Tuesday, March 20, 2007

The Grand Apologia: Why I Give The Kid Medication

This is one of the stickiest subjects ever... Should parents give their children psychiatric medications?

I don't think I have to tell you that I'm not arguing against a straw man here, or at least, a singular couch-jumping, Xenu-loving man. Many people are strongly against giving their children these meds. I've been one of them, until I've lived being The Kid's parent.

We hear stories about young children on psychiatric medications, with diagnoses we didn't know exist in children. There are horrible tragedies which pop these issues before us like the recent murder of Rebecca Riley, the four year old in the Boston area who was overdosed by her parents with a decongestant, an atypical antipsychotic, an anticonvulsant and an antihypertensive. We hear stories like Rebecca's and are quick to judge, and to be honest on this particular case I am among the judgmental--because really, this is a case of child abuse, isn't it? But when I first heard about it, I was able to quickly divorce the abuse issues from the mental illness issues. There is not a direct syllogism that if a) she was diagnosed bipolar so that b) she was given meds so that c) she died, therefore diagnosing children and giving them meds will lead to death. There was abuse, a questionable doctor and a horribly chaotic family situation mixed in there.

But I knew what was coming. I've been looking around the blogosphere in responses to this, and sure enough, there were many connections between giving her psychiatric meds and her death. I'll link a few, here and here, but there are more. There are not a lot of, "what horrible abusive parents" in these blogs, but there is a lot of "what are people thinking by giving children medication at all." Blogs were not alone in reporting in this fashion, most of the television reports that picked this story up were quick to segue into the “should you medicate your child” discussion, as if a malicious, premeditated murder is somehow a natural consequence of giving a child medications for a psychiatric condition.

Not all parents are the Rileys. Thank god. But reading around about this story made me feel like people do think that if you give your child psychiatric meds, you are the Rileys. But I say to the internet (and all 3 of you who read this blog--hi mom!): We are not. See, the Rileys, left to their devises, could have murdered their daughter in any number of ways, and given her circumstances, her father's history of sex crimes, the horrible abusive home, etc. Also, pretty much any prescription med could lead to death when given in excess, but for some reason... But I'm getting off of the point. This is a long lead-in for the meat of this post: why I'm compelled to tell you how I came to give The Kid psychiatric medications. So, let me frame the debate.

There's this assumption that children given meds are somehow similar to someone that a person grew up with. You will hear, "my cousin, growing up, was a spaz, but now he's an accomplished attorney and he never had to take ritalin" or something similar. You don't often hear about "that kid who came to my school in fifth grade, and everyone hated him because he got in fights all the time, cried until he slobbered that one day after he tried to throw an eraser at our teacher, and then in eighth grade he turned into a total dirty stoner guy... And I don't know what ever happened to that guy. Hmmm."

I'm not talking about your spazzy cousin. I'm talking about mentally ill children. Real mental illness in children exists, and there is a vast difference between the child who is often offered up as "energetic" or "creative" or "poorly disciplined" and one who suffers from debilitating anxiety, hears voices, cannot control his rage, does not sleep, masturbates at 5 years old, is compelled by the belief that were he not to count steps and hand washings he will hurt his family. But in most debates I hear on the subject, people stick with the familiar: highly active children vs. ADHD. ADHD is bandied about to the point that it sounds like every kid could be diagnosed with it. And while that's entirely possible that it is over diagnosed, it really does a great disservice to the kids who have it so severely that it hinders their ability to function.

I'm not the greatest fan of the diagnosis. I hate the figures cited that bipolar in children has increased 400% since 1990. An alarming figure, but it is a natural increase, actually, since juvenile onset bipolar disorder has only been included in the Diagnostic Statistical Manual-IV within the last 30 years. No mental health professional would say that the symptoms they list as consistent with bipolar didn't exist in children prior to 1990; it’s just that we didn't call it bipolar. A rose is still a rose by any other name. I would venture a guess and say that eventually, what we're calling bipolar in children today, will be split into different categories and/or called something completely different by future versions of the DSM.

So, if we take this discussion out of the realm of the "ADHD" vs. high energy child, the kids we all know, and into one of the child with serious issues of disability, allow me to describe why I believe The Kid fits into the latter category. Since he was born, he's been MORE. And I mean this literally, he is more of everything.
1. More wakeful: he slept no more than 1-2 hours at a time from infancy to age 12 months.
2. More stimuli-seeking: since he could walk and run, he has sought out deep-tissue contact (running from one end of a room to the other to ram into a couch, stool, person).
3. More distractible: certain environments (large rooms, crowded places--like a classroom) excite him to the point that I cannot get him to listen, speak clearly, or catch eye contact for more than 1 second, every time we are in one (as opposed to the odd time where he's been given caffeine or sugar or anything external that might cause excitability or distractibility).
4. More reckless and risk-taking: The Kid has always been a nightmare to keep safe: he’s been known to climb up tall bookshelves, stand on the edge of the kitchen counter like a diver (tippy toes only), and even once, on a vacation, he snuck out of our rented condo and was discovered on the outside of the railing of a third flood balcony.
5. More moody and sensitive: Prone to sudden swings of mood, this one is hard to describe. He will go from “I love you” to “I hate you and will attack you” in a moment. He will lose his temper, begin an inconsolable crying jag, or get so upset at himself for failing do something well that he hits and hurts himself at the slightest mention of bad news.
6-100. I could go on: more anxious, more easily frustrated, more suicidal and so on.

Now what you all need to know, see, is that The Kid I’ve described above is The Kid, at “typical” or “baseline” at home. He lives in a stable, loving home. He has never been abused or lived through any kind of trauma. I discipline him, set reasonable limits, provide a loving home with rules that he follows. I am a good parent, and his behavior is not based from the way that I parent, or the home that he lives in. I can say this with the utmost confidence because my parenting styles have been scrutinized by so many experts (social workers, psychologists, psychiatrists, teachers and even social services and police—the only people I’ve not had sniffing up my parenting butt are politicians and I suppose scientologists) in the past two years, and all of them have returned with answers of Wow, you do a really good job, mom. And while I’ve adopted suggestions from some of these experts (most notably using feedback from the schools to either allow or disallow certain privileges), I get a lot of support, and a lot of the comment, “Keep doing what you are doing.”

So, I described The Kid. But I described The Kid at “typical,” and at that, “typical at home.” We’ve not discussed “The Kid at School” Suffice it to say, he’s an entirely different child. If he’s “more” normally, he’s even “more-er” at school. At his worst at school, he is not teachable. When he was still in a general education classroom, they were flabbergasted by what they saw: a bright, quite possibly brilliant child, who could not sit down to even write his name. He is completely over stimulated in any environment with more than 6 children, he will not sit, he will not take direction or redirection. If he does not feel as though he can get help for his perceived problem at any given time, he will escalate to extreme violence, or he will run away. Truly, he resorts to fight or flight.

In September, when life really hit the fan for him, he was so anxious about what he would do wrong the next day in school, he would pace in his room, he would toss and turn, and at only 6 years old, try to function on less than three hours of sleep. He trusted no one. He thought that people hated him, that certain teachers and staff at his school were out to get him. He reached what under the constraints of ‘bipolar disorder’ is considered mania. He would speak in extremely fast, slurred spurts of unintelligible words; he would jump from action to action, unable to finish anything properly, but wanting desperately to do it all.

Seeing that behavioral changes were not working, or had not worked, after all of these years, I was at a complete loss, and turned to doctors. But before I turn my sights on the medical community, I want to finish up with schools.


I think schools have a great deal of responsibility in this debate, and while I agree that parents bear the greatest accountability to their children's health, there is enormous pressure on parents from schools, more so than from any other single institution.


And this, I think, is the ultimate double-edged sword. In the 1970's the Individuals with Disabilities in Education Act was passed into law. It was an awesome feat of civil rights, winning children with disabilities the entitlement to free public education, and at that, a free public education that catered to each child's unique needs. It also set in motion the procedural documentation that is now necessary in order provide those services: read this specifically as diagnoses.

What I think a lot of people don't realize in the boom of mental illness diagnoses in children is a direct result of parents and schools trying to cater to children’s educational needs under the constraints of their own system. In order to qualify for special education services, kids need a diagnosis. Schools cannot diagnose children. Do you see where I’m heading here? We have to go to doctors for these diagnoses.

I’ve tried to find a definitive source for the average age that ADHD and bipolar is diagnosed in children. Some studies I’ve found state 6, Kindergarten aged, and others state 8, or 2nd grade. Regardless, I don’t think I’m grasping at straws to suggest to correlation to the beginning of school and the diagnosis of mental illness in children.

Regular classrooms cannot handle children with special needs, let alone severe special needs, because of the pressure they have to perform. In this age of results-based teaching, when a school is pressured to prove their “accountability” to teaching their students to tests, special education is a key component to tease out kids that can cause poor scores. Perhaps I’m too cynical, but I see this happening all over the state of Colorado. I recently got a letter from The Kid’s school district listing the percentage of “acceptable” C-SAP scores from last year. The district received passing scores in all demographics except for ‘limited English proficient’ students and ‘IEP’ or special education students. It is nice that they can exempt these students from the rest of their results, is all I’m saying. And isn’t nicer to identify these kids before they gum up your scores?

That’s perhaps a little unkind to actual, classroom, day-to-day staff and teachers in our schools, but the movement exists, and for now it feels inexorable.

But let me get back to the pressure on parents to seek a diagnosis, and to whom parents must turn for these diagnoses: mental health workers. Oy. I live in a big city, with lots of mental health professionals and facilities, even for kids. And I’m lucky. But even with all of these folks out there, there are really very few choices. It is difficult to find a psychiatrist or psychologist at all, let alone one that you trust or that will grow a good, professional relationship with you and your child. Their practices are filled to exploding, and you are lucky to get an appointment in a timely fashion. When you do find one, you are generally at their mercy. You can take their prescriptions or leave them, sure. But you rarely go to a psychiatrist without first being at your wits end. And then, you try the medication.

If, like us, you are put through a slew of medications, some which cause side effects, some which only work for a while and then need to be up-titrated, work again until they need increasing again, etc…, you are still at the mercy of the doctor which prescribes you medication. When The Kid was in crisis last summer into fall, I spent three months attempting to find a psychiatrist who would see him at all. Once I found her, she plugged him full of drugs which caused him severe muscle stiffness, facial and somatic tics, drooling, confusion, and the horrible pair of sleeplessness and fatigue. By the time I realized it was imperative to find a second opinion, I was looking at one doctor who couldn’t see The Kid, even on an emergency basis, for six months, and many others who would not see The Kid at all.

The end result is that The Kid had to go into the hospital to be stabilized. And while I did change a few things about his home life (like disciplining at home for things that happened at school), the majority of positive changes that we saw come out of The Kid were due largely to the fact that he was finally put on the right medications. Medications allowed him to sit at a table and concentrate on a task long enough to complete it. Medications that allowed his body to slow down and obtain a healthy sleep pattern again. Medications that provide the stimulation in his brain that help him control his impulses and make socially acceptable choices with his actions.

The important thing is to note that The Kid's story is not in any way unique. There are families all over this country encountering this exact struggle, right now.

I don’t blame teachers. I don’t blame doctors. I certainly don’t blame parents, as I am so sympathetic to the struggle of parenting a severely troubled child. This is a broken system. Insurance companies tell us who we can see and when, not doctors. Doctors are so few and far between that their practices are jam-packed with kids that they barely know, and must make life-altering decisions on their behalf in a monthly 20 minute appointment. Teachers are wholly underpaid and are pressured to teach to tests, and are not adequately trained to deal with kids that need accommodations. It's broken.

Sad huh? Welcome to my world.

15 comments:

Alison said...

Molly, I cannot imagine going through this with a kid. I've dealt with this stuff - certainly not as extreme of a case - on my own, and that's been so hard.

It is such a challenge to find a psychiatrist and a therapist and a medication regimen that works within the boundaries of the insurance regime as an adult, I can only imagine that the challenge is amplified a million times with children.

I finally found a psychiatrist and a medication that have worked for almost a year. But the therapist - the ongoing maintenance - is another story entirely. I gave up on it, to tell the truth. I'm tired of being told that I need to change my thinking without any tools to do that. And if I, who have a very low diagnosis, have this problem, how could a child possibly deal with that situation without a fully integrated support network from home to school to medicine?

I don't know if this is something that is available to kids, but in desperation for help, I recently started seeing a clinical hypnotherapist. Not on the insurance, but by far the best thing I've ever done for myself. So far, it's just allowed me to feel centered. I've never felt centered that I can remember. I keep thinking there must be something that can be done with that to help kids out too.

Just some (long) thoughts...

Bonnie said...

Molly,

I am so glad that my beautiful nephew has such a passionate, articulate, loving, and wise mother. I'm honored to be your sister.

Love,
Bonnie

Sarah Dawson said...

Dude, I'm honored to be your friend. And you know I've always thought you were a wonderful parent--the best. The Kid is SO very lucky that you are his mom. You'll find a way to get him through this.

andy said...

Hey - great post!

One thing that has helped our kids with their issues (Fiona has dyspraxia and Ewan has some sensory and feeding issues) is to supplement with high-quality fish oil. It takes a few weeks of providing it for it to build up in the brain, but it has helped with some of their issues tied to the way certain parts of the brain coordinate with one another.

I've no idea if it will help here, but I did see some search results on "bipolar and fish oil." Anyway, I've no objections to medication, but I also look for more natural ways too (as I am sure you do too, so thought I would throw out the fish oil thing).

Anyway, if you're up for a beer to talk about delightful yet wonky kids, let me know. ;-)

Diane said...

Horrible story with that four year old killed my her parents. She's gone, but at least she can't suffer any longer. Heartbreaking story.

I feel that many kids are caught early, but far too many slip thru the cracks. Doctors have to be at the forefront and parents need to be made more aware of things to watch for.

Medical and mental issues need to be caught early to ensure that the children have plenty of time to catch up. The larger the developmentally delays and issues, the harder it is to close the gap. Getting and keeping our children on track is key to their future.

Child Find helped us when Harley was little and helped a friend's child too.

I have to hand it to you Molly, as I don't know that I could talk about this so openly. I feel that your educating us and showing us the personal side of something that is still rarely discussed.

Keeping things hidden is what makes mental illnesses so hard to understand. We don't see or hear much about it and the public certainly isn't informed on the subject.

The Kid is very lucky to have you as a Mom.

me said...

Molls, I have been reading snippets of this for days. Just kow I did the whole thing.

Wowzas. People fucking need to read this.

(On a side note, you kinda blow my mind, dude. You really are amazing.)

Liz said...

It's Liz from I Speak of Dreams. John L sent me over.

This is a great post. Yes, people need to read this -- the knee-jerk aversion to medication in some people endangers their children.

I posted a link to this post at the SchwabLearning Parents' Message Board, here. I know there are several parents with bipolar kids, plus a lot with ADHD. Your thoughtful, passionate post will be helpful to them.

Em said...

Molly, I'm a first-time visitor to your blog and I am blown away by this post. This is the most honest, unbiased, loving and understanding post about the issues of medicating our kids that I've ever read. I'm sitting at work at the moment..and I'm speechless. My wife and I have taken so much grief over the years - and been subjected to so many sidelong glares and unsought advice - all because we chose to have our son take medication. Even our families question our choices. But he would not be able to live his life without that help.

Thank you for your post. I will visit your blog often.

Kelly(Mom of 6) said...

Hey! I found you from Richard's and I so feel your pain..I have lived in your world. I have 6 children and all of them, including their father and I ...have ADD...oh yeah. Which actually made it easier, eh..in some ways...and I medicated too, for a time. We were able to discontinue meds after a whole buttload of counseling and me getting us organized and on a schedule..and now they are pretty much grown and doing pretty good.

Don't let the naysayers bring you down.

Special Edd said...

You have created a very special blog!
Thanks for letting me link to yours.

Special Edd

Anonymous said...

While I understand your viewpoint on the issue consider this: How did kids get their psychiatric medications before they existed?

I'm an adult now (with a psychology degree no less), but I used to be a child on psyciatric meds, and while I dont know how it feels to be a parent of such a child I do have some insight on the other side. In a nutshell: I really wish my parents hadnt done that to me.

I dont know your situation, but to a child here's what you're saying: You are wrong, your feelings and thoughts are a mistake, you need to be fixed, you need to be like everyone else. You dont need to understand why, you dont need to know how, just take this and everyone will like you again.

Drug use is drug use, and weather you're smoking a joint to deal with the stresses of the day or popping a paxil you arent adressing the thing causing the issue. If the thing causing the issue cant be changed then at least you can get stronger and learn to deal with it rather than relying on a crutch. Children are remarkable with the versitility and ability to adapt to situations and childhood is a key time to develop their natural coping skills.

The whole chemical imbalance line is a crock as well. The human body naturally regulates is chemicals. Your dog dies and you might show an "imbalance". Doesnt mean there is something wrong with you, just that the things in your environment can have an effect on your body and mood. That should be a no brainer, it's called life.

Also, the medications you're giving your son are in effect telling his brain that it can be lazy and possibly atrophy. The brain is no different from an atrophied muscle; Dont use it and you'll find it weak and unable to do its job when the time comes on its own. All the chemicals you're putting into him can be made by his brain, but you're cutting down the chances of that happening by always having a handy outside source to draw from.

The wors part about the meds: After a while you're so muted and apathetic you dont even care that you're muted and apathetic. We arent all the same, and it's a shame that society can't deal with that. Ever read Harrison Bergeron? I feel that finally I've come to terms with being bipolar and I wouldnt trade it for the world. Yes the swings are strange, but they're MY strange, they're my way of seeing and interprating the world. With a little self monitoring I can navigate and contain via internal dialogue what would normally be treated with pills. It might not be the easy route, but again, that's life isnt it?

molly_g said...

Anonymous:

I don't consider medicating easy. Nor is it all we do. The Kid is in a therapeutic school, because he cannot function in any other school, with or without meds. He goes to therapy weekly. We've instituted a number of behavioral plans at home and at school.

Medication is not a cure. It does not rid The Kid of all mental-illness symptomology. He still has a very difficult time. He has shown that when he is unstable, he is unable to keep himself safe. Yesterday, he called me a fucker and had an enormous public rage explosion. I can honestly say, however, that once we found a good medication for him, we see a lot less of this, or at the very least, he can settle himself down a lot faster and get to the bottom of what his emotions are telling him. In short, it helps him function enough to learn how to function amid his constant struggles.

I understand what you are saying about individualism and society telling us how to behave "normally." I agree to an extent, but the behavior that The Kid displays is not safe to himself or others, and no amount of individualism can justify that.

I do have grave concerns about long-term use of medications. I would have the same concerns of any medication that I gave my son. It is an issue that I discuss regularly with his doctors. But were I to medicate my son for diabetes or another "accepted" disease, I would encounter no opposition.

You mention the messages I give him by medicating him, but I wonder what kind of messages he would receive from me and from the larger world were he not medicated, if he were to function in this world as he did last fall when he was anxious, depressed, angry, violent, having self-destructive thoughts and beginning to display self-destructive behaviors. He expressed desire to kill himself on a number of occasions.

I've never associated my love for him with his taking medication, he does not see my love as dependent on anything, it is unconditional and he is well aware of that. That is my job as a mother, and I can tell you that I am damn good at that.

Mental illness is a highly personal issue. I commend you for the hard work that you have done in working with being bipolar and "owning" your bipolar. I also understand that you have your history and reactions to meds and I do appreciate you sharing them with me, but these things do not apply to every situation. Your bipolar is not The Kid's bipolar.

Thanks for reading and sharing.

Philip said...

What a moving, intelligent, interesting post.

I know very little about the subject and just stumbled across your blog but I will certainly be back for more!

Take care,

Philip
http://www.disabilityblog.org
http://www.disabled-help.org

Janice said...

Thank you so much for this post. I am a special education teacher, and I don't have words to express what this post did to help open up the world of being a parent of a child with special needs. I have worked with many parents who have faced this same dilemma...to med or not to med...and I've been torn over the pros and cons right along with them. But you have so clearly captured the struggle between a broken educational system, a less-than-functional medical system, and the families who get caught in the middle. I admire your persistence, dedication, and education. Thank you for helping me understand the parenting side of things a little bit more.

PS What an eloquent response to the post that disagreed with the use of meds!

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