Tag Archives: psychotropic medication

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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Growing up on medication

April 30th, 2012

Most parents know that the topic of psychotropic medication is charged with emotion.  Everyone from your friends to the anchor on the evening news seems to have not just an opinion, but a judgment.  This month a new book, Dosed: The Medication Generation Grows Up hit the bookstores.  Kaitlin Bell Barnett, the author, argues that American society needs to start listening to the people with the most credibility — the generation who grew up taking these medications.  She says we need “to stop bickering about whether or not kids were “overmedicated” and should, instead, listen to the people best positioned to comment on the subject – the generation of young adults now in their 20s and 30s who spent their formative years taking the controversial drugs in question.”

For her book, Ms. Barnett interviewed several young people in their 20s and 30s.  She tells their stories and explores some of the issues they face, including the impact of medication on a developing child’s sense of self and the toll taken by medication trials and side effects.  Some felt they had little input into the process of deciding to use medication or weren’t told why they were being given a particular pill.  Some grew up to reject medications while others continued taking them.  There is no single experience and there is no consensus.  However, there is a strong, compelling voice added to the debate whether the benefits of medication outweigh the negatives.

Several of the points made in Dosed reminded me of the 2008 PPAL study on psychotropic medication.  While we were going to survey only parents on this topic, we were also able to survey almost 70 youth and hold three youth focus groups.  These young people were 12 to 19 years old, younger than the group interviewed by Ms. Barnett.  But some of their worries about side effects and frustration with unclear information were very similar.  Parents who were surveyed also reported that their insurance was more likely to cover med checks (76%) than therapy visits (53%).  Ms. Barnett also makes this point.  She says that Medicaid and private insurance are “both eager to keep costs down, and therefore preferred relatively cheap psychiatric drugs to long-term talk therapy (despite a growing medical consensus that the most effective treatment for most psychiatric conditions was a combination of medication and therapy).”

For the first time, there are millions of young adults who took one or more psychotropic medication during their growing up years.  In the 9 years between 1987 and 1996, the number of youth under 20 taking at least one such drug tripled, going from 2% to 6% — an increase of at least one million children nationwide.  In 2009, 25% of college students were taking psychotropic meds, up from 20% in 2003, 17% in 2000, and just 9% in 1994.

Many parents report that their children vacillate from opposing meds, to reluctantly trying them, to seeing the positives and negatives and then back again.  Parents, too, often have mixed emotions.  They seldom make the decision to use psychotropic medication for treatment in a neutral, stress-free environment.  They receive conflicting messages not only from their children, but from their extended families, schools and society at large. 

Kaitlin Bell Barnett offers advice to parents, garnered from her own experience and observations. Strong, clear communication is essential, she writes.  Even more essential is taking the time to listen to your child’s feelings and thoughts about medication.  She urges parents to explain why the medications are needed and include them in decision making as much as possible.  She counsels parents to listen to their children’s worries and attitudes about medications and find a therapist who is willing to talk about this topic.  She notes that resisting or rejecting medication is common but parents can mitigate it by having a trusting relationship with their children.

I’ve often said that the most important thing parents of a child with mental health needs can do is nurture and value the relationship they have with their children.  In our medication study, youth told us that while they like speaking directly to their prescribing doctor, they relied on their parents for information and a better understanding about medication. It’s still a highly charged subject.  The best thing we can do is to listen to each other.

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My Top Stories On Children’s Mental Health In 2010 — What Are Yours?

January 1st, 2011

We are all looking forward to 2011, making our resolutions and hoping, as we always do, for a better year. The end of the year is also the time when we look back before we look forward. There were many events in 2010 which will impact all of us who parent children with mental health needs or work with them and their families. Here are my picks for the top stories. What are yours?

#1. The health care reform law passed and began to offer protections for consumers across the country and the promise of coverage to the uninsured. The passage of the Affordable Care Act was signed into law by President Obama in March and some portions of the new law are already in effect including that young adults can remain on their parents’ insurance plans. The law requires mental health to be covered and people cannot be turned away or dropped from coverage because of pre-existing conditions. Although Massachusetts has had health care reform since 2006, many families have insurance that is solely regulated by federal law and this will change things for the better for them.

#2. Federal mental health parity was an under-the-radar story which will also have a major impact. The new federal mental health parity law, enacted in 2008, went into effect in 2010. For the first time, mental illness must be treated by insurance companies in the same way as other chronic conditions, like diabetes and hypertension. Parity is incredibly important to those affected by mental health condiditons, yet it was not widely noted while health care reform was debated. Again, while Massachusetts has had a mental health parity law, many families will only see changes under federal parity.

#3. Following an outbreak of LGBT teen suicides across the country , columnist Dan Savage launched the “It Gets Better” campaign in September, which lets gay teens know that if they hang in there, life will improve after high school. It’s a brilliant campaign and thousands of people (both celebrities and regular people) have posted personal stories on YouTube in an effort to offer hope to countless LGBT youth worldwide and shine a spotlight on the harm caused by bullies. LGBT youth are up to four times more likely to attempt suicide than their heterosexual peers according to the 2006 Massachusetts youth risk survey.

#4. The bullying and subsequent suicide of Phoebe Prince in January went from a local tragedy to an international media storm about bullying in schools. The tragedy of her death came just months after the suicide of 11-year-old Carl Walker-Hoover of Springfield and galvanized advocates, lawmakers and the media to advocate for change. In April, the Massachusetts Legislature passed a new law mandating that every school system in the Commonwealth come up with a plan by the end of the year for dealing with bullying issues.

#5. Another local event which captured national media attention was the trial and conviction of Rebecca Riley‘s mother (in January) and father (in September). Rebecca Riley was found dead on the floor of her home in 2006 from the combined effects of Clonidine, Depakote and other medications. Each of her parents was found guilty of murder. Many national and local reporters wrote and narrated stories that doubted the existence of mental health issues in very young children as well as the use of medication. Unsurprisingly, a complicated situation was pared down to a discussion of mental health, medication and young children.

#6. One of the most important stories of 2010 never got media coverage. The first full year of the implementation of Children’s Behavioral Health Intiative, although imperfect, continues to provide Massachusetts families with home and community based services on a previously unheard of scale. Nearly 70% of children and teens are receiving behavioral health screens at well-child visits, and almost 6500 children and youth have received care coordination with nearly 19,000 experiencing at least one of the new remedy services. Families report that they feel they are considered a partner in their child’s treatment and are particularly satisfied with the services provided by a family partner. What is striking is that while other states have created similar services, none has done it on such a scale. CBHI is available across the state to children with signicant mental health needs on MassHealth.

#7. In October, the Boston Globe reported that many children are deemed “too acute” by some hospitals when asked to consider an admission. Children and teens who are violent, hallucinate or have complicated psychiatric histories are most likely to be turned away. Just last week I heard a story of a teen waiting in an emergency room after being turned away from hospitals in Massaachusetts and two other states. Sounds like a story we’ll hear more of in 2011.

These are my top stories. Did I miss any or are there any that should not have made the list?

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Parents, Children and Psych Meds

December 3rd, 2010

According to PAL’s most recent report, parents rated psychotropic medications the most effective treatment available to their children. A number of people have been pretty surprised. “Really?” they asked. “Why would parents say that?” Treating children with psych meds for attention, mood, behavior or other mental health conditions generates lots of strong opinions, rhetoric and even judgement. Much of it is negative; it seems no one really expects parents to say anything positive.

But parenting is a practical endeavor. Parents want their children to be successful in school, be able to manage their emotions, have rewarding relationships with their peers and family and most of all, be pain free. Parents look for things that work and help their child do better whether it’s structure, a strict diet or medication. We try out different options but end up making choices based on results. Studies show that stimulants work for 70 to 80 percent of patients who need them and anti-depressants for 60 to 80 percent.

In an interview about her book We’ve Got Issues, Judith Warner says that we’ve been talking for the last 10 years or so as if children are routinely being over-diagnosed and overmedicated and lazy, competitive parents are basically acquiescing and pathologizing and drugging their kids in order to give them a competitive edge or in order to save themselves the time and trouble of real parenting. She goes on to say that this is not only false, but also really hurtful. It can actually keep kids who need mental health care from getting it when parents internalize these messages and worry about fitting those stereotypes. They can question themselves and their own instincts about whether something is going wrong with their kids. And this doesn’t benefit anyone.

There are often high expectation for our children. Schools often hold students up to rigorous attendance standards whether or not they have mental health needs. If a child is depressed, fearful or has just returned from a hospitalization, he or she is still expected to show up at school. They are also expected to focus, and behave well. These results are expected by schools, and everyone else, to occur in a very short amount of time. Long gone are the days when children had time to stay home and recover from an episode of depression.

Most parents want their children to stay home and receive care in their own community. We want our children to be part of their family and be able to have a healthy relationship with their siblings. Sometimes medication, hopefully in tandem with other treatment, is what makes this possible. And sometimes, it’s all we have.

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