Sunday, April 24, 2011

Where Are the Answers?

Wikipedia reports that ADHD is the most commonly studied and diagnosed psychiatric disorder in children, affecting about 3 to 5 percent of children globally[4][5] and diagnosed in about 2 to 16 percent of school aged children.[6] (My apologies - I recognize that Wikipedia is not a great source and I do have the access to look up the original sources, just not where I am right now.)

My question is, if it's the most commonly studied childhood psychiatric disorder, why don't we have more answers?

Russell Barkley, an authority on ADHD, demonstrates in his seminal book on ADHD (Taking Charge of ADHD) how the disorder has been recognized for more than a century under different classifications.  Using medication, specifically stimulants, has been a primary method of treating it for more than 50 years.  Yet, despite this history, we seem to know precious little about the disorder and we have a tremendously haphazard approach to it.

I'm blessed that I don't have a ton of experience with many disorders or diseases.  But twenty years ago, I feared that might not be the case.  At that time, I had many signs and symptoms of Lupus.  The standard testing for the disease in the early 90s was not perfect and, in fact, I tested "positive."  The rheumatologist warned me, however, that there was a high prevalence of false positives and I could tell that he didn't really think I had it despite the fact that he couldn't seem to find a solution for my debilitating fatigue and arthritis symptoms.  Probably five years later, I was tested again.  In the intervening time, the tests had become much more reliable and it was confirmed that I (thankfully) didn't have Lupus.  In fact, we discovered that the symptoms were an unusual side effect from a medication I was taking for severe acne. 

Why have we not made such strides in neurological disorders?  Is it because testing involves some sort of brain scan and not blood testing? 

The stat that Wikipedia shares, that 3-5% of children globally are affected by ADHD, is common knowledge these days.  The global percentage of Lupus is 0.07%.  Yet, in only those five years, great strides were made, and, in fact, there could've been more in the intervening 15 years.  But we just don't seem to have enough "ah ha" moments like this with ADHD. 

As a parent of a child with ADHD, who will be affected by this disorder for the rest of his life, I'm angry and frustrated.  Why isn't more being done?  Why do we have to put our kids through so many different drug trials?

It's common knowledge that medicating a child with ADHD is trial and error.  Pick one and if that doesn't work, change the dose or change meds.  When then stops working six weeks, six months, or six years later, go to another med.  Most parents find that over time, the meds stop working.  And even when they do work, there are the side effects, like the rebound that keeps kids from sleeping or makes them difficult to deal with when the medication wears off. 

I would say that it's a pharma plot, except for the fact that if the meds were better and worked better, the kids could reliably stay on them much longer.  Wouldn't that be good for the pharmaceuticals? 

I can't help wondering if the lack of knowledge and progress is due to the continued controversy over the disorder itself.  So many still believe it's fake.  These are obviously people who have never spent any real time with a child suffering - and I do mean suffering - with this disorder. 

When Dylan was diagnosed, the psychologist recommended CHADD - Children and Adults with Attention Deficit Disorder - as a resource.  I've been less than impressed with this organization.  I feel as though every time I turn around they are asking for money.  Money for membership, money for classes, money for the national conference, and money as an end-of-year donation.  Yet, I don't see a lot of results from them.  I don't see them out there trying to dispel myths among the uninitiated.  They don't need to dispel any myths with me.  It's the world at large that needs to know.  When I search their site, I come up with little new information.  Shouldn't they be on the idea of the American Cancer Society, funding research and promoting knowledge?  Shouldn't they be pushing for answers, better protocols, better meds?

Someone has to.  Someone has to make it easier for the children and their parents.  There should be some sort of protocol related to ADHD, in terms of how it's diagnosed, who children should see, and how medications are delivered.  There should be a way to determine what would work best for a particular child. 

Right now, in diagnosing ADHD, kids could see a pediatrician, a psychologist, a psychiatrist, a neurologist, or a neuropsychiatrist.  Any of those, with the exception of the psychologist, could prescribe medications.  The tools used in diagnosis vary from a questionnaire filled out by parents to a whole battery of tests and in-class monitoring. 

I fully recognize that our haphazard insurance "system" plays into this.  What one insurance covers, another won't.  And that has to change.  The cost of diagnosing and treating ADHD may be high, but what about the costs of not diagnosing it?  The lost potential of a child?  Of many children?  There are people fighting for unborn children, but I say, what about the ones we have?!  I think we focus on the wrong things.  Prioritize the children we have on this planet. 

Financially, the loss of staff hours when a parent has to deal with ADHD issues is another hidden cost of the disease.  Better methods of treatment and management would mean fewer work hours lost.  But we remain penny wise and pound foolish.

The medical community needs to get over its own prejudices about this disorder and come up with some answers.  We have made incredible strides in so many diseases.  It's time for ADHD.  Our future, and the future of millions of intensely creative children, depends upon it.

1 comment:

  1. Nice to meet you. I'm blogging about this stuff also. Let's stay in touch. Cheers.