Tag Archives: psychiatric medication

Child psychiatrists or unicorns, which one is harder to find?

March 6th, 2016

Unicorn Pooh, Flickr, CCWhen the local mental health clinic abruptly closed last September, Cheryl knew she would have a tough time finding a new psychiatrist to treat her son.  Her 15 year old son is complicated, to start with.  He has several diagnoses, has uncommon reactions to medications and has had frequent ups and downs.  Shortly after she began searching, Cheryl realized the truth:  child psychiatrists with openings are nearly impossible to find.

The clinic closed with no warning and Cheryl didn’t have time to get a referral, make a plan or even grab her son’s records.  She scrambled just to stay afloat. She called every clinic and practice that her insurance covered.  Then she called the ones it didn’t cover.  She googled, she pored over lists and once, upon finding a number for the old psychiatrist, called it only to find it was the doctor’s home number.  That didn’t work either.  The old psychiatrist didn’t have a private practice and couldn’t prescribe through the now-closed clinic’s system any more.

It’s more than 6 months later and Cheryl is still looking for a psychiatrist.  Her son’s pediatrician has been reluctantly prescribing the same medications he was on last September when the clinic closed.  If anything changes – a new reaction, a new crisis – the pediatrician doesn’t think he has the expertise that Cheryl’s son needs.

For Cheryl and many other parents, child psychiatrists are scarcer than unicorns.  In popular culture unicorns are making a small comeback, appearing on t-shirts, in movies and songs.  In the real world they remain a myth.  The term unicorn has come to mean “any fabulous beast which many desire to find and possess, but which proves to be enormously elusive.”  You see the parallel to child psychiatrists, right?

The statistics back Cheryl’s experience up.  In 2014, a study published in the American Psychiatric Association journal Psychiatric Services showed that the average waiting time in major U.S. metropolitan areas to see a child psychiatrist was 25 days for a first visit. Investigators for the study tried to get an appointment with 360 outpatient psychiatrists in Boston, Houston or Chicago and found that after two calls, despite having insurance or saying they would be willing to pay out of pocket, appointments were nailed down with only about 25 percent of the doctors. According to the American Academy of Child and Adolescent Psychiatry, there are approximately 8,300 practicing child and adolescent psychiatrists in the United States — and over 15 million youths in need of one.

Besides the scarcity, there are other barriers.  Some psychiatrists aren’t taking new patients.  Others are leaving the field to pursue other interests.  Many others don’t take insurance of any kind whatsoever.  One mother called me several years ago to tell me she was trying to find a child psychiatrist for her teenage son.  She got a solid referral and was filled with hope.  When she called the doctor’s office she was told that he worked off a retainer system similar to an attorney.  You paid several thousand dollars up front and he billed against it.  When that was gone, you negotiated the method to pay once again.  She was shocked and called to ask if this was standard practice.

When child psychiatrists work at clinics, hospitals and medical groups, their services are available to anyone who has insurance accepted by that group, which often includes most health plans.  But many clinics have a policy in place which creates an additional obstacle.  Only children and teens who receive outpatient therapy at that clinic or medical group can access the services of the psychiatrist.  The thinking is that this will ensure that there is more coordination between the therapist and psychiatrist.  While some parents like this model, others report that the coordination simply doesn’t happen. And for children and teens who get therapy at an outside location, this policy limits the number of child psychiatrists available to help them.

Most pediatric medical specialists, such as pediatric cardiologists or pediatric endocrinologists, get paid a higher rate by insurance companies because they have the extra training and education needed to work with children and teens.  Unfortunately, this is not true for child psychiatrists.  The get paid the same rate as general psychiatrists.  Most child psychiatrists  go to college for four years to get an undergraduate degree, followed by four years of medical school, then four years of general psychiatry and finally a two-year fellowship in child psychiatry. A college freshman aspiring to be a child psychiatrist is looking at 14 years of training.  Their reimbursement doesn’t match that.

Parents value psychiatrists because they are highly trained and have greater breadth of experience at the end of those 14 years. When a child has uncommon reactions to medications, like Cheryl’s son does, a child psychiatrist can parse out whether the new symptom is the illness getting worse or a medication side effect.  They listen to parents talk about their child’s behavior and are great at figuring out how to prioritize this over that in the treatment plan.  They ask smart questions and are great observers.

With the passage of health care reform, our children get their yearly well child visits for free.  Their annual flu shots are not only free but you can often get them right away at a local pharmacy, a “minute clinic” or other options in your community.  None of this is true for mental health care by a psychiatrist.  Costs are high, waits are long and the search is filled with dead ends.  I think it might be easier for Cheryl to find a unicorn.  If she does, maybe she can trade it for a child psychiatrist for her son.

 

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Herbal remedies, psychiatric medication and what works

June 7th, 2015

file9041272379125My son told me the other day that he’s trying Melatonin again. This time it seems to be helping. When he first tried it, he was about 12, had raging insomnia which often led to rapid-fire talking and pretty wild and risky behavior. Lack of sleep stressed his brain and pushed him into what he called a “hippy happy” mood and everyone else called mania. When he was like that, I had to keep both eyes on him and do other tasks with just part of my attention. We gave Melatonin a shot and it really didn’t work. Neither did St. John’s Wort, fish oil or a variety of other herbal remedies. I really wanted them to work, but none did.

What ended up working was a combination of two psychiatric medications plus lots of therapy. We tried more than 30 medications during his childhood and teen years and many came with side effects. There was dry mouth, shaking hands, drowsiness, weight gain and the dreaded acne. Medication trials were frustrating, discouraging and it was hard to keep believing there was a magic combination out there. We soldiered through, talking, hoping and sometimes arguing about it.

We looked for something kinder, gentler and more “natural.” It seemed somehow healthier to go into the supplements aisle or vitamin store and purchase something there instead of a prescription at CVS or Walgreens. At those times I felt as if I was investing in his health rather than treating his illness and I liked that. Sometimes we use the terms “mental health” and “mental illness” interchangeably. But there is a difference between mental health and mental illness and how we engage with each one. I tried to increase his mental health through alternative approaches, but he also needed treatment for the illness.

Most parents of children and teens with mental health issues try alternative treatments at one point. For some, they seem to help. For many, they have mixed results. We all receive the same messages from the media, from our families and from other parents. Putting your children on psychiatric medications is risky business, they say. It’s dangerous and there can be long term side effects. Parents like you are cavalier and move too quickly to use medication. Some of these messages are mixed up with a strong dose of parent blaming and a good dash of stigma toward mental illness.

The negative messages about children and teens and psychiatric medication are often unchallenged. For my son, medication kept him alive. He made his first suicide attempt at age eight and there were many more over the years. When he was manic, he was unpredictable. There was the time he climbed on the roof and told us he would float down. There were other times when he would fly into rages and threaten to seriously hurt his brother. There were the weeks he cried and hid and refused to go to school. For some children and teens, medication keeps them in school and at home. It lets them sleep (and lets their parents sleep), focus and function.

When my son was in middle school his therapist wisely said, “Medication is a tool. It helps him be able to participate in therapy. It creates a space between his thinking of something and doing it. It gives us all a tool to help him manage his behavior.” A light bulb went on for me. I realized that medication was not a standalone treatment and I should stop thinking and talking about it that way. It had a context and was part of an larger strategy. My son needed more than one treatment. Without them all, he didn’t do as well. We added and subtracted until we came up with the right set of things: a school program, after school programs, lots of therapy and yes, medication. I wanted herbal remedies to be part of that set of things but it just didn’t add much.

There is always that tension between investing in mental health and treating mental illness. Maybe for some people they are one and the same. It’s certainly essential to do both. But don’t confuse the two. From the time our children are small, we do many things to increase their health, whether it’s emotional, mental or physical. We make sure they get nutritious food, a quiet place to sleep, time to play and lots of love. We find play activities for them when they are small and then shuttle them around to classes and sports when they get older. We bring them to family gatherings, religious services, community events or whatever our family does. We know these things make their bodies, minds and lives stronger.

When there are signs of illness, we notice and we act. We seek care and choose treatment. That is our role as parents. We don’t stop doing healthy things but the emphasis shifts. If it’s a medical illness, we don’t feel guilty about accepting treatment for our child. We also might add alternative remedies into the mix and don’t expect them to replace the treatment. Nobody questions or criticizes us. If the illness is psychiatric, we doubt ourselves. Other people often do the same, echoing what we are already thinking.

My son is trying wellness. He bought some Melatonin when he had a few days without sleep and it helped. We talk a lot about mindfulness and meditation these days. He might try other options soon, too. But these things work best when you are consistent, take them daily or have a daily practice. His medication lets him construct and hang on to that routine. He’s not stopping his medication because it works, he says. And it gives him the calm and quiet space to consider what else could work too.

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Bucking Conventional Wisdom in Mental Health

February 4th, 2015

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.

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Weighing in on a controversial topic

September 14th, 2014

Teen angst, bsmith2, flickr, creative commonsWhen my son was 19 years old, he went off his psychiatric medications. He had just graduated high school from a residential program where taking prescribed medications and going to therapy was mandatory.  “I just want to see what I’m like without them,” he said. “I’ve been on meds and in therapy since grade school,” he reasoned, “so maybe I don’t need them anymore.”

Within 3 days, he spoke so rapidly you had to watch his lips to understand everything he said.  He slept 2 or 3 hours a night and had boundless energy.  He pronounced himself “hippy-happy.”  Within 5 days, he began to see things that no one else could and became agitated easily.  I held my breath.  In the past, “hippy-happy” had turned into instances when he thought there were conspiracies against him and other times when he threatened me or his younger brother.  This time, we were lucky.  He trusted my observations and those of other people he felt close to and resumed the medications after 12 days.  For him, medication turned the switch back to normal speed and shifted his reality back to where it meshed with other people.  But what if that hadn’t happened?

There is an emotional debate going on in mental health circles across the country right now about Assisted Outpatient Treatment (AOT) which compels people over 18 with mental illness and who are considered a safety risk, into treatment.  On one side are those who are worried about preventing shootings like those in Newtown and Aurora, who point out that compelling treatment is better than jail.  They believe there needs to be a process where someone with a serious mental illness can be ordered by a judge into treatment.  On the other side of the issue are those who worry that such a law can take away the self-determination and independence of people with mental  illness.  There is little common ground.

What do parents of young people think?  With some exceptions such as Liza Long, much of the debate about AOT has been waged by adult consumers, mental health professionals and legal groups.  If we want changes (or not) that work for us, parents of young people need to weigh in.

Young people are living at home in droves.  And not just young people with mental health or behavioral health issues. In 2012, 36% of the nation’s young adults ages 18 to 31 were living in their parents’ home, according to a Pew Research Center analysis, the highest percentage in at least four decades.  A great many have remained on their parents’ insurance as well.  Their day to day lives are intertwined with their parents, their siblings and often extended family as well.  This has become the new normal in America.

Parents of children and teens with mental health needs are used to being involved.  They work for years to become knowledgeable and effective champions for their children. They fight for services in IEPs, advocate with insurers, stay on top of treatment and push for access.  As a colleague puts it, one day our children go to bed age 17, wake up age 18 and are supposed to be in charge of their treatment and navigate an unfriendly maze of services.  Parents are suddenly to be both not seen and not heard.  This is dissimilar to families where a young person has a chronic health condition; for them, it is considered a good practice for parents to stay part of the team while slowly relinquishing management of their child’s illness.

Parents make decisions based on what is best for the entire family.  When my then-19-year-old son went off his medications, I worried about the impact on his 16 year old brother.  Many families of young adults with mental health needs have other children living at home too.  It’s your job as a parent to think of the needs and safety of each family member.  Much of the debate about Assisted Outpatient Treatment is focused on rights or needs of the individual while parents always balance what’s best for the family with what’s best for each son or daughter.

Many families I know have used the courts to access treatment for their minor child.  Massachusetts has recently reformed its status offense laws (Children Requiring Assistance) but parents are still urged to file a petition saying their child is out of control by schools, therapists and relatives.  While it is a last resort and can produce mixed results, families are often comforted by the simple fact that there is an option they can turn to.  A number of parents of young adults have wished for a similar option where they have the ability to petition for services when they are desperate.

If my family were a game show, it would be Let’s Make a Deal.  We talk, we negotiate, we talk some more.  When my son went off his meds (the first time; yes, there were other times), this worked for us.  I talked, he argued, I listened, he did too.  But every family is different.  Luck plays a part as well.  He had a long relationship with his psychiatrist and trusted her.  His relationship with his brother was good at that point and he listened to his input.  At another point in time,  none of this might have been true.

Forty-five states have laws that permit the use of AOT.  Massachusetts is not one of them.  I have always been firmly in favor of stopping anything that lessens someone’s rights, especially their right to choose for themselves. But if my older son’s rights are in conflict with my younger son’s safety, my advocacy hat comes off and my parent hat goes immediately on.  Parents of children with mental health needs have to make tough decisions that are right for their family every day.  It’s time for us to weigh in on this issue too.

 

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Where did the bipolar go?

June 11th, 2012

When she was four years old, my daughter received a diagnosis of mood disorder, and when she was six, a new psychiatrist diagnosed her with bipolar disorder. I will never know whether she received this diagnosis because I took her to a particular clinic at a leading medical center, or whether her constellation of symptoms truly fit that diagnosis.  The psychiatrist who gave her the bipolar diagnosis has been criticized in the media for over diagnosing children with bipolar disorder. A recent story in the Boston Globe describes the ongoing dispute within the medical field over whether chronic irritability and aggression symptoms of ‘mania’ or are better described in the upcoming DSM V as ‘disruptive mood disregulation.’ 

Children who are diagnosed with bipolar disorder often receive other diagnoses, including ADHD, oppositional defiant disorder, post-traumatic stress disorder, attachment disorder, executive function disorder, sensory integration disorder, and autism spectrum disorder. By the time my child was six years old, she had been hospitalized at least twice and diagnosed with all of the disorders listed above, and probably more.

For many years, I was convinced that her prognosis was very poor. In bimonthly meetings at the psychiatrist’s office, I learned that the early onset of my child’s extreme aggression, combined with the frequency of outbursts, pointed to a stronger likelihood that her illness would develop into adult bipolar disorder, as compared with children who had later onset or more mild symptoms. The few people whom I knew with adult bipolar disorder were unable to work and seemed quite disabled. When I argued that my child seemed neither ‘depressed’ nor ‘manic’, I was told that I was incorrect and that irritability was the hallmark of mania (and depression).

Since she was three, I have investigated and tried many interventions to address my child’s tantrums, aggression, social deficits, and hyperactivity, including sticker charts, Collaborative Problem Solving, multiple psychiatrists, therapists, and hospitalizations, at least 15 or 20 medications, two therapeutic schools, social skills groups, occupational and speech therapy, and more. Despite all of this, she attacked me many times, physically and emotionally, and was aggressive in public. Needless to say, she didn’t have any friends.

Nine months ago, the psychiatrist at a long -term psychiatric treatment program told me that I have to accept that my child ‘will never become a doctor or a lawyer’ because her illness is too severe.  This is a child who has expressed the desire to become a medical researcher.  I was outraged at the psychiatrist’s arrogance and I hope that she has a short career.

Fortunately for my daughter, she has a mother who never gives up.  During the Persian Gulf War (1990-1991), while living in Jerusalem, I learned to persevere in the face of uncertainty about the future. Despite the constant risk of biochemical warfare from a Iraqi missiles people went to work and carried on life as usual, carrying gas masks everywhere.  I learned to push aside the fear and the doubt and keep on trying.

After receiving the unwelcome prediction, 9 months ago, I decided that radical action was needed.  I discontinued the services that were not working or were making my child worse: the therapeutic day school and overnight camps, speech and occupational therapies and the antipsychotic medications.  I listened to my child when she said that she wasn’t being challenged at school, she didn’t need speech and OT, and she wanted ‘normal’ classmates. For an interim period, after withdrawing her from the therapeutic school, we tested the waters of reentry into the world of the non-mentally ill.  I home-schooled her and she gradually joined groups of home schoolers, then girls her age within our religious community. With each new group experience that she tried, I kept my cellphone close, in case her inappropriate behavior resurfaced. To my surprise, and joy, she made friends and discovered that her social skills not as inadequate as we had thought.

My daughter’s bipolar disorder seems to be gone. She is thriving at a private school, not special education. She is achieving high grades and is making friends.  Sometimes the experts are wrong.

Our guest blogger, Rachael Wurtman, is in private practice as an Mental Health and Autism Spectrum Advocate, who advises parents about and advocates for  interventions and services, at schools and in the community. She finds pediatric mental illness and autism spectrum disorder fascinating and is constantly learning as much as she can. She is trained in law and in child development and has chosen to give up the practice of law.

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