Solid Foods, Window Blinds, Genetic Counseling – PediaCast 393
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Show Notes
Description
- More News Parents Can Use this week as we cover starting solid foods for babies, window-blind safety, anxiety with chronic medical conditions, and the ins and outs of genetic counseling. We hope you can join us!
Topics
- Starting Solid Foods
- Window-Blind Safety
- Chronic Illness & Mental Health
- Genetic Counseling
Guests
Links
- Early Peanut Introduction – PediaCast 367
- Early Peanut Introduction – 700 Children’s
- Choking Prevention (AAP)
- Cancer Genetics Clinic at Nationwide Children’s
- Genetics and Metabolic Clinic at Nationwide Children’s
- National Society of Genetic Counselors
- Becoming a Genetic Counselor (NSGC)
- Find a Genetic Counselor (NSGC)
Transcription
Announcer 1: This is PediaCast.
[Music]
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone, and welcome once again to PediaCast. It's a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio.
It's Episode 393 for January 11th, 2018. We're calling this one ÒSolid Foods, Window Blinds and Genetic CounselingÓ. I want to welcome everyone to the program. We have a news parents can use episode lined up for you this week and we also have an interview segment of it later in the program. I'll get to the full line up in just a moment.
First though, you know sometimes it's good for doctors and other healthcare providers to be the patient. You know, to experience the healthcare systemÑthe human experience of the healthcare system from the perspective of the patient in the exam room. And, I think it's important because it reminds us at what folks really go through as we, doctors and other healthcare providers, attempt to navigate our workday. You know, just like any other job, healthcare providers are trying to get through their day, you know, or night. You know, if you're working in a hospitalÑemergency department. And, many days you're just trying to make it through so you can get home to your family, your hobbies, your sleep, whatever it is that you go home to, you're just trying to get there. And the clinic, a hospital full of patients is sort of a barrier to your goal.
00:02:00
And when we begin to view our workday like that, which we're all prone to do, you know, regardless of our line of work. You get in to the day-to-day routine; you become task-oriented, so you can make it home. You know, only to come back and do it again. The problem with this though in medicine and, you know, other service-related fields, those daily tasks, you know, those barriers to getting home, they're people and they're just like you and me.
So, I think it's good for physicians and others in the healthcare field to experience the patient side of things. It provides us with the opportunity to sort of nurture our empathy, restores compassion, tends to brighten our bedside manner, and I think it can make us better healthcare providers if we let it.
Now, don't get me wrong. Of course, I don't wish ill will on anyone. You know, I'm not saying that all doctors need to be stricken by complex medical conditions although I will say and I've shared this before on this program; having glaucoma and the fear of blindness one day in the future and having gone through several eye surgeries a couple years back. Long waits in the waiting room, anxiety over what my next eye-pressure reading is gonna be, anxiety in pre-op before the anesthesiologist puts me under again.
I think those experiences have made me a better doctor and in a way, I'm thankful for those. Of course, it doesn't have to be something like glaucoma or diabetes or cancer. You know, a simple gastrointestinal virus here and there, you know, which I had between Christmas and New Years; it reminds you what nausea feels like. You know, how many times as medical providers and particularly in pediatrics, do we see kids with nausea and vomiting? Okay, here's another one, doses of Zofran, some sips of fluid and off you go. But when you get to experience it yourself, it's like, ÒOkay, I get it. This stinks. Let's get you better.Ó
00:03:59
It changes your attitude a bit and I think everyone benefits. Now, I got another big dose of this a few nights ago when I dropped a glass, cut my hand, needed stitches and a tetanus shot. I know I've not exactly had the best of luck lately. But, it was a real eye-opener of what my patients go through when they come in with a wound that needs stitches which occurs with great frequency in my line of work in the emergency department in our urgent care centers.
So, I'm keeping a healthy attitude, I think, trying to; looking at the bright side which is experiencing life as a patient and that really can do a doctor good and I know there are many medical providers listening to this program. So, I would say, when illness or injury comes your way, embrace it. You know, don't forget it. Let the experience change your perspective as we seek to improve the health of those we serve in our everyday work.
Alright, so off my soap box here. What are we talking about today in our pediatric program for parents? We're gonna discuss starting solid foods. So, when is the best time? What should you give? What should you avoid? And, what do you do when grandparents or great-grandparents give you recommendations that don't exactly line up with what you child's doctor is telling you to do? We'll talk about that.
And then, window blind safety. Kids can become entangled in the cords of window blinds and that can lead to strangulation and even death, it happens. So we'll talk about ways to make your window coverings safe for your family, that's coming up.
We'll also talk about chronic illness and mental health. You know, having a chronic medical condition can easily lead to anxiety as I sort of eluded to a few moments ago with my own experience with glaucoma. Sometimes it leads to depression, and we can get so focused on managing the physical ailment that we forget to address the mental health issues, which often come along for the ride.
00:05:58
So, we'll raise awareness there and talk about ways to meet those expected mental health issues with supportive care when chronic illness strikes. And then finally, we'll wrap up the episode with an interview. We're gonna talk about genetic counseling with Elizabeth Varga and Maggie Stein. They are both genetic counselors here at Nationwide Children's Hospital. And, we'll cover the who, what, when, where, why and how of genetic counseling so that too is coming your way soon.
Don't forget that if there's a topic you'd like us to talk about, you have a question for me or you wanna point me in the direction of a news article, a journal article, whatever it is, it's easy to get in touch. Just head over to pediacast.org, find the contact link and use that form to send in your question or comment or suggestion and we'll try to get your thoughts and ideas on the program.
Also, I wanna remind you the information presented in every podcast here on PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So, if you have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination. Also, your use of this audio program is subject to the PediaCast's terms and use agreement, which you can find at pediacast.org.
Let's take a quick break and I will be back with news parents can use along with a chat with our genetic counselors. That's coming up right after this.
Music
00:07:50
Dr. Mike Patrick: More than half of babies are currently introduced to solid foods and/or complimentary drinks which includes anything other than breast milk or infant formula sooner than they should be. This according to the US Centers for Disease Control and Prevention and a study published in the Journal of the Academy of Nutrition and Dietetics, it's the first study looking at food introduction practices in a nationally representative group of US infants. Researchers found babies who were never breast-fed or breast-fed less than four months were most likely to be introduced to foods too early. This is an important finding because solid foods and complimentary drinks need to be introduced at the proper time to get the most benefit from breast milk and/or infant formula.
Chloe Barrera, lead investigator for the project, says introducing babies to complimentary foods too early can cause them to miss out on important nutrients that come from breast milk and infant formula. On the other hand, introducing them to complimentary foods too late has been associated with micronutrient deficiencies, allergies and poor diets later in life.
So when should solid foods and complimentary drinks be introduced to babies? Current recommendations say around six months of age. Investigators analyzed data from the 2009 to 2014 National Health and Nutrition Examination Survey, which assessed the food intake of 1,482 children between the ages of 6 and 36 months by conducting household interviews with the parents.
The survey asked how old infants were when they were first fed anything other than breast milk or infant formula which included juice, cow's milk, sugar water, baby food, table food or anything else the infant might have been given, even plain water. Nearly one-third of babies were introduced to solid foods and/or complimentary drinks at or around the recommended 6 months of age. Of course, that means two-thirds did not follow the current recommendations.
00:09:49
16% started these items, solid foods and complimentary drinks, before four months of age, which is way too early, and 38% at four to five months of age, again, too early. Around 13% of parents started solid foods and complimentary drinks too late at seven or more months of age.
Now, to be fair, over the last 60 years, recommendations for when to introduce complimentary foods have changed dramatically. The 1958 guidelines suggested solid foods in the third month of life so age 3 months. The 1970's brought a delay until age four months and the 1990's pushed the introduction of solid food out to six months. These changing recommendations have influenced many past studies of infant nutrition, most of which show a general lack of adherence to current professional guidelines, whatever they may be.
The US Department of Agriculture, USDA, and the Department of Health and Human Services are currently developing the first federal dietary guidelines for children under 2 years of age, which will be released in 2020. Investigators say efforts to support caregivers, families and healthcare providers may be needed to ensure that US children are achieving the latest evidence-based recommendations for the proper timing of introduction to solid foods and complimentary drinks.
So, the take home message here is breast milk is preferred or infant formula only. It's the only thing your baby ought to get until six months of age and then it's fine to introduce solid foods and complimentary drinks. In fact, it's a good idea to start doing that at six months.
Although, there are some caveats to this. You know, when it comes to the early introduction of peanut products, some would recommend that begin a little earlier at four to six months of age in order to reduce the risk of peanut allergy later in life. If you want more information on introducing peanut products to young infants and which babies are high-risk, which ones need a supervised plan, how that's accomplished.
00:11:52
Keep in mind intact peanuts are a choking hazard, you know, so what sort of peanut products can you use that would be safe to give a baby. And, we covered this topic extensively in PediaCast Episode 367. I'll put a link to that in the show notes for this Episode 393 over at pediacast.org.
It was a whole segment on early peanut introduction. There's also a terrific 700 children's blog post on the same topic if you'd rather read it rather than listen and I'll put a link to that in the show notes for this Episode 393 over at pediacast.org as well.
So, I encourage you to take a look or listen to either both of those. Share Ôem with your own online audience specially if you have an infant at home or you know someone who does. You also wanna avoid food your child could choke on like intact peanuts or little bits of peanut. Other things like other types of nuts, seeds, hotdogs, chunks of meat, cheese or veggies, whole grapes, candy, popcorn, all these things are dangerous for babies because they can become lodged in the airway and that's not good.
The American Academy of Pediatrics has a fantastic resource on choking prevention at healthychildren.org. I'll put a link to that in the show notes as well. And even though complimentary drinks are okay at age six months, talk to your child's doctor. Fruit juices are very calorie-rich so your baby can start to gain too much weight. If your child is underweight, you know, you might not want to overdo the water because your child may need more calories.
So, there are again some caveats to consider. Each child may need a slightly different feeding plan and your baby's regular healthcare provider is the best one to ask about that.
Another take home point from this article, it explains why so many grandparents say start solid foods at age four months because that was the recommendation when you were a baby. We recommended starting cereals at age four months of age, you know, your parents will remember this, grandparents. And then, baby foods after that, especially veggies, then fruits, then pureed meats around six months of age. We had a whole, you know, this is the way that you do it, a whole plan starting at four months.
00:13:57
And for great grandparents, the age that we started was even earlier. So, grandparents and great grandparents, give them a bit of a break if they tell you to start feeding your babies sooner than six months cause that's what they did; that was what was recommended. But just let them know the recommendations have changed and at this point, the collective body of evidence, so this is evidence-based, it's not just arbitrary, would suggest that waiting until six months but no longer, to start solid foods and complimentary drinksÑagain, as long as they're age appropriate, appropriate for the growth and weight of your child and any other underlying medical conditions that could be there.
You wanna take all of that into account and that again is why it's important to see your regular pediatric healthcare provider at two months, four months, six months, so they can kinda gear you up as you think about getting started and then you know if they do need something a little earlier, they'll let you know why and whatÑand what's safe. And by six months to make sure you really are getting into that and onto that plan. So, always a good idea and like everything we talk aboutÑto check first with your child's doctor.
Most homes have them, they help keep our rooms warm or cold and even add a pop of color to tie the dŽcor together but window blinds can cause serious injuries or even death to young children. This according to a new study from the Center for Injury Research and Policy here at Nationwide Children's Hospital, which looked at this ongoing cause of injury and fatality and urges the industry to do more for the safety of our children.
The report published in the Journal Pediatrics found that almost 17,000 children under six years of age were treated in hospital emergency departments in the United States for window relatedÑwindow blind related injuries from 1990 through 2015 averaging almost two per day. While the majority of children were treated and released, there was about one-child death each month, most of those from strangulation when the child became entangled by the neck in the window blind cord.
00:15:55
The dangers come from inter cords such as those found in horizontal blinds and roman shades, operating cords used to raise and lower the blinds, continuous loop cords such as those found in vertical and roll up shades or even from loops created by consumers after installation when cords become knotted or tangled or when they are tied to a stationary object in an attempt to keep them out of the reach of a child.
Dr. Gary Smith, senior author of the study and director of the Center for Injury Research and Policy at Nationwide Children's Hospital says there is a misconception that if we just watch our kids carefully, they will be safe. But even the best parent in the world cannot watch their child every second of every day.
A curious child can quickly get entangled in window blind cord. This can lead to strangulation within minutes and the parent may not hear a thing because the child often can't make a sound while this is happening. The dangers of window blind cords peak between one to four years of age as toddlers gain mobility and become curious about their surroundings. They're able to reach blind cords but they do not understand the danger of strangulation and they're unable to free themselves once entangled. Most injuries in the study occurred while the child was under the parent's care and have been left alone for less than ten minutes while either going to sleep, playing or watching tv.
Dr. Smith says it is unacceptable that children are still dying from window blind cord strangulation. We've known about this problem since the 1940s. The risk reduction approaches offered by the current safety standards are just not enough. It's time to eliminate the hazard. Safe, affordable ÒcordlessÓ blinds and shades are widely available.
A mandatory federal safety standard should be adopted prohibiting the sale of products with accessible cords. However, until all window blinds are cordless, parents should follow these recommendations to reduce the risk of strangulation and child death.
First, replace. The best way to keep your child safe is to replace all blinds that have cords with either cordless blinds, blinds with inaccessible cords or other types of cordless window coverings such as interior window shutters, draperies and curtains.
00:18:04
If you're unable to replace or remove all of your window blinds with the half cords, if you're unable to remove all of them then replace one at a time. Start with the windows in the rooms where your child spends the most timeÑusually bedrooms and living rooms, and replace the others as you can.
Second, retrofit. Retrofit kits to address some types of cord hazards are available from the manufacturer. While the fixes provided by these retrofit kits are a good start, remember that removing corded blinds altogether is the best way to protect your child.
Some of the fixes can provide a false sense of security if they are not used correctly 100% of the time by everyone who lives in or visits your home. You can check window blind manufacturer websites for availability of those retrofit kits.
Now also, move furniture. Cribs, beds couches and other furniture should be moved away from windows so children cannot climb on them to get to the window or window blind cords.
And finally, every room in every homeÑtake these steps in every room of the home. Also, talk to people at other places where your child spends time, such as grandparents' house, childcare, even school and ask them to also remove window blinds with cords to help keep your child safe.
Children commonly show signs of a mental health disorder soon after receiving a diagnosis involving a chronic medical condition. This according to researchers at the University of Waterloo and reported in the open addition of the British Medical Journal. Investigators surveyed children between the ages of six and sixteen years all within a month of their diagnosis with asthma, food allergies, epilepsy, diabetes or juvenile arthritis.
According to parents' responses to a standardized interview, 58% of children screened positive for at least one mental health disorder. This is the first study of its kind to recruit children with different conditions and within a month of their initial diagnosis.
Dr. Mark Ferro, author and professor in the School of Public Health and Health Systems at Waterloo and Canada Research Chair in Youth Mental Health, says these finding show that the risk of mental health disorder is relatively high among children with different chronic physical conditions.
These children experience a significant decline in their quality of life within the first six months of receiving the diagnosis which indicates a need for mental health services early on; six months after the diagnosis. So, six months, the number of kids showing signs of a mental health disorder dips slightly to 42%.
So, what sort of mental health problems are we talking about? Turns out anxiety disorders are most common including separation anxiety, generalized anxiety and phobias.
Alexandra Butler, a graduate student at Waterloo and lead author of the paper says it is possible that the number is higher very early because there are some uncertainty surrounding the prognosis of the chronic medical condition and unanswered questions concerning management and treatment.
00:20:59
It's important to not only identify at-risk children early but also provide these children and family with resources that will support them.
Researchers found age and gender had no impact on the results. The subset of kids self-reported on their own mental health where 58% of parents reported that their child demonstrated signs of a mental health problem; only 18% of kids self-reported their symptoms. This speaks to the need for health professionals to get multiple perspectives when assessing a child's mental health.
So, a take-home point here, lots of kids are diagnosed with chronic medical conditions. You know, things like asthma, epilepsy, diabetes, cancers, juvenile arthritis, even food allergies and many other conditions as well. And, you know, these are chronic conditions that require long-term treatment and usually some life changes. And, immediately after the diagnosis, you know, everyone is concerned with management and teaching related to the newly diagnosed physical ailment, you know, which is to be expected.
But, we should also expect high levels of anxiety among the patients and probably among parents as well. Now, in many cases, I think that education and getting the treatment started, you know, just seeing what life really is like as we treat this chronic condition. You know, a little tincture of time in living with it does just in it of itself help alleviate some of that anxiety which was shown to be true in this research.
But, if the anxiety is particularly high or long lasting or there is concern for depression or self-harm, don't wait for the mental health issue to go away on its own. Those issues may not go away on their own. In fact, they may very well progress and significantly decrease the child's quality of life.
So it's important to get help and support early for symptoms of anxiety or depression in all children. But let's maintain high surveillance for these problems in kids with recently diagnosed chronic medical conditions.
00:22:55
Let your child's healthcare provider know about the symptoms and your concerns. Healthcare providers in the crowd as you initiate treatment for a chronic medical condition. Be on the lookout for anxiety and depression and other mental health disorders. And, be sure to connect your patients and families with the resources they need.
[Music]
00:23:42
Dr. Mike Patrick: We are back. Elizabeth Varga is a genetic counselor with the division of hematology, oncology and bone marrow transplant, also, the Cancer Genetics Clinic and the Institute for Genomic Medicine, all here in Nationwide Children's Hospital. Thanks so much for being here today.
Elizabeth Varga: Thank you for having me.
Dr. Mike Patrick: We're also joined by Maggie Stein, a genetic counselor with the division of genetics and genomic medicine at Nationwide Children's. We're in PediaCast, welcome to you as well.
Maggie Stein: Thank you. Glad to be here.
Dr. Mike Patrick: Appreciate both of you taking time out of your day and stopping by to chat with us. Elizabeth, let's start with you. What exactly is meant by the term Ògenetic counselingÓ?
Elizabeth Varga: So, the term of Ògenetic counselingÓ is really used to refer to more of a process. And, it's a process of evaluating and understanding a family's risk for an inherited medical condition. So, a session with a genetic counselor usually would include something like a review of your medical history, taking a family history, a risk assessment where you assess that risk for a genetic disorder.
In some cases, genetic testing is performed and then there might be a follow-up visit to review the results, discuss the diagnosis of a genetic disorder and help educate a family and adjust to that diagnosis.
So, genetic counselors in general are trained professionals and they specialize usually in medical genetics and counseling as part of a graduate program.
Dr. Mike Patrick: Yeah, one website I came across, they had some great information for folks who wanna learn more about this profession was the National Society of Genetic Counselors and I'm gonna put a link in the shown notes to their website so folks can find it easily over at pediacast.org for Episode 393.
But they had really great information. And, not only for folks who are interested in a career in genetic counseling but also just for families. What services do they provide? Just help to understand what they do a little better. And then also for medical providers as well, when would you want to refer to a genetic counselor? What kind of services can be helpful for your practice? So, lots of great information there.
So Maggie, how does one then become a genetic counselor? So, if someone was interested in this as a career, sort of, what's the pathway to get to practicing being a genetic counselor?
00:25:47
Maggie Stein: Sure. So basically, start off with some type of Bachelor's Degree and I know that my classmates, we had all kinds, it doesn't necessarily matter to have to be biology or genetics. I had a Math major; you can do psychology, really, anything. As long as you have the appropriate pre-reqs that are required for entrance into graduate school.
And, they like to see a lot of volunteering especially anything counseling-related, really. So crisis hotlines are really big ones for people to volunteer. We also like to see people shadowing genetic counselors just so you get an idea of what your day is gonna be like and different specialties. And, a lot of people aren't exposed to genetic counseling prior to becoming interested so it's important to see that to truly understand.
And then there's, you know, the application process then you go to get your Masters Degree. Typically, there are around two years but some of them vary. Currently, there's only 37 schools in the US so the class sizes are pretty small and there's not a lot of different schools available. So, it's a very hard place to get into. And then after that, you pass boards after you graduate and there you are.
Dr. Mike Patrick: Yeah, yeah and Ohio State is one of the places that has one of these programs. And then, can folks do kind of a shadowing experience? Or I mean, do you have students in their internship kind of opportunities here at Nationwide Children's?
Maggie Stein: Yes. We always love to see people who wanna come in and shadow and we're always welcoming people to come talk to us and just see what the day is like and we offer opportunities here and I'm pretty sure there's other places around that will offer as well when they have the availability to do so.
Dr. Mike Patrick: And again, if you have a kiddo who is interested in Science, this may be one of those areas of Science that they may not have thought about that can be interesting. And, at National Society of Genetic Counselors, their website has a whole page on becoming a genetic counselor and we'll have link in the show notes to that as well.
00:27:48
So, speaking of practicing as a genetic counselor and just sort of day-by-day, I thought there'd be interesting just to sort of for you to describe what day-to-day schedule looks like. So, just what is it like being a genetic counselor? What do you do?
And Elizabeth, I know that you practice mostly in the cancer genetics clinic. So, tell us a little bit about that clinic and what you do there.
Elizabeth Varga: Okay, sure. So yeah, I do practice in the Cancer Genetics Clinic and the other people that staff that clinic, there's another genetic counselor, a physician who specializes in oncology, actually, there's two of them. And, psychologist work closely with us as well. We also have social work resources available and what we do in that clinic is basically we evaluate individuals as I mentioned for hereditary cancer risk.
So, only a minority, fortunately, of pediatric cancer is considered genetic in nature, about 10%. But, we will meet with a patient based on their diagnosis or their family history and evaluate whether or not it could be a genetic predisposition. And then, we will often offer genetic testing to evaluate that risk, talk about the results, the diagnosis, and how it might impact their current management, future management.
We help identify other family members who could benefit from testing. And then hopefully, our ultimate goal is to tailor the individual's care. So, either that could be current management or just surveillance to prevent cancer in family members.
So, that's a lot of what we do in cancer genetics. I also do participate in research. So, right now we're doing a lot of genomic research and we're actually doing genetic testing of both tumor tissue and kind of normal tissue. If someone has a cancer, we're hoping to personalize their therapy based on those genetic test results or genomic test results. And then if they do have inherited predisposition, again, it's more related to surveillance.
00:29:41
Dr. Mike Patrick: So, correct me if I'm wrong on any of this. But by genomic, we really are looking at the sequence in the DNA itself. So, the individual chains with the idea of beingÑdepending on what mix of genes you have then your cancer may respond to one treatment better than another. And so, sort of understanding what exactly someone has in their genes can help with determining treatment.
Elizabeth Varga: Exactly. So, genetic is usually referred to more of a single gene and genomic is a broader picture where you're looking at all of an individual's genes together. So, it's much more complex. And also, with cancer, that can evolve over time. So, what you may have in an initial tumor may change after chemotherapy or if you get a relapse or a recurrence of cancer.
Dr. Mike Patrick: Yeah. I suspect that you do spend a lot of time explaining complex things in terms that parents can understand. And, I know sometimes that can beÑthat can be frustrating especially forÑon the parent's side when they don't understand something and I'm sure that they appreciate someone sort of explaining, you know, what exactly is going on and breaking down what's happening at the gene level toÑin a way that they can understand.
Elizabeth Varga: Exactly. So, a large part of the genetic counselor role is being an educator. So, it's very important to spend time explaining those basic genetic concepts and then really making it applicable to the family so that they can act on that information. Share it with other people where it's relevant. And you know, we also do a lot of educations related to the healthcare team because a lot of specialists are not really specialized necessarily in genetics and genomics and its technology has evolved. Those are really new concepts sometimes for them as well. So, we're kind of partners in that.
Dr. Mike Patrick: Sure. And then, Maggie, tell us a little bit about your work in the General Genetics Clinic.
Maggie Stein: Sure. So, we see a patient'sÑwhatÑsee patients with a variety of conditions or different characteristics that we basically try to tie together into a diagnosis. Oftentimes, there's not a family history of something and kind of trying to discover what that might be for the child is something that we have on our plate to do.
00:31:46
How my job differs a little bit though is that I work directly with a medical geneticist. So, every patient that I see, they will also see. So, we have another set of eyes and just a different take on things as well, different set-up for the clinic. A lot of it involves going through the patient records prior to seeing them and making sure we have all the information we needed.
Oftentimes, we don't so we have to do a lot of searching. But, I spend a lot of my time on the phone talking with different patients. People have questions. We have to go through and make sure referrals are appropriate for genetics and that requires a lot of follow-up.
Like I said, we spend a lot of time educating different providers, our patients, our families. We spend a lot of time finding resources, making sure that people truly understand what we're trying to tell them however best they need to. We also will provide risk assessment depending on what's going on in the family. And then, a lot of follow-upÑlots of follow-up which is probably one of my favorite parts is you continue to see the families and the patients back.
But yeah, I guess that's a pretty good summary. I also am involved in some of the specialty clinics that we have. So, I just started the spinomuscular atrophy clinic, I'll be the genetic counselor there. And then, I see patients with the spinal bit for theÑevery Friday I'm involved with that clinic as well. So, we have the opportunity to reach out and go into other specialty clinics.
Dr. Mike Patrick: Yeah. I would imagine there's also sort of a mental health component to being a genetic counselor, you now, when folks have chronic diseases and problems of any sort. There's some anxiety that goes along with that. There's adjustments and lifestyle. How much of the genetic counselor role is counseling from a mental health standpoint?
Maggie Stein: That's a hard one because I feel like a lot ofÑevery family comes in and has very different needs. And, a lot of it depends on the severity of the condition for the child and how the parents are coping with that. I would say, for the patients, I don't necessarily do as much for the children from a psychological standpoint but I would say a decent amount of my time is spent trying to walk with parents through a diagnosis and through what this means for their child.
00:33:55
And kind ofÑI spend a lot of time mentally preparing people for what we could learn and how it might affect them.
Elizabeth Varga: Yeah, I think that's fair as well. In addition to the Cancer Genetics Clinic, I also see patients with chronic medical conditions such as like hemophilia and sickle cell, some of the hereditary blood disorders.
And so, as Maggie mentioned, a lot of it is kind of walking through years of life and as you see, a family history involved with children being born or sometimes, like with hemophilia, a mother has an affected son. And, she remembers a time when her father was dealing with hemophilia so it can bring back a lot of those memories. And so, yeah, there is just coping with genetic illness.
We are really lucky at Nationwide Children's that we can work hand in hand a lot of times with psychologists. So, if there is more need for a longer-term benefit, in that regard, we have those resources too.
Dr. Mike Patrick: Yeah. And, that's a great part of being in a multi-disciplinary team that you have those kind of resources available to refer to. But, you still need someone who recognizes there's a problem and that they need a referral. So, I guess the more eyes and interactions that you have on a family, the more likely that an intervention is gonna take place when, you know, a family really needs one.
So, both of you are in the realm of pediatrics in terms of your practice. What other areas of medicine can we find genetic counselors?
Maggie Stein: You can find us everywhere. There's adult cancer settings, there's a lot especially in Columbus. There is alsoÑwe have several lab GC's here who primarily work trying to help us interpret and doing a million amazing things. You can alsoÑthey're found in research. Like, part of this is time is spent. There's also becoming more in cardiovascular genetics, neurology, ophthalmology's a new one that's coming up, immunologyÑyou name a specialty and there's developing a need for things of that nature.
00:35:55
You can also find genetic counselors outside of the medical field. You can find them advocating for public health initiatives and working for these genetic testing labs to help offer advice and you know, counsel different providers. But, I would say they're everywhere.
Dr. Mike Patrick: One area that's sort of becoming more out there that we hear about is just that pharmacogenomics where not only could we tailor cancer treatment to an individual's genetic make up but may be other areas of medicine as well. Have you seen that kind of growing?
Elizabeth Varga: Yeah. Actually, right after this podcast I have a meeting where we're talking about that exact thing. So, pharmacogenomics is coming up, you know, with the Nationwide Children's and everywhere. So particularly, like epilepsy or autism spectrum, a lot of the psychiatric-type disorders, there's a lot of tailoring due to genetic changes to try to personalize the therapy.
And again, Dr. Vear, who is in the Cancer Genetics Clinic, that's actually part of her expertise. And so, that's really what we are doing in cancer genetics is looking at, you know, what types of therapies you might best respond to and then also ones that you might want to avoid.
Dr. Mike Patrick: Yeah. Elizabeth, the collaboration between genetic counselors and physicians, not only with geneticists but also just in the primary care world cause as you mentioned, there'sÑyou know, there's a need for education. And, for one thing this field is expanding like crazy and so genetics is, you know, not what it was like, you know, when I was in medical school for sure.
So, in terms of just that educational piece and maybe helping determine like what testing to do, is thatÑa lot of the collaboration that takes place between genetic counselors and especially primary care?
00:37:46
Elizabeth Varga: Yeah, especially the genetic counselors who work within sub-specialties, that is a large part of our role is being that liaison between the medical team and the patient. So, a lot of my time is spent identifying the appropriate genetic test options because with the evolution of technology, we're able to do more and more but it literally changes by the day what's available.
There's also a lot to navigate in terms of things like reimbursement and insurance covered for genetic testing. So, that can be difficult as more and more insurance companies have requirements for genetic counseling before testing. Part of that is because they know that the genetic counselor can help select the best test and they can also help the patient understand if that test will be relevant and how it will most help them. So, we do field questions from all types of different specialties and help to educate the providers.
Dr. Mike Patrick: Yeah, is that something thatÑso, if I'm a primary care doc, and we have a lot of those in our audience who's practicing medicine whether it's family practice doctor, pediatrician, maybe a nurse practitioner and they have a question about a possible genetic test that would need to be done. Do they typically just refer to genetics clinic and then they see a geneticist and the testing goes from there or do you do consultation to get testing done before they even come in to clinic?
Maggie Stein: I would say, a lot of times we get referrals and I feel like it's typically when a referral is appropriate for genetics, we usually don't end up reaching out to the physician. We just go ahead and pass them through and agree to see them. But, I would say a lot of educations happen when a referral is not necessarily something that we would see someone for or we feel like there's more information that we need before we see Ôem, I feel like that's when the most education happens.
Just because I think we would prefer to see them in genetics to make sure that we're not missing something else that we need to be testing for or something else that's currently obvious so that'sÑI think we prefer to see them and have them be referred.
00:39:46
Dr. Mike Patrick: And that's great here because we have this wonderful multi-disciplinary clinic and you can get in and see a geneticist. But, if you live, you know, three, four hours from the nearest pediatric tertiary care center, is thereÑare there genetic counselors who practice independently in smaller towns? Or is it pretty much more big clinics?
I know there aren't a lot of you out there and thisÑprobably the answer to this may not be the same today as it is, you know, five, ten years from now. But, just in your experience, do you find most genetic counselors working in big places like this? Or are services available in smaller places as well?
Elizabeth Varga: Yeah, so a lot of genetic counselors do historically work at large institutions. However, we are as a profession, really adjusting our models to better integrate into medicine. So, now there is the availability even of telephone genetic counseling. So, some of those genetic counselors actually might work for a testing laboratory. So, they would interface with the patient if a doctor reaches out about testing.
The laboratory genetic counselors are a really great resource in that way. So, they can either help the clinician who wants to order a test, know what to order, where to get it and help facilitate that process or there's also a laboratory genetic counselors or even just clinical genetic counselors in private practice, as you mentioned, that can help a patient navigate all that information by phone.
Dr. Mike Patrick: Yeah, it's a lot to navigate and to really have a compassionate person who knows a little something about counseling and education and mental health and to really help navigate the complexity of this. I'm sure it can be really reassuring to folks and provide lots of help to families. You've mentioned having insurance coverage for genetic counseling or genetic testing. What is your experience these days in terms ofÑis that a difficult thing? Are those services covered? And if not, how do patients, you know, get the service and get a cover if their insurance doesn't pay for it?
00:41:42
Maggie Stein: I would say, typically, we see that it's covered. You know, a lot of times that doesn'tÑthat's not information that comes back to us. But, we often advocate for our patients as best we can especially in the area of genetic testing. If it gets denied, you know, we will write letters saying, ÒPlease pay for this. This is important for our patient.Ó
As far as getting the services themselves covered, I would say I haven't run into a ton of instances where meeting with a genetic counselor isn't something that's covered. And, it can be, you know, like any kind of healthcare can be expensive. But, I would say primarily it's covered but it's getting more challenging because lots of insurance companies willÑare creating it a little bit more difficult to get the services covered.
Dr. Mike Patrick: Yeah, and especially with the testing, would you say, cause that can be very expensive quickly.
Maggie Stein: Mhmm, lots of people ask us in sessions if this is gonna be covered or not and we specifically go through the insurance first and ask them because we don't want to just go order this testing cause it is expensive. And, when people ask me, I say, ÒI just don't know today if the insurance company is gonna cover this particular test for this particular person.Ó
Dr. Mike Patrick: Do you find as a genetic counselor that you're interactions with families tend to be more at the period of diagnosis and there's the education and the testing phase of it? Or do you haveÑdo you have some families that you have more of a long-term relationship with and see them and, you know, develop that camaraderie?
Elizabeth Varga: Yeah, I have loved that aspect of my job in hematology and oncology because certainly I do get the opportunity to follow people for a long period of time. So, I think in general with genetic counseling it is more often a one or two time consultation but it varies a lot depending on your area of practice. So, certainly where I do specialize, I have that ongoing relationship.
Maggie Stein: And I would say mine's more of a one or two time and unless there's something new or a new birth or something like that, it'sÑyou don't get to follow as much. I'm also new so I'm just starting to see my first round of follow-up patients.
00:43:50
Dr. Mike Patrick: And. I mean, that also makes it a great profession for folks with different, sort of, personality types because there's gonna be, you knowÑsome people really enjoy that long-term relationship. You know, like a primary care doctor has and others are more, you know, emergency medicine, urgent care, kinda mindset. And, maybe there's a little more ADHD in that group of folks and you just move on, you know, from one thing to another. And not that necessarily one is better than the other but really just kinda matches personality types. And, it's just nice that there's a lot of different variation of practice within genetic counseling that you can do which is pretty cool.
Elizabeth Varga: Yeah. I will say just in my own career cause I've been practicing fifteen years now. One thing that's been great is that I've been able to change to a lot of different specialties and do a lot of different things. And so, I never get bored. You can always re-invite yourself.
Dr. Mike Patrick: Absolutely. And, we'll have links to the Cancer Genetics Clinic here at Nationwide Children's. Also, the geneticsÑand what used to be called Genetics and Metabolic. What's the new name? There's a new name for it.
Maggie Stein: The Division of Genetic and Genomic Medicine.
Dr. Mike Patrick: Yes. And so, that clinic here at Nationwide Children's and we'll put a link to that in the show notes as well so folks can find it easily.
In terms of families getting connected with genetic counseling, I would imagine that it happens mostly through whatever sub-special clinic that they're in or their primary care doctor would help facilitate getting them in to one of those clinics in order to see the counselor. Is that correct?
Maggie Stein: Yeah. We, in general, we go off of referrals and that's usually help people get connect with us. You can get a referral from your primary care physician or you can self-refer if you feel it's appropriate. And, often times if you just have questions, we're always happy to answer. So, if you go to the genetics department, it's not hard to find us cause we haveÑI mean we don't have a lot of genetic counselors but in general, we have a nice size pool of genetic counselors in general.
Dr. Mike Patrick: Sure. And, if you're not here in Central Ohio necessarily, how do you get linked up with a genetic counselor in your area?
00:45:43
Elizabeth Varga: Yeah, so as you mentioned with the link that you're going to embedÑso the National Society of Genetic Counselor's website is really my go-to location to find referrals. So, they actually have an icon on their cover page that says, Òfind a genetic counselorÓ. So, you would click on that and then you can actually search by your geographic area and you can even search by specialty.
Also, if you're a student interested in this area, you can even find genetic counselors who'd be willing to talk to you about the profession. So it's just a great one-stop resource for finding services. They also have it divided by in-person versus phone.
Dr. Mike Patrick: Great, and we'll put links to that. And, in fact, I think I do have a link for the page ÒFinding Genetic CounselorsÓ, so we'll have all of that in the show notes for folks so if you're interested in genetic counseling from an education point-of-view, you might be interested in it as a career, or you're just interested in finding out more about it, whether you're a provider, or a family, a patient, they really have all that information there. And, we'll have the links in the show notes for this episode, 393, over at pediacast.org.
Alright, well, one last question I have for you, it'sÑand I didn't warn you about this and I apologize. But, it's really, you know, cold winter weather outside and so we're doing more things inside the home. And I haven't asked folks this in a long time but I used to ask all the time. What is your favorite board game? Like, to play with your, you know, with kids, with your family when you get together with other relatives for, you know, get together? Just to put some ideas in folks' minds of something they can do as a family indoors that's kinda fun and you're around the table instead of in front of a screen. What do you think?
Elizabeth Varga: So, I actuallyÑIt's not quite a board game but we've been playing cards a lot.
Maggie Stein: That's what I was gonna say.
Elizabeth: So, war. We've also been playing a game called ÒBlankÓ cause I've got some younger kids and it's kind of a fast turnover game and UNO.
Maggie Stein: So, I was gonna say cards too. So, I feel like I should pick a board game but we love to play Euchre.
Dr. Mike Patrick: Oh sure, yeah.
Maggie Stein: We'll get big Euchre tournaments going. But board gamesÑ
Dr. Mike Patrick: Yeah, cards work too.
Maggie Stein: Monopoly is a really good one. Monopoly's the best one.
Dr. Mike Patrick: Yeah. Do you go with just the classic Monopoly or do you have a favorite type of Monopoly?
Maggie Stein: I go with the classic but I recently heard that there's a dog one where you can land on different spaces and buy different dogs so I may want to invest in that.
00:47:58
Dr. Mike Patrick: Oh yeah, that sounds fun. Although I think the cat one would probably go buy enough cats but you know how that is.
Alright, well, Elizabeth Varga and Maggie Stein, both genetic counselors here at Nationwide Children's Hospital. Thanks so much to both of you for joining us today.
Maggie Stein: Thanks for having us.
Elizabeth Varga: Yeah, thank you.
[Music]
00:48:46
Dr. Mike Patrick: Welcome back to the program. We have just enough time to say thanks to all of you for taking time out of your day and making PediaCast a part of it, really do appreciate that.
Of course, thanks very much to our two terrific guests, Elizabeth Varga and Maggie Stein, really appreciate both of them stopping by and talking with us today.
And, one thing we didn't mention in the course of the interview that I think is pretty important for you to know about, if you're interested in a career in genetic counseling or just in Science in general and maybe you're sort of undifferentiated in terms of what part, what area of Biology or Science that you're interested in, particularly for your teenage and college age kids ou there.
You may want to let them know about this because if you're interested in genetic counseling, this is the time to get in to the field because thereÑyou know, really, genetics is really exploding as a discipline and there are a ton of jobs out there.
And in fact, Elizabeth, Maggie, were telling me on their way out of the studio that there are four job postings right now for every graduate coming out of a genetic counseling program. So, you have your picked jobs. There's a real need for genetic counselors and as genetics and genomics continues to expand, we would expect there to continue to be lots of job opportunities. So, this may be a good one to think about going in to.
So, just let your kids know. ÒHey, you know, genetic counseling, pretty cool job.Ó You get to spend your day with people, there's an educational component, a counseling component, a consultation aspect and so, you know, pretty cool stuff. So, check that out if you are interested in a science career or your kids are as they are traversing high school and in to college.
Alright, don't forget you can find PediaCast all sorts of places. We're in iTunes and I haven't mentioned this in a while and we haven't really had a lot of iTunes reviews and I think folks are coming across PediaCast in so many places now. You know, you may be listening as you come across one in Twitter, through e-mail, on Facebook, through podcast apps, of course, we're on Spotify now and Google Play, iHeartRadio, all those places.
00:50:56
And so, I think there's a little bit of a drift where folks listen to podcasts used to just listen through iTunes and subscribe through iTunes. But, iTunes is still important and we really do appreciate your reviews of the program. So, if you are finding that you enjoy Pediacast, you like listening and tuning in week after week, please just take a couple of minutes to go into iTunes and write a review for us. We haven't had one in a while and it is helpful in terms of letting other parents know that we're relevant, that we have good evidence-based information and it's worth their time to listen.
So, if you enjoy PediaCast and get a lot out of the program, if you could swing by iTunes and just leave us a quick review, it would be much appreciated.
Of course, we're also on social media. You can find PediaCast on Facebook, Twitter, Google Plus, Pinterest, also on LinkedIn, and we really do appreciate that also when you tell your family, neighbors, co-workers, just sort of those face-to-face referrals really mean a lot.
So, anyone who has kids or takes care of kids who would be interested in evidence-based pediatric confirmation, hopefully presented in terms they can understand pretty easily and get a little bit of a practical spin put on various topics. Please let them know about PediaCast.
And that would include, too, your child's teacher, so educators, I think, would get a lot out of this program and, of course, your pediatric medical provider. Let them know about this program and we also have a show for them, PediaCast CME. The CME stands for Òcontinuing medical educationÓ.
Basically, we turn the science up a couple notches. It's very similar to this program. But, we do offer free Category I: Continuing Medical Education credit for those who listen and participate.
Shows and details, all are available at the landing site for that program which is pediacastcme.org. And, PediaCast CME is also in iTunes, Google Play, iHeartRadio, Spotify, most mobile podcasts apps. Simply search for PediaCast CME, and you should be able to find it.
00:52:50
If you are a medical provider and you listen to PediaCast CME, again, a review on iTunes would be most appreciated.
Alright so, for everyone, thanks again for stopping by, really do appreciate your support. And until next time, this is Dr. Mike saying stay safe, stay healthy, stay warm too, and stay involved with your kids. So long, everybody!
[Music]
00:53:28
Announcer 3: This program is a production of Nationwide Children's. Thanks for listening! We'll see you next time on Pediacast.
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