please the adults who they love and respect. That includes their parents and their teachers and their coaches, and also their doctors. They never want to be a disappointment and they, when pressed enough, will give you the answer that they think you want to hear, and so it's vitally important that, especially at that like nine to 17 year age group, that we don't stop asking just because we heard the answer we wanted, that we press a little further and try to hook holes in the ascent and say okay, but you understand, these are the ways in which your life will change, at least temporarily. Are you okay with that? Okay, but you understand that there's a strong possibility that you're really going to hate the taste of nuts and you're not going to particularly enjoy dosing every day. Are you okay with that? Right? You understand that you're going to have this exercise restriction. So if your friend knocks on your door and says let's go ride bikes, you might need to say I got to wait a little bit, right?
Speaker 2:These scenarios, these conversations, need to be explained to younger patients in a very concrete way and not in the abstract way that we discuss them with adults saying, well, there might be an exercise restriction or this or that with kids. You need to give specific examples and then sit back and wait for their reaction and their response. And you have to be able to pick up a nonverbal cues, because you might have someone who is saying yes, but their eyes are saying no, and you have to push and press when you see that and say I hear you saying yes, but I'm looking at your face and I can tell that you're hesitating a little bit and I'd like to talk about that a little more. Tell me, that's so good. I want to ask you about the idea of pursuing this process and then, once again, sit back and listen. Right, ask the question, but then don't just keep talking. Right, you have to wait and hear what the patient has to say and then address their concerns, because that's your primary responsibility. The patient is your responsibility, right?
Speaker 1:no-transcript.
Speaker 1:That is so good and it really comes back to transitioning from the pediatric care model to the adult care model, and one you know there's not many benefits to having a food allergy compared to not having a food allergy, but one potential benefit is that if we, as allergists, are doing our jobs correctly and doing it well, then when we see these kids once or twice a year, or if they're doing OIT sending, seeing them multiple times per month sometimes then we are assessing where they are in their care journey and, over time, helping them grow in that transition from being the kiddo where mom is making the decisions depending on the age, definitely having us since and them totally in on the process too, but really getting them to also where they know that they need to call to make an appointment, getting to where they know how to obtain their epinephrine autoinjector.
Speaker 1:And these are life skills that sometimes with our healthy kiddos that don't necessarily see the doctor except for like a physical every now and then, those kids don't necessarily learn and then it seems like all of a sudden a kid's 18 and mom can't do things so much anymore. The kiddo needs to do it because the kiddos now an adult right.
Speaker 1:Or so does the government right, and so if we're doing our jobs well and correctly, then when we're seeing these kids, we are helping them transition, and that really begins with that beautiful description of shared decision making that that you just laid out. It's that we're not going to bulldoze them. As well meaning as loving parents can be, it has to be shared decision making, and I think, too, what that tells the child, whether they're eight years old or 17 years old, is that you matter. Your voice matters. This is your body, and what you are doing with your body matters, and you are the boss of it.
Speaker 2:And what I will emphasize is the shared decision making process is not a single point in time. It is not something we only do at that first or second visit, when we're doing an informed consent or obtaining ascent and talking about risks and benefits of a treatment and signing on the dotted line right. This is an ongoing process because people's goals and priorities will change and evolve as they grow and evolve and as their life situation changes. So you may have a five or six year old who did beautifully with OIT and now they're 11 and they're hiding peanut M&M's under the couch cushions and we are sitting down and the parents say we need to get back on OIT, and of course that's their first instinct. You need to help us get back on OIT.
Speaker 2:And my instinct is well, maybe we don't need OIT anymore because clearly the patient doesn't want it anymore. So before I start to try to figure out what dose we're gonna resume OIT at, let's sit down and talk about why these peanuts are in under the couch instead of in your belly, and then we can go from there, because maybe all of a sudden the patient says you know, I find them so disgusting I can't, I dread it all day. It's ruining my quality of life. I am looking for any excuse to not do this anymore, but I was afraid my mom was gonna cry if I told her I didn't wanna do it. And lo and behold, mom is sitting in the corner crying because she feels guilt, and dad is sitting there saying, oh my gosh, how do I fix this? Yes, mom's crying, kid's hiding peanuts, and I think I want people to know that they have permission to change their minds.
Speaker 2:It is okay to change your mind and say this thing I wanted before, I don't want that anymore, and that's why it can be so beneficial to have multiple treatment modalities at our disposal. You know we've talked about, and you've talked about, subliminal immunotherapy on your podcast before. But this is a scenario when you have significant oral aversion but the patient and the family still desire some layer of protection, that a transition from oral immunotherapy down to subliminal immunotherapy may actually make a lot of sense. But historically we've always thought well, subliminal immunotherapy is lower dose, we get on that for a while and it's a bridge to oral immunotherapy. But it can go both ways and when we have the flexibility to pick and choose from this enormous toolkit of treatment options, we can serve our patients better, but only if they know that these options are available to them. Sometimes the patient doesn't realize, and the family doesn't realize, that if this thing isn't working out, all we have to do is pick up the phone and call our allergist and say, hey, we need some help, this isn't working for us, instead of trying to power through right, because, come, sit, talk to me, I will help you figure it out. Maybe you don't need to be eating 10, eight peanuts every day. Maybe one will get the job done. Or maybe we switch to sublingual, or maybe we say listen, o-i-t.
Speaker 2:Oral immunotherapy served its purpose during a time in your life when you needed it, before your frontal lobe was fully developed, when you were more impulsive, when you were surrounded by peanut butter and jelly sandwiches at school, when you were going to bake sales and play dates. But now you're 17,. You're 18, you can read your own labels Heck. You know how to cook, you can self-administer your own epinephrine, right? And you've decided that you have no desire to eat this food. It's not a failure. It's not a failure. It's not a failure. You've decided to stop now. And all of that work, all of that time, all of that money you put into that treatment was not for nothing, right? I think that's what people are afraid of that if we quit, all of that work we put in is a wash. It did no good, and that's not true. It served its purpose during a time when you needed it for safety, when you needed it for peace of mind, when you needed it for quality of life, and maybe now you don't need that anymore, and that's okay.
Speaker 1:And that's okay. And that's okay I know that there is a mom who needs to hear this, and that's okay. And things change and seasons change. We talk a lot about your season of life and this might not be the right season of life for OIT or SLIT, but maybe there's another season coming later and it will be, and it's all about safety and quality of life. Absolutely, dr Bajwala. I have loved our conversation today about shared decision-making. Thank you so much for coming on the podcast.
Speaker 2:Of course it's my pleasure. Thank you so much for inviting me.
Speaker 1:That's the episode. Thanks so much for tuning in. Of course I'm an allergist, but I'm not your allergist. So talk with your allergist about what you learned on this episode and visit us at foodallergyandyourkiddocom, where you can submit your family's questions. God bless you and God bless your family.