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.

Wednesday, April 20, 2011

From June to Peggy

Hello?  Calm, routine life?  Where did you go?

That is how I feel.  A few weeks ago, we seemed to be on a nice even keel.  I felt like a modern-day June Cleaver.  I would pick Dylan up at school (sans pearls) and he'd smile and say his homework was almost done.  We'd go home and as I prepared a healthy dinner out of the Carb Lovers Diet Book, Dylan would diligently complete his homework.  We'd all share a pleasant family dinner and then Dylan would trot off to bed, the melatonin quickly sending him into a peaceful slumber.

Okay, so I realized it wouldn't be like this forever, but I thought at least six months, maybe a year.

Nope.  In just a couple short months everything came crashing to a halt.  Literally overnight, the meds went from working all day to not even making it to after care.  I went from June Cleaver to Peggy Bundy (sans heels), while Dylan seemed to be on his way to becoming Bart Simpson.  Homework would go undone at school and it would have been easier to ask him to climb the side of the building and dance on the roof than it was to get him to sit still and do homework. 

After much angst, gnashing of teeth, and days when the pediatrician was unavailable, we finally decided to try a new med altogether - Vyvanse.  We are on day five, and while things are better...well, RockStar is in no danger of becoming Ward, and Dylan is not even close to being the Beaver.  

I know we aren't living an episode of Leave it to Beaver and we probably never will.  But I would like to be one of those family dramas where the parents works hard to do the right thing and the kids turn out okay in the end.  Like Family, or Party of Five, or even Parenthood.  I just don't make a good Peggy Bundy.  I'm terrible at teasing my hair.


In trying to find an appropriate foil to Leave it to Beaver, I found a great website called Crazy About TV.  It brings back such memories of old TV shows when I was a kid!  Well worth checking out.

Also check out Penny Williams on BlogHer talking about the Stigma of ADHD.  Go, Penny!

Monday, April 11, 2011

The battle of the bulge

News Flash:  Parenting Makes You Fat

Okay, okay, the real headline was a little less dramatic:  Young Children May Make Parents Less Fit.  But the meaning is pretty much the same.  So this is news?  I could have told them that with my vast (9 years) of experience. 

It's frustrating but true. 

I've struggled with weight most of my life.  I was born low weight - 5 lbs - but that was the last time anyone could have ever called me skinny.  Within two weeks, my weight was up and it has pretty much stayed there.  I'm sure that I ate more than my share as a kid but they didn't actually keep the cookies and junk away from me.  Adding to that was our family's general inactivity.  We didn't even watch sports much less play them.  The only sport my family watched was NASCAR - a sport you can do while sitting down. 

Between high school and marriage, my weight went up and down - up when I wasn't "on the market" and down when I was eager to meet someone. So naturally, after I got married, the weight started creeping up again.  About a year before I had Dylan, I joined Weight Watchers and got to my goal weight. 

Whether the lost weight regulated my hormones or just put me in the mood, I don't know, but shortly after getting to that goal weight, I discovered I was pregnant.  That was definitely the last time I was at my goal weight. 

I did get close to getting back there, but then Hurricane Katrina came.  What better way to deal with the stress of 8-ft of water in your house than through food?

Although life has more or less returned to normal (or new normal), I've never been able to regulate my eating or my activity.  I do exercise - Jazzercise twice a week and walking when I can.  But it's not the regularity I had before I had Dylan and not the the level I apparently need.  And although I eat well - lots of fruits and veggies - I must eat just enough more than it's not enough.  Rather than losing weight, it has creeped up pound by pound. 

The gods must be cruel.  Really, it should somehow be easier for moms to lose weight with kids not harder!  If you have to deal with a kid with special needs and a husband who wants to be a Rock Star, the least that could happen is that you get to fit in the clothes in your closet!  I mean, come on! 

I'm trying again.  Trying to get to that ideal weight or at least something like it.  At least enough to go shopping in my own closet.  I hope to report some success here on these pages amidst my other writings.  Stay tuned.

Sunday, April 10, 2011

Relishing the small moments

Sometimes it gets really easy for everything to be about ADHD.  It's especially easy when you have a week like we had last week, when Dylan seemed like he had an F-5 tornado caught up inside of him.  It's easy to get consumed by it, seeing only the challenges and disability and even projecting that forward over the years.

It's times like that you have to just stop and smell the roses.

This weekend, we did just that. 

For us, roses consisted of a skateboards and science experiments, movies and music.  With the exception of having to yell - loudly - in the grocery store because Dylan refused to stop pulling the cart hither and yon (it was late in the day), this was a "normal," ADHD-free weekend.  It was the kind of weekend I imagined having often when I had a child.  Things are different from what I thought they'd be.  Different, but not worse. 

My son is himself.  So uniquely himself.  This is a kid who was so thrilled to find the 5-video set of Star Trek movies at the Goodwill.  (Yes, we do still have a video player.)  A kid who, even though he doesn't pull As in science, loves to do science experiments.  A kid who sits in a stadium chair amidst the revelry of the French Quarter Festival  quietly putting together and taking apart a Transformer over and over and over again, perfectly happy. 

Tomorrow, I'll be back on the beat again, calling the ped to make sure she gets back to me about his out of whack meds.  I'll wish there were easier answers.  I'll worry about how he did on Day I of state testing. 

But I'll carry this weekend with me.  A weekend of small, wonderful moments that had nothing whatsoever to do with ADHD. 

Wednesday, April 6, 2011

Fresh out of answers

I attacked today with verve.  I fired off emails to three of Dylan's teachers before 9:00am to find out if they'd seen any change in him.  Then I tried to leave a message for his pediatrician. 

But as often happens when you are charged up and ready to make a difference, I was stopped in my tracks.  Dylan's pediatrician is on vacation.  Since his psychiatrist is on extended leave and I don't feel comfortable talking to any of the other peds in the practice about this, I had to leave a message for next week.

I got a response from one teacher so far.  She said he's been really tired and asked if he had been up later than usual.  In fact, she asked if he'd been watching too much TV.  I hate how teachers assume so much.  Of course your kids watch TV in the evening.  (Dylan doesn't - he's not allowed and never has been, school year or summer.)  Of course your kids have the latest video game systems.  (Dylan doesn't - we won't buy one.) 

Then she reminded me that next week is state testing.  Thankfully, it's not the pass/fail test he'll take next year.  But it's still a standardized test.  If his meds are slipping, how will he ever get through four days of testing???

Worse than all that, this evening started horribly.  I picked him up at school and his first question was, "Can we go to Subway?"  I'm not sure why Subway has suddenly become a thing with him.  This is a repeat of several other school days over the past few weeks. 

Going out to eat anywhere is almost unheard of on a weeknight for us.  I just find there's too much pressure on the evening as it is to add a trip to a restaurant of any kind. 

Going out to eat is also unheard of since RockStar lost his job last year.  We did go for pizza on Saturday, but that was only because I had spent 10 long hours doing our taxes.  I deserved it.  AND, I figured it would quell the Subway requests.  I guess not. 

So I had to say no.  Besides the cost and the fact that it was Wednesday, he also hadn't finished his homework.  His response was explosive.  Crying.  Drama.  End of the world stuff.  He actually told me he was going to go live with the homeless. 

How can we wait until our ped gets back?  But what other choice do we have?  There's just no Answer Guide to all this.  No late-night ADHD clinic.  No ancient Chinese remedy. 

Tuesday, April 5, 2011


I've been having some ADHD days.

For some people that means that they've been forgetful.  Distracted. Unable to focus.

For me, it means I've been obsessed with my son's condition. 

Just a couple of weeks ago, we were on a good path.  While Dylan's grades didn't quite demonstrate his abilities, he seemed to be on the right track.  Homework did not take up most of the afternoon anymore.  He reported that he even finished some of his tests in the normal allotted time (and not the additional time allowed by his 504).  Evening behavior was generally good and morning behavior was excellent. 

I'm not quite sure what happened.

I first recognized the change last Wednesday.  When I picked Dylan up at school, he made a big deal about wanting to go to Subway.  I told him that was not possible, but that if he got his homework done, we could go for a Snowball or a Strawberry Frappuchino.  The way things had been going, it didn't sound like a huge offer.  I figured he'd finish up the last of his homework, and we'd stroll down the street. 

Boy, was I wrong. 

Finishing homework required a lot of coaching, cajoling, and downright nagging.  I was frustrated and wished I had never made the offer.  We did finally go, but later than I wished and I was completely on the edge by then.  Instead of a relaxed conversation on the walk down, I was tense, barking new rules and regulations.  I had had a delightful vision of the evening, and rushing to get a cold beverage before dark was not part of it.

Then, there was Thursday.

We - Dylan and I - had an opportunity to be a part of a focus group for our local children's museum.  They are planning to build a brand new facility and we are part of a group of parents and kids who will give them ideas and guide them.  Sounds great, hunh?

The focus group was great.  Dylan had a blast (it was at the current children's museum).  Things started to go south when we left.  Dylan got it in his head that he wanted to watch TV as a reward for behaving at the children's museum - nevermind that just being at the museum was a reward.

TV is not an option on school nights in our house, except in very limited situations - if you are sick or if a Christmas special that we don't have on DVD is on.  AND...he still had homework.  So not on;y was the answer no, but he had to finish homework. 

Well, homework did not get finished.  He was all over the place, and I finally gave up and told him to go to bed.

You'd think that the weekend would surely have gone better?  Not quite.  He had homework this past weekend, too, a somewhat new development at school. 

On Saturday, he had meds but they didn't seem to do much.  It took him at least four hours to do two pages of math.  Granted, he didn't quite understand it.  But he was also bouncing all around and picking his feet while doing it. By the end of the day, he had a meltdown over leaving the house to go get a pizza (something we haven't done in months thanks to our budget) because he had to shut off the TV. 

Sunday was worse.  He "only" had vocabulary so I didn't have him take meds.  Bad idea.  Vocabulary is usually a strong subject for him, but I didn't realize that he had about 15 pages of it.  I don't know if he got through five all day on Sunday.  I did let him help me plant a vegetable garden, but just for a little while.

Yesterday and today it was more of the same.  Instead of homework being nearly finished as it had been since the start of the year, he's been coming home with almost no homework done.  It's been clearly obvious that the meds are completely gone, too, by the time he gets home, making any attempt to do the homework almost fruitless. 

I asked Dylan tonight, "Why?"  "What has changed?"  In addition to the above, he has not been listening to me or his dad AT ALL.  You can tell him to sit down five times and he's still standing there.

He said that the medication is not lasting as long.  He's not sure if it's not working as well when it is in effect.  But I don't see how it could be.

So, for all of these reasons, I have been having an ADHD day.  Actually several of them, which means I think constantly about medications.  Should we up the dosage of this one?  Try another?  How will that work with Dylan not taking pills that aren't crushed or opened capsules. 

What about the Lindamood Bell tutoring?  Is it working?  Is it enough?  What more could I do?  Could we even afford to do anything else? 

What about his 504?  How should it be different?  How can I make the school provide him more one-on-one attention?  Is there a way to change how after care works so that more homework gets done and he understands it better? 

I'm furtively checking websites at work.  Distracted thinking about it while I'm driving.  Hanging my head in my hands when it's at its worst. 

I know my son is bright and creative.  But it's so hard to tell that while you're doing homework with him when he's in this state.  Are the meds the wrong meds?  Or do they just need to be stronger?

A call to his pediatrician (his psychiatrist, whom we just started seeing at the first of the year, is on extended leave) is on my agenda for tomorrow.  Stay tuned.