Wendy Nawara: We are at the AAP National Conference and Exhibition. And I’m Wendy Nawara from ASPIRE, and I’m here with Dr. Maeve O’Connor, who is an allergist, immunologist. Who practices with children who have PANS and PANDAS.
Dr. O’Connor, we have some questions for you. What is it that a parent can do to prepare for an appointment with an immunologist?
Dr. O’Connor: Well, the first thing I’ll say is be prepared to be there a while, because those appointments take a long time. You can make it a little bit more streamlined by bringing all of the past medical records. I ask all of my patients to send them ahead of time so that I can review them. But then I also ask for a hard copy. And this is going to sound very simple, but organizing that binder in a way chronologically and by sections. What I mean by that is the first moment you notice something was wrong, tell the story. Then I want the story before anything was wrong. So I want a written dialog of everything that has happened with the child, then I would like any lab results that have been done in chronological order. Any radiology, MRIs or anything like that. By specialty. So if you’ve seen a pediatrician, if you’ve seen a neurologist all in order in a nice binder, it makes life so much easier for the immunologist who’s trying to (read the files). We usually get called last, which I believe is a mistake. And so it’s a lot of history, a lot of information to weed through. And if it’s very organized, the appointment goes much smoother. And we can also think clearer through all of the other navigating what everybody else has already done.
Wendy Nawara: Yes. And I think it’s really great advice for parents out there who you are going to any specialist. It’s not specific just to Immunology. You need to get your ducks in a row around and your files in order before you go and see a physician.
Dr. O’Connor: And I say that for any disease state, really, because the way medicine is going, we are becoming less individualized, unfortunately, not in my clinic. But it’s becoming so much more, “get em in, get em out”. We really don’t spend as much time with patients as we used to be able to. And so the only way to get proper health care, in my personal opinion, is to advocate for yourself and your child. And information is power. The more information I have, the better I can take care of your child or yourself.
Wendy Nawara: Well, I think I think you just said it right there that being able to advocate for your child is paramount to your child being able to receive good care and expeditious treatment. So thank you very much.
Dr. O’Connor: I would just like to also mention, be prepared that their child is going to have blood work done. Be prepared and prepared the child for that. I know, obviously, these children have a lot of anxiety already, but somehow letting them know that it’s not that the doctor’s not bad because they want the blood. They want the blood so they can help. And if their child comes in knowing that and we are friend and not foe, it helps a lot as well. And as immunologists, we order a lot of specialized tests. So sometimes it can be quite a few tubes as well.
Wendy Nawara: And if we can move on to a slightly different topic. Can you tell me what you think the top three things that other immunologists or really any specialty what they need to know about PANS PANDAS?
Dr. O’Connor: The number one thing I would say is that PANDAS and PANS, are real diseases and they are not something to be taken lightly. That’s the number one thing I would say. There there’s still some, unfortunately, I would have to use the word ignorance out there amongst physicians, amongst health care providers that this disease is not real. And it is. The other thing I would say is that there are treatment options out there. They do work. And I would like to educate all health care providers on those types of treatments. And the third thing I would say is to understand that this is a disease that does not just affect the child, it affects the entire family. And you have to realize that and take care of the entire family, not just the child. And one other thing.
My fourth point would be don’t forget that the child is also the patient and to talk to the patient. A lot of times I’ll start speaking to the child and the mom will interrupt me or the dad will interrupt me or the grandmother will interrupt. And I’ll say I’m going to listen to you. But I’d like to speak to John because John’s the patient. So don’t forget that element as well.
Wendy Nawara: Right. I think those are very good tips for all doctors to hear, especially include that child in the process.
Dr. O’Connor: Right. Because they’ve heard the story. They know what’s going on. And they’re tired of hearing the story and they’re tired of being talked about. They want to sometimes be talked to.
Wendy Nawara: And you know what? There’s one other thing I’d like to add. And this is just from another parent’s perspective. It is that PANDAS and PANS not just happening to young children.
Dr. O’Connor: Right. I was just about to say the same thing.
Wendy Nawara: It’s happening to young adults in our community. It’s happening to even some of us parents in our community. We are going to see that genetics are there.
Dr. O’Connor: I think that’s a very important point.
Wendy Nawara: Treat the whole person.
Dr. O’Connor: Right. And don’t only look for it in children. That is true. I’ve had your parents come to me thinking they may have had PANDAS my whole life. My latest patient that I just saw, I saw a 23 year old new diagnosis. I saw an even older man who came to see me recently. So we call it PANDAS PANS now. We’re still looking for a new name. But obviously, it’s autoimmune, post infectious encephalopathy, and it could affect all. That’s a great point.
Wendy Nawara: Thank you so much.
Dr. O’Connor: Oh, you’re so welcome.
Wendy Nawara: I’m so great to have you at our booth and educating so many physicians today. Thanks.
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