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Resources available locally, farther afield for families challenged by mental illness

If you think pediatricians and other primary care doctors can get uncomfortable when it comes to dealing with a patient who shows signs of mental illness, imagine what a parent or family member can go through.

The limited exposure doctors get to mental health matters in medical school and residency often trumps that of the general public.

Yet depression, anxiety, autism, obsessive compulsive disorder and other mood disorders suddenly turn health care providers and families into a team – working to tackle some of the most complex conditions in the human dynamic.

“We all feel there’s a long way to go,” Dr. David L. Kaye told me recently during an interview for this weekend’s In the Field feature in WNY Refresh.

Kaye, a pediatric psychiatrist, professor and vice chairman of academic affairs  of the University at Buffalo Psychiatry Department, is director of Child and Adolescent Psychiatry for Primary Care. CAP PC is a collaborative of mental health professionals from top New York state medical programs designed to help primary care doctors better treat those with behavioral health issues. He will help lead a workshop in Buffalo later this year designed to support primary care doctors who want to better communicate with those who have mental health challenges, as well as families of those patients.

Research shows that such communication often is lacking, according to the Institute for Healthcare Communication, and the need for improvement is great:

  • As many as one in five American children have mental health conditions serious enough to warrant treatment. “Virtually all such children are seen in primary care, but very few receive needed mental health services.”
  • Less than half of caregivers with concerns about the mental health of children in their care express those concerns to physicians.
  • When parents do express behavioral health concerns, as many as 40 percent of those cases are not referred on for appropriate care

Doctors, nurse practitioners and other health professionals interested in the Nov. 7 workshop can visit, email or call (217) 621-6867.

But what about help for parents and families, as well as behavioral health patients themselves?

Below are excerpts from my interview with Kaye that provide some insight – and places to start.

Q. What are the most important things a parent can do when it comes to making sure they are getting the best sort of behavioral health care for their child?

Talking to their pediatrician or primary care doc and asking them for referrals. I think that’s one very good way. Probably more and more, it’s like the way we get cardiologists and other specialists: We talk to our friends. There still is stigma but I think it’s less and it happens much more that people will talk to their friends and tell them where they had good experiences. And then I think going online. There’s a lot of good resources out there. There are a few I recommend: The American Academy of Child and Adolescent Psychiatry has on its website something called “Facts for Families.”  There’s probably 200 one-page overviews of different topics, including how to find a child psychiatrist or psychologist. The Academy of Pediatrics now has a ton on mental health on its website. You can see pediatricians are starting to embrace mental health more and more. It’s come up on their agenda in the last 10 years. There’s a website I like a lot called the Clay Center for Young Healthy Minds out of Mass General. There’s another group called the Child Mind Institute that has a website and a lot of stuff for parents. Then you have things for different conditions like autism and ADHD. You can find those through any of these other websites. They’ll have something like “A guide to treatment for parents.”

Q. What resources are available in this area?

NAMI of Buffalo & Erie County and the Mental Health Association of Erie County  are the two big ones. The Parent Network of WNY is also is a great resource. Their job is to be available to parents for these types of things.

Q. You've worked in Buffalo 33 years. What sort of conditions did you generally treat during your clinical work at Children’s before shifting even more toward education?

I worked in our outpatient clinic for many years. I also worked on our consult service for a number of years and I’ve covered the emergency room. I’ve seen a lot of kids with developmental disabilities and related conditions. I’ve seen a lot of kids with ADHD, a lot of kids with mood problems – depression, bipolar disorder – a lot of kids who have been suicidal. It’s really a wide range. Kids with anxiety, kids with OCD.

Q. How old are kids when they generally start to display some of these conditions?

Half of all adult disorders start by age 14; 75 percent by the early 20s. We see a handful of kids before the age of 5 but not a huge number. At one point at Children’s, we had a therapeutic pre-school program, for about 10 years, and I consulted to that program. ADHD generally starts before age 7; you start to see signs of it pretty early. It can be as early as 3 or 4. A lot of the time it doesn’t start to be a big enough problem until a kid goes to school, and then it gets identified. A lot of those cases are now being picked up and managed in primary care. The ones we see more and more in psychiatry are more complicated.

Anxiety and depression tends to start a little bit later than ADHD, but sometimes you hear kids at 1 and 3 having difficulty regulating their mood. It isn’t a clinical problem until the kids get older and hit a bump in the road.

Autism can start early. There’s been a lot of controversy about how common is autism. Now people are saying it’s more than 1 percent, one in 68. When you take a spectrum, there’s a very, very severe group of kids. In the olden days, that’s what we talked about, and that’s a pretty small number. But then you start to broaden the criteria, you start to get bigger numbers, and that’s clearly part of what’s happened over the last 20 or 30 years. We’ve gotten more sensitized to it and we’ve broadened the criteria.

Q. Does that help on the treatment side?

Yeah. It helps in terms of picking things up earlier, intervening earlier. More and more is available every year for kids on the autism spectrum and that’s a great thing. Years ago, other than the child who’s non-verbal and very severely impaired, some of those kids who are more toward the typically developing end of the spectrum, those kids struggled but people would think it was either motivational – they’re not trying hard enough or are mad at their parents – or people would have explanations. … People now recognize that the kid who was maybe never able to make friends – people would say, “What’s that kid’s problem?” in the past, or “He needs an attitude adjustment” – it didn’t include the idea that maybe there’s something that’s not quite right with this child’s brain development. That idea is really the last 30 years. That’s really been a tremendous improvement.

Q. Is there a thought at this point about what causes autism? ADHD?

Autism and ADHD are probably broad problems. We’re putting them into one basket clinically, but in 20 years we’ll probably have many baskets, and in 50 years we’ll probably think everybody right now didn’t know what we were doing. We know a lot of things right now but there’s a lot of things we don’t know. There’s a lot of different theories, a lot of different observations that have been made. It’s thought that they’re both what people call heterogeneous disorders. When we know more, we’ll probably be able to differentiate between the kinds of problems that look the same in certain ways.

Q. Do you suspect you’re going to find more environmental or genetic or biological causes?

A lot of these things are complex. We’ve looked for the magic bullets, like blue eyes has this gene and not that gene, and we haven’t been able to find that for any of the conditions, but there are studies that confirm that there are genetic components. For example, one of the strategies is twin studies. If one person has autism and they’re fraternal twins, you look at what are the risks for the other one? Then you compare it to identical twins. The rates are different – 50 to 90 percent of identical twins will both have autism. With fraternal twins, it’s less than 10 percent … so we know there’s a strong genetic component. The next step is trying to figure out, which gene is it? Is it many different genes? Nothing has converged. That could be because we’re talking about many different disorders. We just don’t know how to explain them.

It’s been tough to get clear pictures, everyone confirming the same things. Despite that, there are many studies that show differences in the brain and brain development for kids with autism and ADHD, but research has shown there’s strong genetic components to both of those conditions.

Q. Then we’re talking about a number of other conditions – anxiety, depression, bipolar disorder and schizophrenia – where the onset might be later. Are these conditions different but equally complex?

They are. Again, there have been twin studies with this and they suggest strongly that there are genetic components; probably not quite as much as with autism and ADHD but pretty strong. Child psychiatrists believe strongly that there’s a biological and a genetic foundation. Probably like any condition, whether that’s hypertension or cancer or heart problems, there’s a combination of factors that go into it but you probably don’t get it if you don’t have some kind of biological predisposition.

Q. What about the challenges of treating these conditions?

You asked early on about the evolution of treatment in the field. The evolution of treatment has been remarkable in mental health and in psychiatry. When I was in training in the late 1970s, pretty much there was individual psychodynamic psychotherapy. There was family psychotherapy where I trained and there were some medications with kids but they didn’t work very well. I went through my whole fellowship and I did not prescribe any medication to kids.

There were no programs for autistic kids. There were no programs for kids with ADHD. There were no programs for kids with OCD. We’ve seen tremendous advances in the evolution of treatment both biologically and psycho-socially.

A lot of times psychiatrists say, “We haven’t had any breakthrough medications in 20 years in psychiatry.” That may be true but certainly, in the 1980s, the Prozacs and SSRIs came on board. The atypical anti-psychotics came on board. Those were significant improvements. We all feel there’s a long way to go. We wished these medications worked better and had less side effects. In some ways, they’re gross instruments, blunt instruments. We’d love to have more laser kinds of treatments but those don’t exist by and large in psychiatry. I think we’ve gotten much better and integrating treatments, developing different programs, different approaches, more practical approaches. More of a range of programs.

When I was in training, there’s was outpatient once a week or every two weeks and there was inpatient. That was it. There were no things like partial hospital programs or day treatment programs or intensive outpatient programs. So there’s really been tremendous progress in the kinds of interventions that are available to people.

Q. One of the things I hear from family docs and the few pediatricians I’ve interviewed during the last 2 ½ years is that as many as half their patients are dealing with some sort of a mental health element. Are you hearing the same and is that different than it was 30 years ago?

Is it different or are we more aware, tuned in? How much of it is that? I don’t know if I know, but certainly the world feels a lot crazier than it used to. With autism, most people would say there’s clearly an increase that we’re recognizing. Clearly a large part of it is that we’re recognizing it better, we’ve broadened our criteria. Is there a real rise? People are on the fence about that. But we’re wondering, is there some environmental factor that has contributed? An environmental factor has not been confirmed. We do know it’s not vaccines and immunizations. Whether it’s something else, I think most people in the field would say it’s possible there’s some yet-to-be-identified environmental factors.

We started doing serious epidemiological studies in the ‘70s and the rates of disorders in the ‘70s and ‘80s were strikingly high. … In the late ‘90s and 2000s there was another large study that showed there were over 50 percent of people who, over a lifetime, had some kind of diagnosable mental health condition. Pretty clearly there’s a large number. Life is hard and these are very common kinds of problems. Now we know they’re very common. The last 25 or 30 years, it’s also been in the media more often...

It can’t but help the child and the family to identify something and get some supports and interventions.

This is the hot frontier. There’s a lot going on. But we haven’t put the money into mental health that we have into HIV and cancer research and heart disease. We would like to see a little bit more.


Twitter: @BNrefresh

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