Episode Description
In this week’s episode of ABA Unfiltered, Tim is joined by Dr. Christina Marchesano, M.D., ADP to discuss Think Neurology for Kids and the amazing work they do for their patients. During their conversation, Dr. Marchesano outlines the importance of a comprehensive diagnostic assessment for families who are concerned about their child’s development, and how more information about the whole child can better empower families to ensure they are seeking the most appropriate level of care. Whether you are a parent or a clinician this episode will prove to be of great value to you as it provides great insight into how to be informed and questions to ask.
Full transcript
0:06 Tim Crilly:
Hello and welcome back to ABA Unfiltered. I’m your host, Tim Crilly, and today I’m really excited to welcome our next guest. And I know I say that every time because I am genuinely sort of surprised when people agree to come on and talk with me. But today we have Dr. Cristina Marchesano from THINK Neurology for Kids. And I had the opportunity to learn a little bit about them last fall when we were doing an outcome summit within BlueSprig. We had some insiders and we had some outsiders come in and talk about the importance of outcomes. And ever since that conversation and hearing about her practice, I really wanted to have her on to get a sense of who they are, what they do, but more importantly, impart some wisdom on to us, the audience here about the importance of comprehensive assessments, advice that we would want to give to families, and you know, sort of advice that we can give to clinicians out there that might be working with more of those complex cases. So, Doctor, I’m really excited to have you on. If you don’t mind maybe spending a minute or two giving us a little bit of background about you specifically, and then if you could tell us a little bit more about THINK Neurology for Kids.
1:25 Dr. Cristina Marchesano:
Yes, of course. Well, first of all, I just want to express my gratitude and thanks to both yourself, Tim, and BlueSprig. You know, THINK Neurology for Kids has had uh kind of this affiliation and collaborative uh kind of relationship with BlueSprig for many years, and you know, you guys provide very high-level care for your patients, and that’s one reason that you know we trust our patients to your care. And so thank thank you for this opportunity. Uh, and you know, yeah, I’ll kind of start with a little bit about myself. So I’m a board board certified pediatrician, and I trained at the University of Texas Medical School here in Houston uh after undergrad, and that’s where my husband and I met, and he is the founder of THINK Neurology for Kids, uh, Dr. Shaun Varghese. And so we met during medical school. Uh, we we kind of trained together, we got engaged between our intern year and of res after our intern year of residency, and uh, and then when he completed his training, he started THINK Neurology for Kids, and that was back in 2014. So almost seven years ago now uh is when we started the practice. And uh so I was initially practicing as a general pediatrician in a private practice and uh joined my husband a couple years later doing kind of more uh child development and ADHD. So that’s kind of my specialty is, you know, children with a lot of learning disabilities. A lot of them do have coexisting autism as well, as you probably know. Uh, and so I, you know, it’s been great for me because it’s really opened my eyes to, as you mentioned, a lot of patients that tend to get misdiagnosed, or you know, there’s other underlying issues there. And so, you know, THINK Neurology for Kids kind of was founded initially by my husband with the goal of providing accessible and high-quality child neurology care to the community. And, you know, I think that’s one thing that sets us apart, especially from kind of the big major players here in Houston, is the accessibility. And so, you know, typically patients can take six to 18 months to get an autism evaluation here in Houston. Uh, we can typically get patients in within one to two weeks, sometimes, sometimes a few weeks longer, but you know, that’s significantly shorter than kind of the standard of care. That’s right. That’s in the community.
3:58 Tim Crilly:
Yeah, and then that’s obviously a huge roadblock for for families out there is that you know, the the hurry up and and wait. You know, you spend all this time, everyone telling you, you gotta go get this, gotta go get this. But then you do have to kind of wait. And then unfortunately, sometimes when you then get that diagnosis, then you’re you’re back at the end of the line and you’re and you’re waiting for whatever sort of services that that need to come out. So you know, that’s great that you know practices like yours are working towards uh uh sort of trying to expedite those things because uh families uh families need to get in, they need to get seen. And you know, uh unfortunately, you know, I I spent some time working on the health plan side out here in California. And basically the law out here uh you know, if a pediatrician just signed a script that said autism, you know, that was that was enough. And it’s not to say that that child didn’t have autism, but it was not really born out of any sort of uh real fundamental comprehensive exam or assessment or you know, however the language is. And you know, not everyone that came with that type of of you know uh formal documentation really fit into uh the the right the right area and and that can cause problems. So I do want to touch on that a little bit, but uh you know sort of the the genesis of wanting to have you on was sort of uh that outcomes conversation, and it really uh sparked my uh interest to say you know we want to we want to pre-programming that is designed to obviously impact in a positive way the client but also the family. So a part of that in order to have the right type of program in place, it really starts with with folks like you at the very beginning. So can you can you talk a little bit about you know what does a comprehensive exam or assessment look like? What do you guys uh do to ensure that at the beginning the the you know sort of the the best pieces of information are brought out so that family can can get off on the right path from the beginning. So you could kind of walk us through what a comprehensive assessment looks like.
6:08 Dr. Cristina Marchesano:
Yes, of course. So, really for us, comprehensive assessment is key to assess for any potential underlying neurologic or genetic issues that can lead to obviously a more focused treatment plan. And so our goal is always to really do a complete assessment that starts with obviously a you know history and physical exam with the patient. Uh, we do obviously an autism assessment to see if that patient will meet criteria for autism, and then looking for underlying neurological issues, we do an EEG on all of our autistic patients. And EEG stands for an electroencephalogram, and that looks at the brain waves to ensure that we’re not missing something potentially more serious neurologically that can explain the difficulties that these patients are having with learning and social skills, communication. Uh, and you know, there’s some pretty pretty astounding statistics on the percentage of patients with autism spectrum disorder that have coexisting epilepsy. And, you know, those patients with epilepsy, a lot of times they don’t they’re not aware. So an EEG, it really is the standard of care now. Any patient who’s been diagnosed with autism should have an EEG done to ensure that they don’t have any underlying epilepsy. Um, and so the prevalence of that’s kind of published out there is about 30% of uh epilepsy in autism spectrum. And but then they say that ASD occurs in up to 46% of children with epilepsy. So a lot of these kids with epilepsy have been diagnosed with with autism spectrum because it goes untreated, you know, for whatever there’s there’s various reasons, but um there’s an there’s some recent studies that they’ve done also more recent that showed even a higher prevalence. A lot of times, if they are going to a primary care provider, they may not necessarily do that full assessment because they’re not really focused on the neurological, you know, underlying issues or more focused on like, okay, now this is what they can see out in front of them, behavior, things like that. Exactly. So that’s key. And then genetic testing we do on all of our patients, a chromosomal microarray and a fragile X test. And we do it with a swab, so it’s very, it’s non-invasive, we don’t have to draw blood on the patient. Um, and so that’s that’s key as well. So what we have found is that with that approach, and then of course we refer them to therapy. So then you get into the management side of it, where we recommend all patients that have a diagnosis of autism uh be enrolled in ABA therapy, potentially coexisting speech occupation, depending on their needs, um, and then social skills classes we also recommend uh depending on you know the age of the child and how relevant that would be. So, really that’s kind of our approach that we have. And I feel like that pretty much gives you a very comprehensive approach and a complete assessment for these patients. Um and you know, there’s definitely we get these patients in and then we follow up. And there’s always like red flags that kind of indicate, look, maybe the patient never got the EEG done or whatever it may be. And there are all the obviously things that would indicate, hey, this is kind of a red flag. A little, a little light bulb goes off, and you’re like, wait, there may be something else going on here. So, but definitely, you know, getting that evaluation done at the beginning is key because as you know, early intervention leads to early treatment, which leads to better outcomes.
9:48 Tim Crilly:
Yeah. So, you know, and and I think you know, you’re sparking a lot of a lot of thoughts here. So, you know, you you you say, you know, at the epilepsy thing alone uh kind of can be you know, autism or I think what you’re saying is sort of can mask that, and you might never realize that someone has uh possibly you know both going on at once because maybe uh it represents in a way that uh that looks like maybe it’s it’s it’s it’s autism, but it could be epilepsy. So how much of what you guys do is uh sort of a re-diagnosis for for for families that maybe got a diagnosis here, it just doesn’t seem to be accurate. Do you see a lot of that in the community at the at this time?
10:34 Dr. Cristina Marchesano:
We do. Yeah, I mean, you know, it’s it’s kind of hit or miss. We have a lot of patients that are coming to us as a first-time diagnosis, and then we do have a lot of patients that are second opinions, or you know, maybe they’ve been in ABA therapy for years, and there’s some red flags that either the BCBA detected, you know, the parent has some concerns, whatever it may be, that are like maybe there is something else going on. So I’ll give you an example. We had uh my husband and I have a pretty close family friend, very affluent family, that the child had been diagnosed with autism, speech delay, learning disabilities. And he was in very like full-time ABA. He was getting tutoring, like every day of the week, like intense interventions. Uh, and he was also getting different types of other types of therapies as well, and then accommodations in school. So that was for years. He came and finally saw, he actually saw me for ADHD, and he already had this diagnosis of autism at the time. He was getting, he was getting all the therapies, but he had never had a full neurological workup. So, you know, there were some red flags there. Um, and so I ordered an EEG on him, and he had innumerable seizures. So he had epilepsy, and it’s not always the type of epilepsy people think of as like you fall to the ground shaking. So there are, you know, complex partial epilepsies, there’s silent type seizures, there’s a lot of other types of epilepsy that are not obvious to you know the family, even the pediatrician, you know, these aren’t things that they may not detect. And so in that patient specifically, he was started on seizure medication and he now is excelling academically, socially, you know, just totally different child. And his mom jokes with us. She says, um, he used to never like talk back to me, and now he’s like always talking back to me. And yeah, well, careful what you wish for, right?
12:33 Tim Crilly:
Yeah.
12:34 Dr. Cristina Marchesano:
Right, exactly.
12:35 Tim Crilly:
Yeah, I, you know, back in the old days when I used to, you know, be more involved with with the treatment part, you know, parents would just I just want him to talk, I just want him to talk. And then six months later, he won’t shut up, he won’t shut up. You know, it’s uh you know, it’s one of those things. Uh, you know, but that’s that’s that’s really, you know, it’s it’s amazing, obviously, that you know, you can find this and and and and and help. Um, how common do you think that is? I mean, do you think um it’s something that’s a little bit more prevalent than we maybe even realize?
13:06 Dr. Cristina Marchesano:
Yes, I I for sure think that it’s a lot more common that is published in the literature, and it’s a lot more common than even the general practitioner is aware of. Um, and I, you know, I’ll speak to that because I came from that general pediatric side of medicine and I was working in a private practice, and you know, these I would I wouldn’t have really thought to get an EEG on a patient with autism had I not now seen the other side of it, you know. And so I encourage patients that have been given a diagnosis of autism that they should see a neurologist and look for any underlying neurological issues. Uh, you know, a lot of times the pediatrician will send them for an evaluation, but not always. So, you know, I always tell families, look, you’re gonna be your child’s biggest advocate, and it’s gonna be your responsibility to really push for a full assessment, whatever treatment. You know, if there’s red flags, like that’s that’s gonna be on you to really fight, fight for your child, um, because they’re gonna, you know, no one’s gonna really fight for your child the way you would. Sure. So that’s what I always tell parents.
14:17 Tim Crilly:
Do you find um that there’s roadblocks with some funding sources as it relates to getting as many assessments as that as there should be? Do you guys see that as a as a as a roadblock?
14:29 Dr. Cristina Marchesano:
I do with some practices. So uh, you know, I luckily like we accept Medicaid, uh, commercial insurance. Like we we want to provide accessible care to everyone regardless of their socioeconomic status. So that’s kind of our mission, but I know that’s that’s not the case across the whole country. And so, yes, I do think there are a lot of barriers to care for underserved, you know, families that may not have commercial insurance, or because they they can’t get in with a provider that accepts Medicaid, um, or they have to be cash pay and they can’t afford that. And so it’s very unfortunate. Um, and you know, hopefully more practices exist like we do across the country that are providing more accessible care for all patients. Uh, and but I agree with you, there’s a lot of barriers, not only cost of it, but just education. So people don’t really know what to ask for, and a lot of pediatricians don’t, like I mentioned, necessarily know to do the full assessment. Um, there may not be a neurologist in every city or you know, town in in America. I know there aren’t because child neurology is a very underserved area of medicine.
15:47 Tim Crilly:
Why why why is that, do you think?
15:51 Dr. Cristina Marchesano:
Uh there aren’t very many child neurology training programs in the country. So uh the ones that I I I don’t know the exact number, but the number of residents coming out of training each year is not very high compared to other subspecialties in pediatrics. And so that’s that’s kind of the biggest reason is there just aren’t that many training programs. And so as a result, there aren’t that many physicians like graduating each year. Um, but also a lot of them stay in academics, aren’t necessarily going out to the communities.
16:24 Tim Crilly:
Practicing. Yeah. You know, it’s it’s you know, obviously at probably every level of healthcare, there’s not enough, not enough to go around as it relates to you know the needs of the community, certainly in the ABA world, but you know, certain parts of the country, yes, you have an an ample amount of clinicians that are able to go out and uh and and serve serve those communities uh but in others it becomes it becomes more of a challenge when you get into different parts of even just within states. You know, Texas is a giant place. I’m out here in California. California is a giant place, but there’s places where it’s easy, it’s accessible, but then you get a little bit outside of that and it becomes problematic. So I would imagine that you know, you know, the the weight, the wait list and um things like that um are uh a big level of frustration for families. So that then sort of creates this, well, let me just get something on a piece of paper from someone so I can at least start something. But that something they start could in theory have a negative impact because it’s not the right uh type of care that they should be getting at that point in time. Um, you know, what what’s the what what are your thoughts on that? Like what’s the the the misdiagnosis aspect of it? Maybe this is too much heavy lifting for this conversation, but how do we how do we work towards um fixing that? Isn’t it where does the education really need to start in order to get the the right professionals in front of the right clients?
18:01 Dr. Cristina Marchesano:
Right. You know, I think it it’s multiple levels of education. So, you know, the clinicians need to be better educated. And I think it’s happening. Like the American Academy of Pediatrics has has published recommendations on autism evaluations and that they should those patients should be getting EEGs. So there is more literature from a clinician side that’s that’s kind of out there now. Um, but even just making BCBAs more aware because maybe the pediatrician missed it and the patient’s now starting an ABA therapy, you know, potentially a BCBA could look and say, hey, you know, these are some red flags, maybe they need kind of further evaluation. And they could talk to the family, or you know, usually they’re in communication with the primary care physician. Um, so expressing some of those concerns that can kind of help. But, you know, the parents also I think need to be educated. And this this is one avenue that could potentially help. So these podcasts, you know, hopefully are reaching out to families that are out there that don’t really know what they should be asking for. They don’t really know, you know, what information that they need to get the care that they should be getting for their child. So, you know, these types of things are very beneficial. And hopefully these families can can find kind of these podcasts so then they can be informed and and know what they need to know.
19:24 Tim Crilly:
Yeah, well, I I appreciate that. And I was doing a sublet c celebratory gesture when you you said this podcast. Uh I know you you at home can’t say that, but you know, I I the more you talk, the more the more I start thinking, you know, from a funding standpoint. If I’m a health planner and you know how important I mean, the the importance I guess they should be placing is on what what you guys do, even if it costs a little bit more at the front to add five or six, two or three, whatever it is things, because if you send someone down two, three years of of ABA, the cost is insane. And if it’s the wrong service, then you have to go back to the beginning. So I you know, I I know we can’t solve for that today, but that feels like something that you feel like a um, but I think I think the health plans really, you know, they they probably need to to to to to be brought into that conversation to say, I I know more today to to spend on this, but if you get you know the these clients in the right uh place at the start, that uh that time and and money is going to be uh you know way less for you on that that other end. So, you know, I I think they do have a role to to to play in this. Uh getting that ball rolling isn’t always the easiest.
20:49 Dr. Cristina Marchesano:
Yeah. I think it comes down to having the right support. So I mean, we have talked about, you know, having these fights or conversations with different payers that even refuse to pay for EEGs for these patients that come to find out have epilepsy. And, you know, they they won’t cover the cost of getting an EEG. But as you’re saying, the cost savings in the long run is is substantial uh for a patient that, you know, if you just do the evaluation from the very beginning, that saves years of you know, therapy that they didn’t need or something. Yeah, it wasn’t the right and of course there are we want to save those spots for patients who really need it, yes, which is a huge I mean, there’s a huge need there. And there’s tons of patients that have autism spectrum disorder without any underlying epilepsy or whatever it may be. Well, there’s patients who have epilepsy that still need ABA therapy. Uh so you know, it’s it it’s kind of hard because there is kind of that mix and these are coexisting conditions in some cases, not necessarily a cause and effect relationship. So uh, but yes, getting that evaluation early is is definitely key and The payer don’t always understand that, but we’ll try to do our.
22:10 Tim Crilly:
So excuse my sort of ignorance on this, but if if if I were to find out that that my child had, you know, had was having trouble learning or concentrating and doing all those things, and it turns out it was epilepsy and there is medication that sort of helps. How much um relearning needs needs to occur? Or or is there any? I mean, is does does that create gaps in sort of their their skill sets if they weren’t able to? I mean, it’s not like it flips a switch, right? Or am I wrong about that?
22:40 Dr. Cristina Marchesano:
No, you’re correct. So it does take time, especially given some of these patients go years, you know, with kind of a misdiagnosis or a missed diagnosis, I guess I should say in some cases. So in in that case, yes. I mean, it takes time for those patients. A lot of them, like the example that I gave earlier of the child that had been diagnosed with autism was started on seizure medication, it still took him six months to a year to really gain all of those like social skills and communication who’s actually making progress, right? And so that’s kind of one of those things I always tell, you know, that it’s good for BCBAs to know, RBTs, really anyone in the on the therapy side. Um, you know, if a patient has failure to improve or regression, obviously those are big red flags because they’re in intensive therapy. We know that BlueSprig does a great job with our patients, so they should be making progress. If they’re not making progress, those are red flags that there probably is something else going on.
23:42 Tim Crilly:
Sure. And I don’t want to throw my brethren under the bus here, but you know, ABA itself is a is a behavioral intervention. So, you know, if a behavior is being maintained because someone has epilepsy or another underlying uh condition, ABA isn’t going to solve for that.
24:04 Dr. Cristina Marchesano:
Right.
24:04 Tim Crilly:
You know, um, so you know, and it’s an important thing if you do see those roadblocks. And I did want to get to that and you kind of touched on it, but sort of, you know, what sort of things would you recommend to the average BCBA out there, sort of red flags? What what, you know, obviously the lack of progress, uh, you know, sort of um regressions. Is there anything else that’s sort of, you know, if they see they should be getting on the phone with someone like you?
24:29 Dr. Cristina Marchesano:
Yeah, abnormal movements, like the patient I gave the example of earlier actually had some unusual eye movements and blinking that initially was attributed to tics kind of coexisting with his ADHD. Um, we’ll come to find out he his eye movements were from his seizures that he was having. So any kind of unusual like motor movements, you know, especially with the eyes, the eyes especially can that can indicate potentially a seizure. Um, you know, patients, even it doesn’t even necessarily need to be neurology related, but like sleep disturbances, you know, maybe there is a true like sleep disorder they need to see a sleep doctor for. Um, you know, sleep’s one of those things that plays a role in mood, attention, behavior, cognition and your ability to be successful the next day. Exactly. So if you’re not well rested, that that’s a big kind of red flag. So you know, maybe there’s some weakness, some muscle, something muscular. It could be genetic. So, you know, those are red flags.
25:32 Tim Crilly:
Yeah. Uh you know, uh, before we jumped on, I was telling Cristina, I said, you know, I usually shoot for about you know 26, 28, 20, 30 minutes. And, you know, it it you blink and it and it goes by in a second. So I mean we’re we’re coming up on on the 26th, 26th minute here. Um, which is fine. And I’m still listening and I’m still enjoying myself. So, you know, um, you know, Lucas will will produce Lucas will will say it’s okay, I’m sure. But um, you know, can you talk just really quick and then you know we can sort of um let you get on with the important work of your day? But sort of, you know, for for families, sort of the the advice you would give them in and how how knowledge, even if it’s things maybe you don’t want to hear and you’re afraid to hear it, just how important that knowledge and understanding what power that gives you to sort of take control of your child’s health. Can you can you just maybe just a couple thoughts on that and then we can let you get on with it?
26:33 Dr. Cristina Marchesano:
I always say doing, you know, doing an EEG, doing genetic testing, you’re never going to be faulted by doing that. So just you know, like you mentioned before, there are some barriers or factors that can lead to patients not doing that, you know, inconvenience, noncompliance, or scared, the cost of it, obviously. But for them not to do it and then later find out, you know, there was something that was potentially missed.
27:01 Tim Crilly:
Okay. So here’s what I’m thinking. Um, if there’s ever ABA conferences again, we hit the road. Um you you get we’ll get a couple people and we’ll we’ll we’ll put we’ll put a panel together and we’ll start educating that this community because I I think from a from a BCBA standpoint, you know, it it’s very easy to say, here’s a diagnosis that says autism, here’s my treatment plan, and I’m just gonna go. And it’s important that I think we remind people that this is a very complex thing. And it’s not just the autism that that’s complex, it’s all all the other things that you just uh touched on and and how important it is to not just say, okay, well, that person got a diagnosis six years ago. We should just keep plugging along. And it’s important to say, wait, you know, how we got to look at this thing maybe from a from a different angle. Why are we still providing ABA six years later? That that should be an indication that that maybe maybe something something is amiss here. So exactly, exactly. Okay, well, you were too interesting. Um, you know, uh maybe we could we could put it on one and a half times speed, I I guess, to to get it. You’re not a slow talker, so you definitely got you got your money’s worth on your word count, I’m sure. Uh but uh Cristina, thanks so much for for popping on and and and chatting. And I I would love, you know, anytime something interesting pops into your brain, let us know. And and we’d love to have you back on to talk about it. Or I don’t know, maybe we could do some sort of case study CEU or I don’t know, something fun like that. But I think the more people that we can we can educate the educate the better. So thanks again, and and and thank you to everybody out there for for tuning in to ABA Unfiltered. Um, I hope you enjoyed listening as much as I enjoyed having this conversation. So thanks again.
28:49 Dr. Cristina Marchesano:
Thank you again, Tim, and to BlueSprig. You got it. Talk soon. Thanks.