ADHD - Q&A

Several commenters had questions this week, so Hayden and I are going to take a few minutes and try to answer them!

I'll let Hayden go first.

Q:How do you feel about taking meds

A: Well using medication is something that I have thought about  quite a bit. At first I was and still kind of am resistant to the idea that a man made foreign chemical was going to mess with me. I found the idea to be repugnant and made fierce protests towards the very idea of it. When my parents mentioned the fact that I may be medicated I had a breakdown I felt betrayed by the fact that my parents were not allowing me to make the decisions regarding me myself and I was positive that the medication would change me. I made plans on how to avoid taking them and fought them most every step of the way. Today though I would like to mention that the fact of the matter is the chances I would have been able to write this unmedicated so soon are slim. The medication has helped me in a couple ways and I can see a that my life is different in a lot of positive ways. Despite this I wouldn't mind being able to go without the pills.

Q:Do you feel different when you're off your medication?

 A: To put it bluntly yes. Now I will attempt to elaborate. When I'm off my medication, it's actually kind of fun.  Imagine you are on a sugar high, drank too much coffee and took a 5 hour energy drink and multiply that by as far as you can imagine it - that probably a little bit of how I feel.  Without the medication I can literally fell the energy coursing through my veins I live in the moment and I feel free and don't consider my actions.

On the other hand if I'm on my meds I have more self control and am not quite as impulsive also I interact with others better and am more capable of making good decisions about my future. For example unmedicated I may blow the idea of collage and my later career and go mess around, but medicated I am capable of considering what I want to do later and focus on having the future I want. The medication while not as fun now (as compared to being unmedicated) will let me make decisions that will give me a happier future.

There you go:  Hayden unedited.  Now for my turn:

1)  How did you find a Behavioral Therapist and were you involved in any of those sessions?

She is actually a psychologist who works with our pediatrician so we just kind of lucked into working with her.  I went to all of the sessions because a lot of what she had Hayden do (i.e. breathing exercises, mental visualizations, etc.) required practice that we helped with.

2)  Is medication for life, or can some people be weaned off of it?

Some people do "outgrow" ADHD and/or learn enough coping skills that medication is no longer necessary.  Others continue to use medication for life.  I'm hopeful for Hayden because his primary symptoms are hyperactivity and impulsive behavior that he may indeed get a handle on those by adulthood.  I think the kids who have major focus issues have a harder time.

3)  How soon do symptoms return if you forget a days medication?

There are different formulations that last from four to 24 hours.  Hayden's lasts for about 12, so if he doesn't take it first thing in the morning, it's readily apparent.

4)  Do the medications work 100% of the time now that you've found one that works or are there some better vs worse days?

I think everyone has good days and bad days and Hayden is no different, but I don't believe they're attributable to his medication. 

5)  Knowing what you know now, can you recall early signs of ADHD from when Hayden was younger? If so - how young and what kinds of signs?

Ha!  Yes, looking back it is very clear that we missed a lot of signs.  From the time he could crawl (6 months) I've said that he has two settings:  "High" and "Off".  At age three I took him for a hearing test because I thought the reason he wasn't paying attention to me was because his hearing was bad.

Nope, his hearing was just fine.  Now I can see that he was "hyper-focusing" which is a hallmark.  People with ADHD are able to focus on something and completely tune out all distractions - including mothers.  He also definitely had the acts "as if driven by a motor" symptom.

From the list of symptoms here he has all of the signs on the Impulsive chart, and 4/5 of the hyperactive symptoms  and has for as long as I can remember.

I guess we missed it because I didn't want anything to be wrong and because I was going on what I thought ADHD was (unfocused brats) without bothering to discover all the symptoms.

6)  I didn't realize Rich had it as well. That's really interesting. Are you going to talk about that as well? About being diagnosed as an adult? Are the treatments different for adults?

I had been telling Rich for years that he had ADHD, but he did not go in for testing until after Hayden was diagnosed and we learned that ADHD is very often an inherited condition.  The results were not surprising and explained a lot.  For instance, Rich has always been very impulsive about spending money.  He took 10 years to get through college because if a class didn't interest him, he wouldn't give it his attention and drop it or get a bad grade.  On the flip side, Rich is a major hyper-focuser.  He got an A in any college class that he liked - including some that most people struggle with or even fail despite putting forth great effort.

Rich has chosen not to pursue treatment for his ADHD.  He figures that he made it 30+ years without knowing he had it, and so obviously he's coping.  And he is.  He has a good job, is married and raising a family and paying a mortgage.  It should be noted though, that he has always struggled with addiction.  He has chewed tobacco and/or smoked since age 15 and he consumes crazy amounts of caffeine - probably as a way of self-medicating.

ADHD - Making Decisions Part IV - Winging It

Every single child on the planet is unique.  Doesn't that just blow your mind?  So many combinations of looks, personalities, skills, disabilities . . . enough to create billions of people completely different from one another.  To add to the variety, God gives each child a set of parents, possibly some siblings, a home environment, an educational experience . . . the variables are infinite.

So it stands to reason that there is no cookie cutter approach to raising any child or dealing with any "problems" that may crop up in the process.  Rich and I have found this to be true in raising all of our children but perhaps most especially with Hayden.

That kid is one of a kind to be sure!

In addition to the standard treatments we've chosen for his ADHD that I outlined yesterday, we've done some things on our own that are pretty much just Rich and me winging it.

1.  We set him up for success.  Once we understood what Hayden struggles with, we talked with relatives and friends so they could get what makes him tick and we avoid sticking him in situations where his is doomed to fail.  Sitting through long graduation ceremonies, browsing at the mall for hours, socializing with adults in fancy living rooms . . . those are all situations we avoid because Hayden is pretty much going to get in trouble.  It's inevitable.

2.  We don't let him be weird.  When Hayden was little he was had some odd behaviors that started to look like OCD.  We just didn't allow it.  When he freaked out about germs and wanted to wash his hands all the time, we didn't let him.  He was allowed to wash after using the bathroom and that was it - even if he'd done something that made his hands dirty.  He could panic all he wanted and we ignored him.  Eventually he learned to deal.  It sounds cruel, but it worked.

3.  Tae Kwon Do.  I would recommend physical activity for any kid with ADHD.  It helps them burn off extra energy and be loud and rowdy in an acceptable way.  For Hayden, TKD was the perfect sport.  It requires concentration, discipline and respect while providing great  exercise. 

4.  Getting on the same page with his teachers right from the start.  This past fall was the first time I did not start the school year with a letter to Hayden's teachers.  He's pretty much past that need but prior to this year, I wanted to educate his the adults who worked with him before he got to school.  I did this by sending out an e-mail to all the teachers on his schedule.  The letter varied from year to year but I always listed very specifically the behaviors that Hayden struggled with and why.  I didn't want them to be surprised or have to wonder why he couldn't follow directions or sit still.  I made sure they understood that he should be respectful and do his work - we weren't trying to excuse, just explain.

After going over his challenges, I'd try to give the teachers help.  Here's an excerpt:

 Hayden does have a lot of things going for him.  He's smart and has a keen sense of humor.  He loooooves to read anything and everything and has a very creative mind.  He is steadfastly loyal and really does  like to please others.  In fact, you'll have the best results with him if he thinks that you like him.  He doesn't do well with teachers who take the "you must earn my approval" approach.  He does much better if he's trying to keep affection and approval.  He also responds well to physical touch.  Feel free to pat his back or rub his shoulder or even  hug him if you feel comfortable.

For classroom management you may consider the following:
-seat Hayden where his movement will cause the least amount of  distraction for others.  Some teachers like him up front where they  can keep an eye on him.  Others prefer him in the back where he is less distracting.  Do whatever works best for you, but definitely a seat at the end of the row or on a corner works best for the sake of the kids who have to sit hear him.

-Don’t engage in arguments with him.  You won't win.  He can hijack a classroom discussion before you’ve even realized it.  Set up a signal that will let him know it’s time to shut up.

-Recently we have been experimenting with letting Hayden doodle with pen and paper during times when he is supposed to sit still and listen.  We find that this gives him an outlet for his physical and mental energy while still allowing him to pay attention to lectures  and discussions.

Above all, please keep us informed.  You may reach us by e-mail at
all times or by phone in the evenings

We think the following links offer useful information.  If you have the time, please take a look.  They are not long.  Hayden's symptoms fall primarily into the "hyperactive" and "impulsive" categories:

http://www.helpguide.org/mental/adhd_add_signs_symptoms.htm

http://www.emedicinehealth.com/attention_deficit_hyperactivity_disorder/article_em.htm#ADHD%20Overview

Thanks for all you do.  We so appreciate the teachers in Hayden's life!

Sincerely,
Rich and Mindee

Without fail, each and every teacher responded positively and thanked me for the information.

5.  We expect a lot.  Regardless of what challenges any of our children face, we expect the all to be respectful, kind and responsible.  They all have chores and must do homework, turn in assignments and get the best grades they are capable of and they must do all of this without our help.  I've already been through middle school - I don't need to do it again.  We understand that for Hayden, some of these expectations may be harder than for the girls but . . . oh well.  He has to do it anyway.  We don't do him any favors by letting him get by with less.

Of course it's going to be at least 15-20 years before we know how successful all of this is.  I feel like we're on the right track and doing (mostly) the right things but the proof is yet to come.  Most parents are well intentioned and do the best they can but things don't always turn out the way we hope. 

Parenting.  It's a crap shoot.

I hope my posts this week have been helpful to someone or at least educational.  Hayden is working on answering some of the questions commenters left and I'll add my two cents when he's done and post the Q&A this weekend.  Then I'll move on and get back to regular programming next week.

Thanks for reading!

ADHD - Making Decisions Part III: Standard Treatment

As it turned out, as complicated as it was, getting a diagnosis was not nearly as difficult as coming up with a treatment plan.  I'm going to tell you what we did for Hayden but am in no way suggesting that this is the right plan for any other person on the planet.  ADHD is a highly individualized disorder and there are a myriad of treatments.  We went through a lot of trial and error to come up with what worked for Hayden.

As I mentioned yesterday, we decided early on that medication would be part of our plan.  According to many reliable sources, ADHD is a condition caused by a chemical imbalance in the brain.  Simply put, people with ADHD are missing neurotransmitters that can be replaced with stimulant medication.  I liken it to a diabetic whose body does not produce insulin.  Diabetics have to take insulin artificially to regulate blood sugar.  People with ADHD have to take stimulants to regulate brain function.

However, we did not want to be the parents who just hands their kid a pill and expects it to solve all the problems, so we also signed Hayden up for therapy.  He started out with a standard psychologist and while he very much enjoyed having an adult's undivided attention for an hour every week, we couldn't see that it was making much difference in his life.

Next, we tried a Behavioral Therapist.  Typical of many ADHD kids, Hayden also had some anxiety issues and mild OCD symptoms.  I really liked the BT because she didn't so much care why Hayden had certain behaviors, she just focused on modifying them.  She did this with really practical exercises.

For instance, in 5th grade Hayden had to start wearing glasses and it really freaked him out.  He hated change to start with and then he was just sure that everyone was going to make fun of him.  He flat out refused to wear them to school and his anxiety about it was so palpable that we just could not make him.  So the BT helped him break down exactly what his worries were and she tackled them one by one with simple tasks and immediate rewards.  Within three weeks Hayden was wearing his glasses full time with no worries at all.

We would have happily worked with that doctor for a long time, but of course, about then Rich's job switched health insurance companies and the Behavioral Therapist was no longer covered.  We tried bio-feedback next but Hayden thought that was stupid and refused to participate and when we took him to yet one more psychologist, he dug in his heels.  That doctor told us flat out that if Hayden did not want to be there that there wasn't much he (the doc) could do for us.

So that was the end of therapy.

Source

Through all these different talk therapies, we were fiddling with medication options.  Rarely, an ADHD patient will try a medication and have it work right away and ride merrily into the sunset.  More typical is our experience of trial and error and then more trial.

Here's how it works:  The psychologist makes a recommendation to the pediatrician who writes the prescription.  Then you give your kid the medicine and watch for side effects.  Assuming nothing life threatening appears you begin evaluating.  Is the medicine helping?  How much is it helping?  If it's making a bit of an improvement, the doctor will increase the dosage and you start evaluating again.  If there's no improvement, the doctor will switch to another medicine.

We went through two or three like this before we found one that worked well.  Unfortunately, after a few months, the effect wore off so we had to increase the dosage which helped for a while.  Then, once again it stopped helping so we had to start all over.  All together, it took two years to finally settle on a medication and dosage that works for Hayden.  

So the critics who claim that parents are just handing kids pills as a way of escaping responsibility have clearly not been through the process.  It's not like you can just walk into your pediatrician, get a prescription and have an instantly well behaved child.  It takes a lot of time, a lot of consideration and a lot of evaluation.

But it's worth it.

We ran into Hayden's third grade teacher the other night and she went on and on about how much he had changed.  He's a different kid from the one she knew.  Eight year old Hayden hated school, argued with teachers, didn't have many friends, was anxiety ridden, had poor grades and an excessively negative view of life.  Five years later, Hayden has straight A's, is well liked by all of his teachers, enjoys hanging out with peers, is cheerful and has optimistic plans for his future.

Standard treatment has a lot to do with that and that's pretty much what I've covered today.  This post is long enough though, so I'll quit for now. 

Tomorrow:  The Non-Standard!

In the meantime, Sarah asked some great questions on a post earlier this week.  I think I'll put together a Q&A and get Hayden in on it.  If you having anything you'd like to ask him or Rich or me, fire away.

ADHD - Making Decisions Part II: Diagnosis

Another thing about those annoying articles I mentioned yesterday?  Their insistence that ADHD is over diagnosed and that most of the kids who have the label are, in fact, just undisciplined.

Let me assure you, that receiving a proper ADHD diagnosis is no easy feat.  When we first decided to have Hayden tested we had to start with the pediatrician who listened to our concerns and decided that they warranted a referral to a psychologist.  The psychologist interviewed us to get background info and then gave us forms to have Hayden's teachers fill out and for Rich and I to fill out separately. (You can see a copy of a Connors Test here.)

Once all the forms were collected, Hayden spent an afternoon undergoing his own tests and interviews and then we had to make another appointment to discuss the results and treatment options.

The whole process was expensive, exhausting and time consuming.  No one would do it on a whim.  It was also very difficult emotionally, because we truly did not want anything to be "wrong" with our boy.  Who does?  I would rather have had the doctors tell me that I was actually an ineffective parent than find out that my son has a disability and label that he'll carry around for the rest of his life.

But labeled he was.  Pretty much off the charts actually, and so the next step was discussing treatment options.  If you Google "ADHD treatment" or anything related to ADHD, what you'll mostly get is sites that are run by people who are trying to convince  you that their treatment is the right one.  From pharmaceutical companies, to publishers, to chiropractors, to holistic vendors . . . everyone has an answer and it's up to the parent to determine which answer is the right one for them.

I'll be honest - I'm not really into the holistic scene.  I like modern medicine and I tend to be skeptical of claims that a certain combo of foods or vitamins is going to "cure" anything.  Help? Possibly.  Cure?  No.  But reading the list of possible side effects that stimulant medication can cause was daunting.

What convinced us that the risks of side effects were worth it were articles like this one that detail the risks of untreated ADHD.  In summary, due to the fact that so many kids with ADHD are likely to engage in risky, impulsive behavior they are at much higher risk than the average teen for drug use, addiction, sexual promiscuity and teenage pregnancy.  Given that Hayden's family tree has it's fair share of alcoholism already, that scared me.

So we sat down with doctors and crafted a treatment plan.

Tomorrow:  Working through the plan.

ADHD - Making Decisions Part I

I've been pondering doing a series of posts on this topic for a while.  I wrote this one this other night but Hayden needed to read and think about it before I got the OK to post it. 

I saw yet another one of those annoying articles this weekend.  The articles that talk about how today's children are too quickly diagnosed with ADHD.  They claim that kids are over medicated and that parents should just do their jobs and use consistent discipline instead of throwing pills down their kids throats.  They usually go on to talk about alternative therapies and diet and psychologists and somehow manage to make me feel like I've failed my son somehow.  Like I'm taking the easy way out by giving him daily medication.

Those articles make me grit my teeth and growl.  I would truly like to meet one of those authors.  Then I'd send Hayden to live with them for two weeks.

And only pack one week's worth of his medication.  

 For that first week, the author would enjoy my son.  Of my three kids, Hayden is the one most likely to follow directions the first time I give them.  He argues with me the least and has the best grades.  I'm sure they would enjoy his quick wit and ability to converse on most any subject.

Then the second week would roll around and the host author would find that Hayden's sense of humor can take a turn for the absurd and annoying.  He would stop following even the most simple and direct of requests. They would discover that Hayden can - and will - argue about most anything just for the fun of it and that he never, ever loses one of those arguments because he'll keep at it until his opponent falls over from exhaustion.  While they recovered, Hayden would quite literally be bouncing around them peppering them with questions and eating every last bite of food in the house.

Probably by Wednesday or Thursday I'd get a call asking me to send pills or take him back.  To which I would sweetly reply, "But have you tried switching his diet?  Perhaps you're giving him too much sugar?  Are you giving him consistent consequences and redirection?  Really?  Hmmmmm.  Because I'm worried that giving him pills might change his personality or turn him into a zombie.  I think you should just deal."

Then I'd hang up the phone and giggle.  By Saturday I'm sure a car would screech into my driveway and Hayden would emerge.  Before he could even get the door closed they'd be peeling out leaving him in a cloud of exhaust.

I'd welcome him home with gratitude because my goodness gracious I love that boy.  Because I love him, I'd start him back on his pills.  When they kicked in, I'd sit down with him and listen to him talk about his adventure.  With his self control back in place, Hayden would regale me with funny anecdotes and wry observations.  He would hug his dog and get her food and water without my having to ask.  Then he'd find his sisters and ask how they were doing because he loves them and he's not afraid to show it.  When Rich got home they two of them would discuss some boring show from the History channel and we'd be a happy and complete family again.

Tomorrow: How we have made treatment decisions.