Do you think your child was exposed to alcohol or drugs during pregnancy? If so, a diagnosis can help your child access services and support. Check out this show with Dr. Yasmin Senturias, a developmental-behavioral pediatric specialist with 28 years of experience in developmental pediatrics and prenatal substance exposure. She worked with the American Academy of Pediatrics on developing their FASD Toolkit.
In this episode, we cover:
Prenatal Drug Exposure
FASD:
Dual Exposure to Alcohol and Drugs
Impact of Trauma
Resources:
Please leave us a rating or review RateThisPodcast.com/creatingafamily
Do you think your child was exposed to alcohol or drugs during pregnancy? If so, a diagnosis can help your child access services and support. Check out this show with Dr. Yasmin Senturias, a developmental-behavioral pediatric specialist with 28 years of experience in developmental pediatrics and prenatal substance exposure. She worked with the American Academy of Pediatrics on developing their FASD Toolkit.
In this episode, we cover:
Prenatal Drug Exposure
FASD:
Dual Exposure to Alcohol and Drugs
Impact of Trauma
Resources:
Please leave us a rating or review RateThisPodcast.com/creatingafamily
Please pardon any errors, this is an automated transcript.
Dawn Davenport 0:00
Welcome to Creating a Family talk about foster adoptive and kinship care. I'm Dawn Davenport. I am both the host of this show as well as the director of the nonprofit creating a family.org. Today we're going to be talking about getting a diagnosis for prenatal alcohol and drug exposure. We'll be talking with Dr. Yasmin Senturias. She is a developmental behavioral pediatrics specialist with developmental and behavioral pediatrics of the Carolinas, and that's located in Charlotte, North Carolina. She has 28 years of experience in developmental pediatrics and prenatal substance exposure. She worked with the American Academy of Pediatrics on their very helpful FASD toolkit. We're also doing something a little different. We are having Sarah Moser, who is on the creating a family staff join me in the posting responsibilities here. Sarah is the prenatal substance exposure specialist with creating a family. She is the main force behind our evidence based prenatal substance exposure training for parents and a new training we're working on which is a prenatal substance exposure training for child welfare staff. And prior to joining creating a family she had 35 years of experience as an elementary school teacher. Today we're going to be talking about fetal alcohol spectrum disorders and prenatal drug exposures. There is a great deal of overlap, partly because of dual exposures. And for other reasons as well, that we'll get into, but we're going to keep both alcohol and drugs separate for today's discussion. And contrary to public opinion, and the media, alcohol causes the greatest damage. So we're going to spend more time on that prenatal exposure. But we'll begin with prenatal drug exposure. And we will end with a discussion of dual exposure to both alcohol and drugs because that is very common. So that's kind of the layout of how we're going to do it. Dr. sinteres, thank you so much for joining us today. Of all the things in prenatal substance exposure, it seems to me that the ideas of diagnosis is some of the most difficult I find so much confusion, honestly, with myself but also with the parents we talk with. So I am very excited. I know sir is as well. As we were working on the outline, I kept saying we need to cut it down, we need to cut it down and Sarah kept saying we need to add we need to add. So anyway, we're very excited to be talking with you today. We're gonna start with prenatal drug exposure. I'm gonna give a little background and then jump right in. Prenatal drug exposure includes the use and pregnancy of both legal and illegal drugs and includes such drugs as you would think opioids, methamphetamines, cocaine, crack marijuana, nicotine, either smoked, or vaped. But it also includes drugs used to treat substance abuse disorder, including methadone Bureau for nephron, which the brand name is Suboxone? So that's what we're going to start with talking about. Dr. Senturias, does the impact differ depending on what drug the child was exposed to?
Speaker 1 3:01
Yes. So Hi, Dawn, good morning. So it would seem that it would normally just be kind of cut and dry, you know, whether a child was exposed to one drug versus another, you know, the reality is that we won't necessarily know what specific drugs a child was exposed to. It's so true. And so the challenge, it's almost really kind of like peeling the layers of an onion or just knowing that the whole onion exists, knowing that everything can happen together. But there are differences. What we do know the number one thing to know about is that alcohol, which is 100%, legal and advertised very heavily, actually causes the most damage to the infant's brain. And of course, can also cause damage to other body parts and growth, as well as some facial features are really hallmarks of this diagnosis as well. Now, in terms of drugs, right, so you're talking about drugs, when we talk of opioids, these are the drugs that can certainly cause the neonatal abstinence syndrome, and or really the neonatal opioid withdrawal syndrome. And this can manifest in terms of Earth type issues, such as you know, the tremors, irritability, and of the poor sock or sleep, you know, the newborn nursery nurses do not want these infants disturbed because of all these problems when they are woken up. So there is a difference in terms of say, I would imagine withdrawal from opioids, possibly from neonatal withdrawal from other drugs, but for the most part, when we talk about neonatal abstinence syndrome, most of it is concerning opioid effects. What we don't know is that if in the early newborn period, some effects of alcohol are in there, but we just can't really quantify Because I think the biggest bone I will have to pick for all the obstetric units is that we are really not asking about alcohol exposure. Let's
Dawn Davenport 5:08
save alcohol because we're going to jump into it because I couldn't agree with you more. In the past, we often would see neonatal abstinence syndrome NAS, but now we see even perhaps more often, neonatal opioid withdrawal syndrome now is in ows. Is there a difference between the two? Well,
Speaker 1 5:25
the only difference is that neonatal opioid withdrawal syndrome is really just concerning opioids. Now, neonatal abstinence syndrome is all of the drugs that can possibly cause abstinence. But for the most part, it is really still opioids. So I would say that it's often used interchangeably,
Dawn Davenport 5:46
right? Because that's where I'm really seeing it. You've described the short term impacts, and they are short term, they NAS and now's when you're going through it as a parent, or as a neonatal nurse. It doesn't feel short term, but in reality, it doesn't last long in the life of a child. We've done a lot of shows and some of the more longer term impacts. But can you just briefly summarize what some of the long term impacts would be of exposure to opioids, meth, cocaine, crack, whatever.
Speaker 1 6:16
So let's talk about opioids. So for example, heroin, there couldn't be for the baby or the child, you know, long term effects on memory, there could be effects on attention and concentration, as well as decision making and judgment and executive functioning. There could also be effects on cognitive flexibility later on. So looking at all that. I mean, that's a pretty significant number of effects. We see the same for fentanyl. I would imagine that there still quite a bit of fentanyl exposure, having some similar properties. I would say that there would have to be similar things, but the biggest reported thing is really for heroin.
Dawn Davenport 6:57
Gotcha. All right. And would we see substantially different long term impacts with methamphetamines, cocaine? I'm gonna come to marijuana and nicotine in just a minute. But let's talk about the other more commonly abused drugs, including meth and cocaine. Right.
Speaker 1 7:13
So with cocaine, and you know, mass, there's the risk of the preterm birth, low birth weight, I mean, those kinds of things that, of course, will also impact right, your overall growth and development. I mean, just thinking about premature itself, but you know, attention hyperactivity, all those can actually happen, like, in fact, for cocaine, there's the poor judgment and risk taking for the infants or that children who were exposed to cocaine in utero, we're talking about attention and concentration memory is some similar things, but including judgment being impaired and increased risk taking, as well as like slow processing speed for cocaine. Okay,
Dawn Davenport 7:53
gotcha. And are the impacts less severe for illegal drugs such as nicotine through cigarettes, or vaping? Or marijuana, which is legal, some places and not others?
Speaker 1 8:03
Well, nicotine can cause quite a bit of things. I mean, we're talking about like, again, low birth weight and preterm birth. Well, there's also the sudden infant death syndrome that really isn't less dangerous. Right, right. And I think that there still are pretty significant effects. But when we talk about fetal growth, right, that's the first thing we can talk about fetal growth for nicotine, and then their feeding difficulties, developmental delays, I don't know that it's necessarily comparable, I think, to the effects of cocaine, when it comes to like self regulation. I think the self regulation is much worse for cocaine, for example, and probably some of the cognitive effects. But I don't know that there is what I would call a direct comparison. Like you would say, oh, it's better if it's a little less if it's just nicotine, but just the studies look like there's a bit more for those other drugs, like I'm talking about cocaine, and heroin. Okay, so worse for those. Yeah, I would say a bit worse from what I have seen in terms of the studies, how that could be quantified. I, it's a little complicated, because I don't believe we study it that well.
Dawn Davenport 9:13
Well, I would agree. Yeah. And what about marijuana, which, because of it becoming legal, I think people are assuming and women are assuming that because it's legal, that it's not going to hurt the fetus in pregnancy. Is that true? Well, it also
Speaker 1 9:27
affects fetal development. And, you know, there's the growth restriction that can still happen. Again, low birth weight, things like that smaller head circumference. I mean, well, that's not good, right? Because if it restricts the head circumference, we know that there's going to be effects on the development of the brain. And here's the thing, it does cross the placental barrier, kind of like alcohol and so sometimes it's not like as a parent I would imagine for fetal alcohol because it's like a really small molecule across the brain barrier, but it can in the school age period costs things like ADHD symptoms, you know, impulsivity, hyperactivity, attention deficit. So I think it's still not something that we could take lightly, for sure. And
Dawn Davenport 10:11
then the last thing I want to just briefly touch on is that we have been told that drugs used to treat substance abuse disorder, methadone, be for an orphan, those drugs do have a deleterious impact, but because the dosage is controlled, and it's under a moderated circumstances, it is still better for the fetus and ultimately for the child. Is that correct?
Speaker 1 10:35
That's a complicated question. I think that it is not necessarily less complicated for the fetus. But it modulates the effect, or the mother, which helps her not have as much of the dose of the drug because you know, it's basically a very controlled program when you do the buprenorphine and the methadone, so it could still cause the neonatal abstinence syndrome and things like that. But at least for that the mother is more protected, has a more regulated and Vironment during pregnancy. So what's not to keep increasing dose of, you know, said opioids, okay, so just kind of to talk about that a little bit more, they could still have the neonatal abstinence syndrome, or NAS or nows. And then also, the other thing is that they can still kind of really be, you know, implicated and things like preterm birth, and honestly, they still have things like smaller head circumference, things like that. So it's not necessarily much safer, but I just know that we can keep both mother and baby safer this way. I think it's the escalation of the dose that would be prevented. And from that standpoint, I would think that that would have to be more protected for the baby. Yeah, healthier mom, perhaps because it's a setting that doctors are very aware and are regulating. Yeah, that
Dawn Davenport 11:58
makes sense. Yeah. So it makes sense that no one is saying it is good. But if you had the option between a mom who was not in treatment, and a mom who is in treatment with one of the drug abuse disorder medications, we would choose that. Now would be a good time for me to interrupt quickly, this wonderful interview with Dr. sinteres, to tell you about a new training being offered by creating a family on prenatal substance exposure, and that would include exposure to both alcohol and drugs. It is an unbelievably good training. It is a facilitated interactive, live training done online, and you can access it at Bitly slash prenatal dash exposure, dash training, that's bi T dot L y slash the words prenatal dash exposure dash training. It is also accessible from our website, creating a family.or by hovering over the word training at the horizontal menu at the very top, and you will see it there. I cannot recommend this training enough. It is four and a half hours over three days. It's broken out by age of the child. It is just as one of the things I'm most proud of that we've done here at creating a family. So check it out. All right. Now I'm going to turn it over to Sarah Moser to talk about how do we diagnose both short term and long term prenatal drug exposure?
Speaker 2 13:26
So Dr. Satorious, what are the medical disorders in the Diagnostic and Statistical Manual for prenatal drug exposure?
Speaker 1 13:35
That's a great question. So I do want to say that there really isn't a true DSM diagnosis code for intrauterine drug exposure. I mean, there is an ICD 10 code. So you could use particular codes, I mean, we as medical providers, so as a physician, I would use an ICD 10 code. That's the code that insurance companies would typically accept. So that code or in uterine drug exposure is P zero 4.09. For just the drug exposure, and for alcohol exposure, it will be p zero 4.3. So that's just for exposure, not necessarily like having a syndrome, if that makes sense. There is a DSM code for neurodevelopmental disorder not otherwise specified, which is three one 5.8. So that presupposes a neurodevelopmental disorder. Typically that is reserved for say, fetal alcohol spectrum disorder in the DSM, you know, the neurobehavioral disorder associated with prenatal alcohol exposure, but there really isn't a true DSM five code for intrauterine drug exposure. So like FASD is an actual umbrella of terms in FASD. There are diagnosis codes for all of them. Well, that's QA 86.0 for ICD 10. That's for fetal alcohol spectrum disorder, but there really isn't anything for intrauterine drug exposure. There's no term like that. specifically Interesting. Okay,
Speaker 2 15:01
so in thinking about NAS and no W s, do those diagnoses have to be made at
Speaker 1 15:08
birth? Yes. For the neonatal abstinence syndrome, not the long term. If we're talking neonatal abstinence syndrome, well, there's certainly codes for that those are actually diagnosed at birth, right? Like, there's no way that those aren't diagnosed at birth, it happens in the first 2436 hours of life, up to even 72 hours after birth. Or you can diagnose this. So I guess from that standpoint, you could use for opioid withdrawal into newborn p 96.1, as an ICD 10 code. So there is a code for neonatal abstinence syndrome, or I guess, opioid withdrawal or Knouse. But it's p 96.1. There really isn't a DSM code. I don't know if you have heard anything specific to that, but I have not seen it, nor found it in any of my readings, because I know I looked that up because I was like, I was wondering, too. So let me just clarify. So ICD 10 codes are medical codes, right? DSM codes are mental health codes. And so what's interesting is, you know, in the DSM, you will find things like autism neurobehavioral disorder associated with prenatal alcohol exposure, you will see things like intellectual disability. So it's talking about, in a way neuro behavioral phenotypes and psychiatric diagnoses. But it's not talking about reasons for sad diagnosis. That makes sense. It's not like looking for etiologies. It's just talking about the behavioral or neuro behavioral phenotype. So I would not imagine that there would be a diagnosis for Sunni natal abstinence syndrome, because it's really more like a medical diagnosis in the DSM. Okay,
Speaker 2 16:45
thank you. That makes sense. So the families with whom we were our foster adoptive and kinship families, and oftentimes these families are bringing children into their care, not at birth, but long after birth. So it can be at the age of four or eight or 12, even, and they may see symptoms common to prenatal exposure. But what options do they have as far as a diagnosis is, if there was nothing in the child's medical history that was made at birth? It's many years after the fact how can they see a diagnosis of prenatal drug exposure? So
Speaker 1 17:25
there isn't, as I said, there isn't any specific diagnosis for that. But remember, I'm a developmental behavioral pediatrician. And it is my job to look at the child as a whole, their development, their behavior, their neurological functioning, as it would affect development and behavior. And the diagnoses vary. So fetal alcohol spectrum disorder is one possible outcome. But obviously, if we do not know about alcohol exposure, or we do not see the typical features of fetal alcohol spectrum disorder, and that cannot be diagnosed Now, are there other things so well, one, the cognitive functioning was affected, and they could have intellectual disability they could possibly have ADHD as the other one if it was like having the specific symptoms. So we're talking, we diagnose DSM five wise and also ICD 10. It showed like code so we can diagnose both. There could also be learning disabilities, speech language delays, there really isn't any fetal drug exposure, I could always say in utero drug exposure, but that doesn't help a child per se in their school, there would have to be one specific code that would one address their IEP, right, like try and find a way to serve them. Actually, one of the ways that we can always advocate is say, this is a child who has had in utero drug exposure, if there are indeed neurodevelopmental issues, okay, and the child was drug exposed, I would imagine that I could potentially say three, one 5.8 neurodevelopmental disorder not otherwise specified. Right. So that could be a code from ICD 10, which could maybe help them as we seek for treatments later on. But what's interesting is there really isn't a rulebook for fatal drug exposure, like how to treat them. It's so interesting. Yeah, so it's really more when I see children who are drug exposed and have a very similar phenotype to my patients with fetal alcohol spectrum disorders, I treat them like they have the alcohol spectrum disorders. I provide the strategies because we have a wealth of strategies for fetal alcohol spectrum disorders versus drug exposed infants. So I know that that's not the most satisfactory answer for now. But that really is the only way that we can help so we look for the symptoms like anxiety is a symptom and we shouldn't minimize the mental health disorders that co occur with these make things a little bit more challenging. Overall, my own research on psychotropic medication use in fetal alcohol spectrum disorder versus like mental health diagnosis actually shows that sometimes even without the mental telehealth diagnosis, you could have quite a bit of medication used into the alcohol. But there is such a high comorbidity with fetal alcohol and mental health diagnosis and the combined effect. And I'm actually extending this to the drug expose individuals or infants or children. The combined effect when I see it in clinic is much worse. The combined effect of having some kind of mental health diagnosis, say drug exposure, or alcohol exposure is much worse than any one of them alone. Yeah,
Speaker 2 20:27
and I think they're all you can't extract one from the other, that you can't talk about one without the other. So I think another issue for parents and caregivers is the scarcity of clinics that specialize in diagnosis and treatment. And knowing that there is a scarcity, what other types of doctors or medical professionals or professionals can make a diagnosis? And can you talk about maybe the difference between screening for prenatal exposure versus a firm diagnosis? Well, the screening
Speaker 1 20:59
for prenatal exposure may just involve like talking to the mom asking the questions, and then you know, like knowing that the child was exposed, but a formal diagnosis of while there is nothing for drugs, so I'll just talk about alcohol, fetal alcohol spectrum disorder would have to be made. If it's a neurobehavioral disorder alone, which means there isn't any physical effects, a psychologist or licensed psychologist should be able to make that diagnosis. However, there's still a caveat. You know, I think that as we look at all individuals, we need to think about things like genetic disorders as a morbid condition. So a lot of times, I think that there needs to be a second appointment, at least with a medical professional to rule out those genetic issues, not to say that the genetic issue would, per se override the exposure to substances, but that it would have to be included as part of the reasons for a child's clinical presentation. So what what I believe is that there has to be a collaborative relationship between a medical professional and a psychologist. So the psychologists would look at the neuro behavioral challenges such as poor self regulation, neurocognitive problems in IQ, executive function, memory, visual spatial skills, learning adaptive skills, and then they would let the medical professional know whether a medical doctor or pediatrician developmental behavioral pediatrician psychiatrist or a nurse practitioner or physician assistant with training in FASD diagnosis, and they would share findings with each other so that one would cannot maybe look at the genetic issues or anything like that. That could be part of the overall clinical picture, maybe even trauma, it look at all that in conjunction with each other because I've never been one to just look at, say in my FASD clinic. Oh, yeah. This is only a FASD. So when somebody sees me for developmental and behavioral evaluation, it is never just okay, is this FASD or not? And then they come out, right, like just kind of knowing yes or no, I think the goal of most cases of diagnosis, it should be diagnosis, assessment, evaluation, and then treatment considerations for what is going on. And
Speaker 2 23:17
I would think, too, that the parents or caregivers input would be a part of that collaborative effort. Absolutely. Because they would have a lot of knowledge and what they're seeing presenting in the child, so that I think collaboration amongst all of the professionals, as well as the parents would be important,
Speaker 1 23:36
or that the parents would provide the history. I mean, they have the lived experience, and it's very important to know because it will actually, there are some parents who may know more about their provider when it comes to the effects of various substances, not just on their child, but in general, because, you know, this is, in a way some kind of a forgotten area when it comes to medical professional learning. And I think it's starting to get remedied in short order, the more recent years, but in the past, you know, Alcohol Spectrum Disorders was just thought of as sort of like an issue for face and groves and head size. So there's been a change. I
Dawn Davenport 24:17
also think that in the past it was also viewed as other people's problem, you know that okay, it is only for people or is only I don't think that people realized the extent and that this is a problem that is not affecting just one segment of our population. Now would be a great time to interrupt to tell you about the free courses we are offering sponsored by the jockey being Family Foundation, we have 12 courses, they are directly related to what you experience as parents. You can use them as continuing ed if you need them as continuing ed, but even if you don't, they just help you be a better parent, you can check them out at Bitly slash J B F support, that's bi T dot L y slash jPf support. I'd like to jump in to FASD. Now fetal alcohol spectrum disorders. As you can see, it's really hard from our discussion so far to separate drug exposure and alcohol exposure, because there's so much overlap and because there's more information really on fetal alcohol spectrum disorder, let me give a little bit of background just to get us all on the same level here. So we're talking about what we call FASD. Fetal Alcohol Spectrum Disorders. As Dr. Centuria said, it's an umbrella term describing a broad range really of adverse developmental symptoms that can occur when exposed to alcohol during pregnancy. Some stats are it's estimated that one to 5% of children in the United States may have an FASD. And as far as how common is drinking in pregnancy, the CDC they think approximately 12% of pregnancies may have alcohol exposure. As the name implies, FASD is a spectrum disorder meaning that a child may have a combination or not just a childish and say that a child or an adolescent or an adult, because it's a lifelong issue, you do not outgrow the impact of the brain damage caused by exposure to alcohol. But the degree of impact is along a spectrum, and can be a combination of physical, as you've mentioned, neurodevelopmental learning behavioral problems, and each can be indifferent ranging of severity. So a question of severity is, is the impact or the severity of impact on the child the youth are the adults directly correlated to the amount of alcohol the mother consumed during pregnancy?
Speaker 1 26:49
That's still a complicated question. But generally, yes, the more exposure, theoretically, the more effects there would be on an infant, I mean, the higher the dose, possibly the more affected however, there's genetics involved, right? There's metabolism for the mother, there's blood supply to the baby's brain and whatever else is happening during that time for the mother. So in general, yes, with everything else being equal dose would probably be equal to more effects. Okay, so higher danger exposures cause more effects than just chronic long term exposure, though, it's not necessarily like better right to have the chronic long term exposure. Binge drinking is particularly problematic, because it's like a big dose all at once, in one little period of time. And like I said, you know, alcohol causes effects on the brain being a small molecule crossing the blood brain barrier, which can cause death of cells, okay, which can cause problems with myelination, which can cause problems with the synapses, or like the connections between the brain cells, disrupting that and causing problems with slower processing speed problems with just having the brain cells get to the right areas of the brain where they should be going. All of it can cause pretty significant effects. So dose, it's one of the things timing could probably be also a problem. But again, the biggest thing to say, if we had to say one thing is that there is no safe kind, no safe time, and no safe amount known for prenatal alcohol exposure.
Dawn Davenport 28:28
And we can't say that enough. Absolutely. I'm going to list some of the actual diagnoses or what I think are diagnoses that exist along the spectrum of FASD and an s how these differ. As far as I know, these are the diagnoses that are available one fetal alcohol spectrum, which is sometimes see it written as fas, and then you have partial FAS, and then you have alcohol related neurodevelopmental disorders, sometimes you see that AR nd then you also have alcohol related birth defects, sometimes AR BD because we have to have our acronyms here. And then you can also see neuro behavioral disorders associated with prenatal alcohol exposure. First of all, which one is the most common one that will be diagnosed? And what's the difference in these different diagnoses? Well, that is
Speaker 1 29:20
very interesting. Thank you for mentioning all of them. Well, number one, there are different diagnostic criteria out there. The ones that you have mentioned, are typically under the National Institute of Alcohol Abuse and Alcoholism, the NI triple A criteria that would they call the whole new criteria for diagnosis and when I say that, that's below alcohol syndrome, partial FAS, alcohol related neurodevelopmental disorder and alcohol related birth defects that would be the NI triple A or the homie criteria when it comes to neuro behavioral disorder associated with prenatal alcoholics. Those are MDPE that is in the DSM five. Okay, that is the most comparable to alcohol related neurodevelopmental disorder. So it's a little bit like a lecture to actually differentiate all of this. But yeah, for fetal alcohol syndrome, typically what you will need is the kind of the all of the above phenomenon like we should have the facial criteria met. And in a triple A criteria, you need one of the payroll fissures, short palpebral fissures that that upper lip, the smooth philtrum, two out of the three, then you should have some growth deficiency, there shouldn't be an issue with brain growth or morphology, like structural brain abnormalities or seizures that cannot be explained by anything else. And then the neuro behavioral impairment, you don't need all of that for partial FAS, but you could just probably have like the facial and the exposure to alcohol either either neurobehavioral impairment, but certainly what's important is this, this specific diagnosis on the spectrum does not dictate the severity. And I actually want to talk about the most common which is alcohol related neurodevelopmental disorder, and neurobehavioral disorder associated with prenatal alcohol exposure, they are the most common. When it comes to talking about neuro behavioral challenges. I think those are the most impactful, yes, you could have structural brain malformations and things like that. But you can see them on the MRI in real life, you've got to still be the one to kind of like live with a person who is experiencing these challenges and be the person who lives these challenges. So the neurobehavioral effects are the really the most impactful, I would say, I mean, there could be the heart defects. Of course, in the most extreme cases, you know, there's death, and there's severe birth defects. But let's just talk about what the most common things are. And I want to actually focus on neurobehavioral disorder associated with prenatal alcohol exposure, because it's probably the most accessible to practitioners, anybody can have the DSM five book with them, right? That is something that psychologists even speech language pathologist now that I've been seeing can kinda grab a hold of and look up neurobehavioral disorder associated with prenatal alcohol exposure, when we talk about that the symptoms consist of four major things. So I use the acronym snap, which is something that my colleague and I kind of worked on to sort of like help make it more memorable for pediatricians and other medical practitioners to just remember the acronym or what's going on in children with fetal alcohol spectrum disorder, specifically in their neuro behavioral phenotype. So snap, right, so self regulation is affected. Neuro cognition is affected, adaptive skills are affected. And then there's the prenatal alcohol exposure. When we talk about self regulation, we speak of three things mood dysregulation, we talk about attention problems, or impulse control problems, but part of self regulation, you know, could also be sleep problems and sensory issues. But the major categories are those three mood, attention and impulse control, then when it comes to neuro cognition, we are talking about the problems in five areas. You know, I think I mentioned it earlier, IQ could be affected. But if IQ is not affected, it could actually be learning. Generally, math is very difficult than reading comprehension and written expression. And then when it comes to executive functions, so that's the third one is executive function. There's the difficulty with like planning and organizing, you know, making decisions day to day life, then the fourth would be memory. And for memory, we are talking about difficulties remembering things that they have learned previously, and not really having a good sort of recollection of directions. And then lastly, there's issues with visual spatial skills, which could really matter when it comes to like remembering where you are in space, kind of like even you know, being able to locate your locker. I mean, that's something that I've seen in some of my kiddos is that they have difficulty with finding their way around. And of course impacts handwriting and even problem solving, believe it or not for those and then of course, the adaptive right, so we said self regulation, or cognitive adaptive would involve things like language development, social skills, development, daily living skills, and then the motor skills and all of those would be the typical things we will see for adaptive skills deficits. And then lastly, of course, the prenatal alcohol exposure.
Dawn Davenport 34:47
Is one diagnosis better than another in terms of getting services or support for this child either in childhood, adolescence or adulthood, or the service is going to come garlis of which of the diagnosis,
Speaker 1 35:02
as long as you have a fetal alcohol spectrum disorder, it doesn't really matter which one, because as I've said, you know, clinically to, you might have an MDPE, or neurobehavioral disorder associated with prenatal alcohol exposure or alcohol related neurodevelopmental disorder, or AR N D. And that actually might be more impactful than a child with full FAS. I mean, when I've seen FAS, I typically seen slightly more severe effects. But sometimes when it comes to behavior, I might argue it could even be a worse outcome, because I've seen children with pretty significant intellectual problems. And of course, they could have behavioral challenges too. But when a person has typical IQ, and severe behavioral challenges and severe judgment issues, sometimes the impact is much higher than a person who had regular full FAS, I mean, so it's, in fact, when you look at the studies that were done by Dr. stripes with which I still kind of really believe it, the full FAS seems to have, quote, unquote, better outcomes. And I really think it's because they are more visible, they just are seeing more, right, like we have to go from the realm of invisibility to visibility, and that is what the FAS Yes, but just from a standpoint of getting services. In many states, it's now just an FASD. And I almost want to argue, use FASD. Just don't be too technical about it, you can and put it on your paper, but most people don't want to say, you know, neurobehavioral disorder associated with prenatal alcohol exposure or kind of like have a very, very long thing. They just kind of want to say FASD.
Dawn Davenport 36:33
Yeah, as long as it gets the services because quite frankly, that's what parents care about is let me get the services for this child. Yes. Let me take a quick moment to thank one of our long term sponsors partners with everything we do at creating a family but specifically this podcast hopscotch adoption has been with us for a very long time because they believe in what we do in preparing parents pre adoption and supporting them post adoption. Hopscotch is a Hague accredited international adoption agency placing children from Armenia, Bulgaria, Croatia, Georgia, Ghana, Guiana, Morocco, Pakistan, Serbia, and Ukraine. They specialize in the placement of kiddos with Down Syndrome and other special needs. And they also do a lot of kinship adoptions. They place kids throughout the US, and they offer home study services, as well as post adoption services to residents of North Carolina and New York. Thanks, hopscotch. And now, I want to turn it over to Sarah to talk about the actual getting a diagnosis. So
Speaker 2 37:41
I think what I hear you saying is the exact name of the diagnosis is not as important as what caregivers do for the child. But I do see some value in parents and caregivers, being aware of those different diagnoses or the names of them just as a comfort level, I'm sure that by the time a parent gets to a diagnostic clinic, they're so invested. And just having a little bit more of a comfort level with being aware of those different terms, I think could be helpful, but it sounds to me like it's most important. Okay, now we know we have this name, what do we do with that diagnosis? So one recurring question that we get and going back to your acronym snap, the P being prenatal alcohol exposure, we often hear from parents that they express concerns to a pediatrician or another doctor about their child, but that they're shut down from pursuing a diagnosis if they cannot confirm maternal drinking during pregnancy. So is that confirmation required to make a diagnosis? It depends
Speaker 1 38:51
if there are two entities in the National Institute of Alcohol Abuse and Alcoholism criteria that can actually be diagnosed without confirmation. And that is fetal alcohol syndrome and partial FAS, or partial FAS sounds very partial, but it really is an FASD. You know what I'm saying? So what I emphasize when I write my report, I say FASD, or fetal alcohol spectrum disorder, and I put it in parenthesis because it sounds so partial, I just want to kind of really say that partial doesn't mean there aren't any problems. In fact, there could still be a lot of nerve behavioral challenges, but it does kind of require the facial features now and the growth, it's going to require similar neurobehavioral criteria to be met plus spatial and growth if there is no confirmation of alcohol exposure. So I really urge all obstetric practices, all neonatal all birthing centers, all hospitals to really adapt that, you know, make sure to ask the question of alcohol exposure because with our current criteria, it's not going to be that easy to diagnose an FASD without it. I don't think that a pediatrician should shut them down, but Because even if it's not diagnosis and FASD, you can say this is an FASD phenotype. That's what I say. Anyway, this is a neuro behavioral disorder phenotype, which is similar to FASD. Therefore, we treat it like FASD. That's how I say it. Although I cannot confirm the diagnosis of FASD. It looks exactly like an FASD. I actually say things like that. So there are strict criteria that I do have to follow. Because as a diagnostician in our FASD clinic, it is still important to be true to the criteria, because there are many things that could cause symptoms like this, although arguably, there is probably only, you know, the fetal alcohol spectrum disorder that has like the snap, and nothing, you know, there's self regulation, or cognitive adaptive, and then prenatal. And then of course, if there are facial features, it adds to it, then if you see that the genetic testing is negative, you're like, yeah, there's clearly nothing else. And there was no trauma, that child was adopted, say, a week after birth, and you could almost like clean up the entire diagnostic conundrum and say, yeah, it's probably this, you know, again, there really needs to still be some level of confirmation. So I try very hard to ask parents, can we find a way to obtain this? Otherwise, I sometimes say if it was a poly substance exposure, I say FASD provisional, it's just very difficult. I have to be honest to the criteria.
Speaker 2 41:26
Sure, isn't helpful. If a family comes with a child to your clinic, and the child is older, say, 789? If the family does have photographs of the child as a baby or a toddler to look at facial features, is that helpful? Absolutely.
Speaker 1 41:43
Absolutely. I think the diagnosis should be sought at any age. Of course, the younger, the better, because I really have seen better outcomes when the diagnosis is made at a younger age, because of anticipatory guidance. So the facial photographs can be helpful. Again, that's just for the face, right? Of course, the growth and I will still, of course, at seven to eight, I mean, look at the face, it could be the face at any point in time. So absolutely. So facial toy wraps with the child not smiling, because the philtrum cannot be properly assessed when the child is smiling. Interesting. Yeah, I would not have thought of that. If families can come with a complete growth chart, including head circumference from birth, that would help I actually asked my team now please ask for this. Because every time I see an individual in my clinic, and then I have to ask for this after it kind of takes a little bit more time and a little bit more back and forth later on when I'm like still searching for the growth deficit at any point in time for the head circumference at any point in time, because it could be at any point in time thing, including the face. Of course, the facial photographs at any point in time would I would also be absolutely welcome. So yes, tell your families that is one thing that could be helpful. Plus, absolutely confirmation.
Speaker 2 42:54
Sure. Yeah, complete girls chart from birth, that's very helpful. What I was going to add is that, according to the CDC, diagnosis before the age of six is most ideal for a child. But there are also lots of stories about people being diagnosed or seeking a diagnosis as adults. So it's never too late to seek that diagnosis. Adding to the confusion about much of this are common misdiagnosis. So can you talk a minute and share what other common misdiagnosis can be made either in place of or in conjunction with prenatal substance exposure?
Speaker 1 43:32
My favorite is Oppositional Defiant Disorder. You know that that's the first one that people think of because at first glance, some of the children do look, quote, unquote, defiant. And a lot of times that Defiance is bred from years and years of not being understood neuro behaviorally. And so that's one ADHD I think, is just going to be a common comorbidity or a co occurring diagnosis, I don't think it's going to be a misdiagnosis. But I would say that it's this is what you call an ADHD plus plus, you know, something else is going on beyond this, because often medication after medication feels to treat well you can't treat a learning problem with that, or nor the severe dysregulation sometimes cannot be treated by medications alone, but by providing the correct structure, the correct environmental modifications for the individual, we call it an IEP for the environment, you know, almost like you've got to change the environment, even parenting styles that are more accepting that our understanding of the neurobehavioral challenges would be necessary. Thanks.
Speaker 2 44:38
What about families that for whatever reason, cannot or do not pursue a diagnosis? Because we know that there's a scarcity of resources for families, we know there's a scarcity of clinics, and there are lots of reasons why someone might not be able to pursue a diagnosis. Yet we know that those children were in affected by prenatal substance exposure, what would you say to those families?
Speaker 1 45:03
I would say, educate yourself about this diagnosis. You know, the CDC, the AAP FASD toolkit is available for them CDC website, the FASD. United website is also a good one. There are a lot of resources, there's even due to learn that comm do with the number two, learn that calm has a lot of like strategies for families, including perfect alcohol spectrum disorder. There's the very helpful book all about me FASD. It's currently searchable. Like, if you just put all about me FASD, we'll find a PDF of it, it could be a very helpful like starter to what does the brain look like? What are the challenges that are often seen, we did a study using that book that we created in Kentucky, our FASD coordinator, Laura Nagel graded in Kentucky, and after a few sessions working with parents on that book, they found that they were able to understand their children better and it looked like the behaviors of the children improved after a year. So I believe that it really is because the parents actually understood the children better and were able to provide for their needs better. So I agree with you more Yes. So that, of course, trying differently rather than harder, because they're probably tried everything right. So try that book by Diane Melbourne, that's a really good book. So they should pursue educating themselves, I would say getting an occupational therapist to work on self regulation. It may be that they didn't actually fully seek the diagnosis. But if they know things that they could do for a child, it's still better than having nothing. But I would say seek the diagnosis. I think that it's worthwhile, even if you do not actually get the diagnosis, because I think knowing the strategies that can be helpful to your child can absolutely change his or her life. Yeah,
Dawn Davenport 46:48
I do have one additional question. And that is, do you need a referral from your pediatrician to get an appointment with a specialty clinic? Generally,
Speaker 1 46:57
yes, if it's a developmental and behavioral clinic, so for example, for our FASD clinic here at atrium health, we do require a pediatrician or nurse practitioner, you know, the primary care provider to send a referral in Yeah, that is a requirement for our clinic and for many clinics, I would say,
Dawn Davenport 47:14
okay, that makes sense. Let me pause here for a moment to tell you about the creating a family monthly e newsletter, we curate the best resources that we found that month that's directly related to foster adoptive and kinship parents and professionals. We have two different newsletters, one for professionals and one for parents. And for subscribing, you get a guide. Right now the guy we are offering is one prenatal substance exposure which is directly relevant to this interview. It is a wonderful guide that covers so much of what you need to do if you suspect your child or children that you work with might be prenatally exposed to alcohol or drugs to sign up for the newsletter. It's free. I should have mentioned that to sign up for the newsletter. If you go to Bitly slash guide. The number two prenatal exposure, if you're desperate and can't remember all that because you're in the car, just remember creating a family.org/newsletter Just to tie things up, because I promise it's at the beginning, dual exposure to alcohol and drugs. I think that it is common and that the effects are synergistic, meaning that it's worse for a child who has been duly exposed. And the other exposure. That's not the correct word, but that we see in a lot of the kids that we work with is trauma. Can you just as your parting words, talk about the kids who have had traumatic early life experiences and have been exposed to alcohol and or drugs? Is that the ultimate double or triple whammy? Are you able to tease out the impacts? I
Speaker 1 48:54
think rather than teasing out the impacts, I think it's important to consider everything together. I think their recovery from trauma is worse when you have had a prenatal alcohol exposure. We know that trauma can affect emotional regulation and even cognitive development. We know that FASD causes the worst neurocognitive effects, but having the combined effect of trauma and alcohol and drug exposure. I mean, it just makes for just a much more difficult experience for the child and the family and would require a full psycho educational assessment looking at the child's emotional condition course their self regulation or cognition and adaptive skills. And then a therapist who is able to support not just understanding the neuro behavioral differences and how to help the family provide the right environment, but also a therapist who is trauma informed. I think it's so important that we understand that we don't exist in a vacuum I mean and and nothing. Nothing just happens all by itself. All of us are products of our environment. Our job addicts are whatever we were exposed to in utero. So I think that we have to consider everything together versus separately. Yeah. Well,
Dawn Davenport 50:09
thank you so much, Dr. Yasmin Cenarius, for talking with us today about getting a diagnosis for prenatal alcohol and drug exposure. As I said before, we really need this information out there to the parent community, and I'm so appreciative of your time. Thank you. You're very welcome.
Transcribed by https://otter.ai