Why Strattera?


The following post are my thoughts on medicating Sara for ADHD.  While I was assigned to this very compound for many years, I was in no way paid for this writing.  I USED to get paid to research Strattera (I never worked in Sales), but I haven’t been an employee of Eli Lilly for many years.  I own zero.zero Lilly stock.  In fact, I pay full sticker price for Sara’s meds, silently bemoaning the fact that if I were still working, she could take it for free.  Medicating children is a very sensitive topic; a topic so hair-raising, it has incited riots.  I’ve seen them from my office windows.  I was once chased around a medical meeting in Atlanta by Michael Moore’s team while he was filming “Sicko”.  Trust me…I understand better than most the ground I’m about to tread upon.

If you aren’t up for it, don’t click the “read more” button.  If you are interested in what years of research and working with the best and the brightest in Child Psychiatry has taught me, continue on.  A portion of my career was spent in the field, answering questions of University-based Researchers, so many of my opinions were shaped outside of the Pharma Industry.  I answered medical questions from Texas all the way to the Southeastern Seaboard, and 99% of the time in person. I learned more than I thought my addled brain could hold.  Little did I know God was preparing me for a specific assignment.  How was I to know the largest unanswered medical question of my career would be my own child?…

[Special Note: ADHD is just ADHD, simply put.  It is not ADD, or any other acronym.  Even though Sara has purely Inattentive ADHD and exhibits no hyperactivity features, she still has ADHD.  The correct diagnostic terms for ADHD are: (1) ADHD, Hyperactive, (2) ADHD, Inattentive, and (3) ADHD, Combined Type.  Most patients show a combination of hyperactive and inattentive symptoms, but some children are purely hyperactive (and wow, are those easy to spot), while others are purely inattentive (and should be referred for a learning disorders evaluation ). ]

Before having children, and having spent years working in Psychopharmacology, and many of those in Child & Adolescent Psychiatry, I would have anticipated if we had a child who needed any kind of Mental Health Medication, I would do it in a heart beat.  Boy oh boy…does wisdom come suddenly on this topic.  How long does an ADHD Researcher toss and turn over giving her child an ADHD medication after being diagnosed?  A month?  A few months?  Um…a YEAR?  Yes…a year.  That sounds about right.

I have not written lengthy posts about ADHD because what I know professionally can no longer be separated from my personal experience with Sara.  I am no longer an unbiased witness to the disease.  I’m fighting it in the trenches along with 11% of American Mothers.  I feel as if I’ve stretched my brain to its utmost capacity, squeezing out every last IQ point I might have, trying to get Sara’s treatment right.  This walk is long, it’s dark, and it’s scary as hell…even for someone who spent years working with the best Psychiatrists and Developmental Pediatricians on the planet.  Anyone who thinks of ADHD as “diagnosis-light” hasn’t parented a child with it.  Anyone who thinks it’s not real has never met a child with it, and quite honestly, I don’t have the time or the patience to deal with the Scientologists.  It’s OK to march about wearing ribbons, but whisper “Psychiatry” and those ribbons disappear.  If you have a sick child, you get casseroles.  If you have a mentally ill child, the silence is deafening. Oh to hell with my soapbox…moving on.

In an attempt to summarize years of study, I think it is prudent to try other measures before medicating for ADHD.  There is ADHD, and there are countless things that are ADHD-LIKE.  Kids with horrible sleep routines LOOK like they have ADHD.  Kids with too much refined sugar in their diet, or with artificial sweeteners in their diet, or with God KNOWS WHAT is in our food source in their diet…LOOK like they have ADHD.  Kids who are on chemo look like they have ADHD.  Kids going through drama at home or have inconsistent parenting LOOK like they have ADHD.  Kids with Learning Disorders  often look like they have ADHD (albeit some of them also have ADHD). It’s a good idea to make an honest attempt at ruling out other things first.  That being said, do I think special diets cure ADHD?  No.  I think if you cured your ADHD with food, you had a food problem, not a brain problem. ADHD kids can benefit from special diets, for certain, absolutely, no questions asked.  But there isn’t a food in the world that will make those neurotransmitters get back on-line if they are off-kilter.  If there were a food that potent, it would be called a drug, and it would be regulated by the FDA.

So after a year of Visual and Occupational Therapy, and a concurrent year of trying to discern if Sara had a Learning Disorder AND ADHD, or if Sara had just one or the other, we came to the decision that a round of medication was warranted.  I was, for obvious reasons, inclined to try the medication I know best, which is Strattera.  But, with that being said, I was also very aware of a small publication connecting Strattera to an improvement in kids with ADHD who also suffered from bedwetting.  Hmm, thought I.  I have a child who wets during the day (also known as daytime enuresis)…so is that an opposite problem or the same problem?

This line of thought took me on a long journey.  The same neurotransmitters our brains use to concentrate are the same neurotransmitters our spinal columns use when communicating with our bladders.  Interesting, yes?  So my theory goes…if Sara is using up all of her norepinephrine to concentrate, perhaps her brain is pulling it from her peripheral circulation, and therefore, she is leaking urine because the sphincter is receiving faulty messaging.  Or perhaps a more simple theory, maybe she has an immature nervous system just like bedwetters, and as her nervous system grows, she’ll simply outgrow it.  I contacted former colleagues to discuss the publication.  I contacted our Pediatrician.  I met with Sara’s Urologist.  All agreed that while I was probably right, there was no data to outright support my theory.  And they all agreed, in a child who meets the ADHD criteria, is on a bladder medication with problematic side effects, why not give an ADHD medication a try?

Driving home with the sample boxes on the seat next to me, I cried so hard I had to pull the car over.  Thank God my meltdown occurred in the parking lot of a Dunkin Donuts, where I think we can all agree, is the proper place to drown one’s sorrows.  It was a raw moment in which I was forced to come to terms with our reality, and it felt similar to being stabbed in the gut. When the doctor tells you your child has Strep Throat, you don’t think twice about medication.  Of course!  Unmedicated Strep can spread to hearts and kidneys.  WE KNOW THIS.  But unmedicated ADHD?  There are a ton of studies, not well disseminated to parents, that show long term, horrible outcomes for unmedicated ADHD patients.  While having above average IQs as a population, they have very poor college graduation rates.  Unmedicated impulsivity leads to arrests, unwanted pregnancies, unemployment, poorly developed relationships, and the list goes on and on.  The teenage driving data would scare the pants off you.  These outcomes have been very well researched and documented by Dr. Russell Barkley in the Milwaukee study, which has followed cohorts of ADHD patients for decades.  The data is out there, but no one is hitting parents over the head with it.  It’s challenging enough taking care of these kids day to day, watching them struggle with every aspect of their lives, let alone worrying that someday they’ll drop out of high school, total their cars, and become teenage Mothers.

Watching Sara work so hard to focus was enough to push me to open the boxes and do what I knew in my heart was the best next step.  We did a modified titration, taking almost a month to get to her optimum dosage. Sara takes her medicine at night, not in the morning.  Strattera has a stomachache as an early side effect in some patients, and it can make some patients drowsy.  It works for 18-24 hours, so taking it at bedtime usually won’t change its effectiveness, and the kids sleep through the stomache, which wears off in a couple of weeks.  As well, I wanted something that worked during homework time, but wouldn’t keep her up at night.  After several weeks on the drug, I tried switching her to morning.  I won’t do that again.  She looked like she’d been hit by a bus.  After switching her back to night, she never had another side effect.

I waited a full 8 weeks before trying to take Sara off the bladder medication.  Holy Moly, I don’t think I breathed that entire week.  As with all incontinent children, you don’t look for miracle cures.  You look for an increase in dry days.  As long as Sara wore her watch that reminds her to urinate, we saw no difference in her spastic bladder without the Ditropan (her bladder medication).  In no time whatsoever, she told me she never wanted to take Ditropan again.  And in the weeks that followed, we watched in amazement as her dry days increased and her leaking in general, decreased quite significantly.  Sara got so excited, she ditched her watch.  Um, well…bless her heart for trying.  The watch is back on, and she’s learning that she controls her bladder WITH her watch, not with her wishes.

In disease-specific terms, her ADHD has improved significantly.  We’ll do a 3rd measure this week and hope for the best.  I give the scales directly to her pediatrician without looking at them.  I’ve seen too many scales, assisted in the development of too many scale-specific questions, and will spend sleepless nights thinking about individual data points if I even glance at a scale. Her doctor read me the total scores, and she is below diagnostic criteria for ADHD while on Strattera (meaning, she has responded to the medication). At home, in Language Arts, and in her homeroom work (science, social studies, etc), her performance has finally found it’s upward trajectory.  Sara hasn’t missed a spelling word since starting Strattera, so her memory has definitely strengthened. She has stopped randomly filling in worksheets, and I’m seeing far less unfinished work coming home.  Within a month of starting it, Sara brought home a gigantic bag of “junk” from her locker and desk.  She said to me, “MOMMY!?  Did you KNOW how messy my locker and desk were?  Yuck!  I don’t need all this stuff at school.  Get rid of it.  I organized everything!”  At that moment, I checked her for birthmarks to make sure she was my child.  Since that time, she’s cleaned out her desk at home, organized her stationery box, rearranged her play kitchen, and insists on not only making her bed, but Kelly’s as well.  Her mood is so much less…funky.  She gets in funks, don’t get me wrong, but her day to day is far more even.  She is a child who can be reasoned with, which, in her 6 years on earth, is a true first.

Finally, one of the main reasons we went with Strattera is that I was fairly certain it would leave “Sara” intact.  It’s sometimes not favored because it takes a long time to work; because it’s hard to see any changes when they occur slowly, and there is a subtle nature to its effect.  I spoke of these issues professionally for many years, and it was surreal to watch it happen before my very eyes.  But the positive outcome is that wildly creative Sara is still with us.  She is in all ways…her.  She just doesn’t draw on the walls anymore.  She doesn’t put stickers on furniture. But she’s still inventing hilariously creative games, dancing about the house, and creating all forms of unusual art.  She is the best version of herself, without the blank expression side effect that can sometimes come with the other medications. In medical terms, it’s called a “flat affect”, and can best be described as looking and acting stunned.  In purely hyperactive kids who were literally bouncing off the walls, a flat affect is sometimes a small price to pay when the trade off is a child with great grades and newly found sense of self-esteem.  And to be fair, the “other medications” are highly effective and safe.  There are great options for the treatment of ADHD, which one can’t appreciate until they’ve dipped their toes into other psychiatric waters.  The trick is to find the medication most effective, with the most tolerable side effects, that allows the child to maintain a healthy sense of self. The sum of that equation won’t be the same medication for every child, can be dose dependent, is definitely weight-based, and will therefore change from year to year.  Fun stuff, huh?

The good news is that a majority of children outgrow ADHD.  Our brains continue massive growth through our teen years.  ADHD in some children is just an immature nervous system, and as their brain continues to make connections, those synaptic pathways develop naturally, and medicine becomes a distant memory.  The medication will not stand in the way of this growth curve.  Because brains don’t grow at the same rates, some will outgrow it sooner than others, and some brains won’t make the jump, which is when ADHD turns to something that will require lifelong management.  No one has a perfect brain, as my pediatrician likes to remind me.

These are my personal opinions and experience with ADHD.  They are not meant to be a reflection of any company or institution where I was employed or where my resources were deployed.  I would like to thank every colleague and medical professional who took the time to impart their priceless knowledge to me over the course of my career.  I am, as always, in your debt.  Godspeed to you, as I thank God and pray for your journey.  Your wisdom has made my journey possible.

And to my readers, as always, Godspeed to you as well.  Please feel free to share your thoughts with me in the comments section, where I will be happy to answer any questions. If you prefer a private email, please write me: blog@gregandlori.com.

 

 


11 responses to “Why Strattera?”

  1. Hi Lori,
    I know there are so many different opinions out there, but the bottom line is that you and Greg have to do what is best for your Sara. She is very lucky to have you both.

    Wishing you continued sucess one step at a time. Hugs to Sara and Kelly!

  2. Bravo. Bravo, bravo, bravo. We have to meet, Lori. I have to hug the woman who can write such a personal story and share it with the world. Your love for Sara has never been more obvious than in this story.

    A former teacher (who now works in pharma, mind you) I saw every single side of ADHD there was. And cringe when parents say their child “only” has ADD. You explained it well in layman’s terms why ADD just doesn’t exist. Bless you for helping parents everywhere with this often misunderstood diagnosis.

    (Still no bad man winter out there. I owe Sara and Kelly raincoats!)

  3. There our big huge God is again– showing how amazing He is! Who knew when we were living together in our mid- 20’s you were walking a road that would later help your own sweet girl! I have never been more proud- your honesty is a lesson we all can learn from. In a world of “everything is perfect” Facebook status updates- I find you refreshing! :). I love you!

  4. This is a wonderful, wonderful post. Our girls’ diagnoses are so different but in so many ways their journeys (and ours as mothers) are the same. I just wish we lived closer.

  5. God bless her little heart and God bless you. I have watched your journey for many years, and I know for certain, all of your paths were in preparation for Sara. She was meant to be yours. Give her a big hug for me Love Mom

  6. Great post! God joined the four of you as a family for a reason and all of your past experiences roll into your current ones. She has an incredible life ahead of her because she has incredible parents to lead her.

  7. Great Article! While our son isn’t on Strattera (we opted for different med), it was a long, painful decision in which we do not regret. We have seen incredible improvements. Thank you for sharing!

  8. This has to be the most well-written, understandable explanation of ADHD that I have ever read. Well done, and thank you for writing it for all of us to read.

    I am especially touched by your comment that you didn’t know that God was preparing you for this assignment –

    Take care –

  9. Reading this for the first time gave me a feeling beyond words. I’ve read it a few times because there is so much depth and meaning here. Everyone experiences the type of connectedness and life preparedness you describe, but not everyone is aware of it. You are a wonderfully in-tune and intuitive mother warrior.

  10. This post made me so happy, especially the part about Sara still being Sara. Thank you for writing about this so beautifully.

  11. What a journey, Lori! And If I am not mistaken, I am seeing signs of a rainbow. You all have come so far. What a gift that you chose to share it with the world. God knows how many people you have encouraged, lifted, educated, and inspired. And when the book comes out … well, then we will surely see a double rainbow!!! Love you!