Audience Q&A with Dr. Joseph Sirven

If you have a neurology team that really hasn’t been following this plan, then how do you actually communicate this as a need as the parent?

This is considered a vital aspect of the care of a child with epilepsy or with any neurological condition. And so, it’s important to know that this is what Dr. Sirven and CURE Epilepsy and other teams are putting together. Hey, what a cool concept. This is actually considered a guideline of standard of care. And so, if you’re not having this discussion, I would say you’ve got to bring this up. You’ve got to ask, say, “Can we have a formal transition type of meeting?” Now to a pediatrician, they’re probably going to get that and they’ll understand.

But maybe you’re not seeing a pediatric neurologist. Maybe you’re seeing an adult neurologist already because that’s who’s in the community, or you’re seeing your family care. This is to be brought to them. That’s why I gave you some of those resources. Some of those are actually handouts you can print out, especially at the transition site, that you can actually even bring to your physicians with questions so you can begin answering these.

So as I mentioned earlier, a lot of this has to do with self-advocating and also planning. Like any good parent, ask the questions. If they’re not coming to you with this, know that by the age of 13, this should begin to be brought up and bring this up, because even for busy clinicians, they will stop, they care, they want to help. They just needed to be reminded sometimes, because you’re so busy and focused on the acute issue that you forget that there’s a future big picture that we need to address. Sometimes asking for a time appointment for that is going to be the way that you get there.

Are there already insurance issues or even possible legal ramifications, if people wish to stay with actually their pediatric clinicians if they’re very comfortable with them?

Yeah. There’s no insurance ramification per se. The pediatricians will be covered under the same plans as an adult neurologist. I’ve not seen in my career a situation where I have seen lack of payment or not paying because an adult is with a pediatric neurologist. It doesn’t work that way. It certainly doesn’t work that way in the current laws. Having said that, there are some pragmatic issues, and I’m delighted for the person who has that pediatric neurologist. But the fact of the matter is if there is a huge shortage of pediatric neurologists, and then if you expand that out, there’s an even bigger shortage of pediatric epilepsy neurologist out in the United States.

And so, oftentimes you may see that it’s not that the pediatrician wants to let go of you or anything along those lines. Most pediatricians, they love taking care of their patients. It’s just that, at some point, because the lines are so long and there are so few of us, so few of those physicians out there, that the transition may come up to you. Now maybe you’re in a community that that’s who you’re going to see because that’s all you have, but know that that’s the reality. Insurance sticks its neck in many things, but, fortunately, has not stuck its head in this equation just yet.

What do you suggest if your pediatric team has not yet identified, an adult neurologist and does insurance play a role in choosing those physicians?

First of all, you ask the pediatric team to help choose who are my choices out there. You don’t have to ask them for a specific person, even though you’re going to get one, but can you give me a list of names that you think may be good for my transition? Now insurance, they indirectly play a role here. One of the things that is occurring in modern healthcare now is fairly large networks of doctors. If you think about it, most of us get insurance through our employers, and employers, they get their insurance coverage through a network. So you work for a company, the company has networks.

Well, the network may say, “These are the people in my plan.” So you may be on the kid plan, the pediatric plan, these are the doctors on it. But then for adults, the plan is whatever they spelled out that they’re going to cover as being within network. So I guess, indirectly, how your insurance is structured, how tight do you have to go with the network. If you have a PPO insurance, that means you get to choose fairly broadly. If you’re in a health maintenance organization or a version of that type of organization, you may not have a broad choice as that, and that may impact how much out-of-pocket you have to put out for continued care in the hospital. So the network, the insurance plan may not do it, but the network may. I hope that I picked out that nuance for the listener out there.

To what extent are records transferred over to you providers? Do they have to handle this or does their pediatric neurologist take care of this?

That should be a simple answer, and it’s not going to be. So I’m going to try and talk it through at the end.

Medical records are technically owned by the patient, but housed by the physician, hospital, and all those folks. They can only travel to a new doctor with the permission of the patient. So the patient has to give permission. Patient or parent, whoever is in charge, have to give permission for those records to travel from doctor A to doctor B, from pediatrician to adult. So that has to be instituted from there.

In some cases, it’s really easy. For instance, where I work, I’m on a large electronic medical record known as Epic. One of the benefits of Epic is the fact that anyone who’s on Epic, by clicking a button with the patient, the records will automatically open up from one institution to a completely different institution if they’re both on. Now if you’re not on Epic, then physical records have to be sent, either paper or electronically, to the doctor in some way. But the permission, regardless if it’s electronic or paper, is the same. It has to come from the patient. The patient technically owns those records.

Is a legal power of attorney required for joining her adult child who’s over the age of 18 at her doctor’s appointments?

Well, the fact of the matter is that at the age of consent or the age of majority, which is defined state-by-state. 18 is the typical one for most states in the United States. I can’t think of one that isn’t, so I’ll just say age 18. They’re legally adults unless there’s a power of attorney that says that someone else is there. Now to your listener’s question, if they don’t have a power of attorney and the child or your child, even though as a parent, they’re always your children, but your child can say they don’t want you there and the healthcare group has to honor that.

So to your listener, yes, legally, if they’re 18 and the child has consent regardless and there’s no power of attorney, it’s up to the child to say whether they want them there or not. That’s legally. I mean it doesn’t have to be ugly or anything along those lines, but, yes, that is true from a legal perspective.

Are there different steps involved when transitioning a child who might be diagnosed with both epilepsy and autism spectrum disorder?

I get a lot of kids or young adults that have both. In fact, as an adult epileptologist, autism comes into the exam room, the clinic office very frequently together. What the transition is in that situation is that you spelled out not just what you’re doing for the epilepsy, but what’s the plan for the autism, because we focus so much on the epilepsy that sometimes the autism piece gets almost placed on the side, and yet that may be the bigger issue and the epilepsy’s not such a huge one.

So the short answer to the question is that those have to both be laid out. What do we do when there’s issues with behavior? What do we do when there’s issues with regards to management? That has to be spelled out because oftentimes they get conflated in the exam room, in the office, and they’re not. It’s just laying out what’s my course of action for each of these. That’s important because the management are very different, and understanding where the medications may play a role, what’s been tried, what’s worked, laying those things out can be a godsend in that reaction.

The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.