ADD Meds Info for Moms – Part I


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Titration Trials!
(Medication for YOUR child)

ADD Med’s Info for Moms Series: Part I
by Madelyn Griffith-Haynie, CTP, CMC, MCC, SCAC

The intent of this series is to provide Moms with information and context — to help you evaluate the risks and the benefits of medication for your children.

I want you to have access to the facts and figures and theories and underlying rationale to be able to come to a decision, rather than jumping one way or another in reaction to the fear-mongering, sound-biting and personal opinion pretending to be information for a while now.

BACKGROUND: (article starts below) The genesis of the information in this series was actually a reply to a thread on the ADDitude Magazine Website.

I’m reposting it here because their site stripped the paragraph formatting at post time, making it WAY too difficult to read.

Since I’m adding it here anyway, I expanded its focus, added new content, and “edited a bit” so that it would make sense to those of you who don’t ever click the link to ADDitude Magazine for context (there’s tons of OTHER great stuff over there for those of you who do).

This series is my response to a number of medication concerns and comments posted in a section supporting Moms of ADD kids. There were various medication concerns, each detailing symptoms and side-effects in their children, hoping to get some advice from the other Mom’s with ADD kids.

Read *ALL* ADD info with your Brain Engaged

Even though I am The ADD Poster Girl, known globally for my ADD expertise  —  working with ADD for a twenty-five years, and even though I:

  • Know, literally, hundreds and hundreds of ADDers, and 
  • Co-founded the ADD Coaching field, and
  • Developed and delivered the world’s first ADD-specific coach training curriculum, and
  • Have helped hundreds of ADDers turn their lives around

I am NOT a doctor or a scientist!! 

This article is NOT what is considered a “primary source.”
Neither is most of the ADD information you will run across on the internet, most of what you will find in books, or anything in the popular press.

That doesn’t mean the info you find there
is not valuable or accurate,
but it also doesn’t mean that it IS.  

I STRONGLY encourage you to click the link toward the bottom of the right column of this site to download and print the pdf of the International [all-Expert] ADHD Consensus Statement from the website of noted ADD expert Dr. Russell Barkley.

WHY?  In addition to the names, credentials and location of  75 ADD Expert Scientists and Doctors, it includes fourteen two-column pages of supporting references from credible sources.

If I had my way, every ADDer  on the planet would have a copy of the Consensus Statement and would pass it on to EVERYONE they knew, including their doctors, insisting that a copy be placed in their medical files!

You won’t find this information in your local paper — because it was web published in 2000 and Journal published in 2002 and, for reasons I will never understand, I have YET to see it featured even as prominently as a single local “Live at 11, Kids on Drugs!” filler story.  The consensus Statement is credible, easily available, includes references to primary sources, and you will be stunned when you read it.

—————————————————————————————————————————————-
NOTICE
: I have included links to Wikipedia for background on some of the medications. Even though I do NOT find their information *entirely* accurate, their “science” is essentially so, and it will be useful information for some of you. I take issue especially with their off-handed usage of “more” or “less” potential for abuse, etc.  I will share my view on this subject in a subsequent article I will link to this one once it has been posted.
—————————————————————————————————————————————-

See AlsoConsidering ADD Medication? Ten important things to ask your doctor
ABOUT Non-pharmaceutical alternatives
10 Questions to Ask to find a GRRRRreat! ADD Doc

Moms and ADD Meds

When it comes to medication concerns, there are a number of issues I see over and over and over as I browse the ADD sites all over the web.  Most of them “bottom line” to the same few things:  the scary feeling that parents aren’t getting accurate information from the popular press, and the scary thought that maybe their children’s doctors don’t really know exactly what’s going on either.

One ADDer’s Mom almost hit the nail on the head when she said that
it seemed as if it were, “Sometimes just plain trial and error.”

NOPE!!  It’s ALWAYS  just plain trial and error.

I know that sounds scary when it’s your child we’re talking about, but whenever you start to panic, try to remember that’s true about just about everything.  For example, is your child suddenly going to have an allergic reaction to [fill in the blank with food, medication, plant, pet, insect bite – whatever]?  Who can really say for sure? Trial and error.

That’s why God made Moms.  You’re the first-line defensive angels that make sure the members of the human race live to grow up!  THAT means you’re “hard-wired” to worry about your children, the first to notice anything that’s “off.”  Sometimes that’s great, sometimes needless worry – so the more info you can gather, the better.

Testing for ADD

We have tests for cognitive functioning, tests for hormone levels, tests for vitamin deficiencies, screens for toxins, brain scans, EEG tests, xrays, and a list as long as your arm of all sorts of physical and mental responses we can test for.  Some are lab tests, some you take with pen and paper, and some involve a computer or an expensive piece of medical equipment.

Your child’s doctor may order any number of tests, but he is NOT testing for ADD, because
THERE IS  NO TEST for ADD.
I’ll go into this in more detail later in this series, but for now, trust me on this one!
(or read ADD / ADHD Tests & Diagnosis on Helpguide.org)

Any professional who claims to be testing your child “for ADD” is either unschooled in ADD or has developed a bad habit of calling the perfectly legitimate tests given to rule out a few other things “ADD tests.” FIND OUT WHICH.

Ask what they are testing — before you authorize tests that may be unnecessary and will probably be expensive.  Good doctors test for valid reasons, will be able to explain those reasons to you, and will be happy to provide specifics; not-so-good doctors test because they don’t really understand how to diagnose and treat ADD, and will probably get defensive.  Pay attention.

If he or she wants to administer any of the questionaire-like tests, find out which one(s): have the doctor write down the name of each test and the name of the creator of each test.  How are you going to do web research if you don’t have specifics?

So, let’s get specific about why ADD meds are so tricky

ALL brains are different, and ADD brains are even more different!  

Since ADD medication works in the brain, there is no one “best” medication that will absolutely work with any particular symptom you can name.

There is also no way to absolutely avoid side effects (or a particular side effect.)  Siblings tend to respond to medication similarly, but even that’s not ALWAYS the case.

Statistics are a composite of “the average joe in the study.”

PRACTICALLY NO hand fits inside that glove without variances of some sort  for *any* diagnosis, set of symptoms, or medication side-effects.

AND not every “joe” got in the study.

“Referred” studies are filled with those with the most obvious symptoms (otherwise why would anyone refer them, right?)  So logic tells us right off the bat that the studies have to be biased toward gross motor hyperactivity.  Who “refers” that quiet little kid in the corner?  Nobody, usually. So the “dreamy/spacey” kids are under-represented.

MOST girls are under-represented, including those who merit an ADHD diagnosis, because hyperactivity  in girls and women frequently looks different from what most people think the term means. Even doctors.  Even doctors who work with ADD.

Doctors can only diagnose what they know.  They know what they’ve seen.
And they can only treat effectively once they’ve diagnosed accurately.

No doctor can be expected to know EVERYTHING, but you wanna’ make SURE that your chatty-Cathy (the one with the C- in “conduct” marring an otherwise straight-A report card) doesn’t slip through the cracks in their information base.

NO study is a crystal ball for your child’s response to a particular medication.

Unless YOUR child was in the study, the reported results and side effects might not even be CLOSE to what you will observe in your own child.

That might also be the case if your child WAS in the study, by the way.

My point is to make you aware that:

  • Your kids might experience s-m-o-o-t-h sailing with a medication that has a chat-list reputation for a TON of side-effects.
  • Or, it might be the case that everyone else in your support group considers a particular medication the answer to a mother’s prayer — the very same medication that turns your little dervish into a holy terror.

REALITY CHECK:  Even if a medication and a protocol works for every other child on the planet, it doesn’t mean it will absolutely work for YOURs.  “Mental health meds” aren’t like penicillin – there’s so much more involved.

Study statistics do give your prescriber a starting point, however — what is most likely to work best. Remember, they have to begin SOMEWHERE.

Statistically, the percentage of people who are “medication responders” increases when a second medication is tried.

Now, if we have this statistic at all, what does that say about how easy (or common) it is to hit it out of the ballpark with the first pitch?

See Can I Get My Medication Well Done? for another meds-trial analogy from a doctor who treats ADD (and related) disorders.

This does not mean that it *always* takes two tries to “get it right.”  Sometimes you get lucky. (Those are the ones you hear about — what I call the EUREKA! responders.)

  • Sometimes you get the right medication (for example, methylphenidate vs. dexedrin) but not the formulation — for example, Concerta vs. Ritalin (methylphenidate based), or Adderall vs Vyvanse (dexedrin-based).
  • Sometimes you need to titrate the dosage, sometimes the timing needs tweaking (which includes whether short acting or long acting meds work best for your child) — and this is just to find out if the FIRST medication is going to work.

So don’t start “doctor shopping” the minute that you hear that your friend Karen’s doctor turned her Wild Indians into little angels practically over night, thinking there must be something wrong with the doctor working with YOUR kids because your kids are having problems adjusting to their medication.

  • It’s ok to talk to your doctor about Karen’s kids, but don’t assume that Karen’s doctor is “better.”  Maybe so, maybe not.
  • If your friend had gone to your doctor and you to hers, the result might still have been exactly the same.  Don’t fall into the trap of blaming your doctor because the medication doesn’t work “out of the box” – they’re doctors, not magicians!

But How Long (oh, Lord) HOW LONG?

Depending on the composite picture of what’s going on in that ADD brain, it can take anywhere from one to three years to titrate perfectly (finding the best medication, the correct dosage, best timing and supporting diet for the best global response) — especially with kids. Because their little bodies and brains are changing rapidly, they’re moving targets.

That doesn’t mean you don’t get *any* help for that long, it just means it’s not optimal, and there might be “minor” side-effects like dry mouth or appetite suppression – which you CAN work with until you know if they are going to subside (which many do).

Unfortunately, some people have to try *more* than two different prescriptions to figure out what works best, and there ARE individuals (kids as well as adults) who are  unable to take medication because they are not “medication responders.”

There are also individuals for whom meds are contraindicated due to some other issue (for example, they’re not a good idea because of heart trouble or bipolar, for example, two you hear about most often).

While that’s not the majority response, your child is a majority of ONE.

Why do they always push those stimulants? Aren’t the newer drugs safer?

Statistically, psychostimulants work MUCH better for MANY more ADDers.  They are what we call “first line” medications for ADD.

Without going into a lot of detail until a later article in this series, stimulants best increase the bioavailability of dopamine and norepinephrine — the neurotransmitters that appear to be major players in the area of the brain with regulation responsibility for the executive functions, the area where the brains of ADDers “underfunction.”

That’s why stimulants are considered the first-line medications for ADD.

Used as prescribed, stimulants are among the safest drugs in the mental health pharmacology medicine chest. Despite what you’ve heard or read, stimulant medications

  • are not sedating
  • they are not addictive
  • they are not “just like cocaine”
  • they are not “gateway” drugs
  • they do not stunt growth, and
  • they’re not “given out like candy.”

They make headlines when they are abused, like many other medications.

Medical use and recreational use are two ENTIRELY different situations,
even though they are irresponsibly reported as if that were not the case.

In future posts in the series I will give you a little “political” background as to why ADD medication has gotten such a bad reputation, and I will explode some of the myths and rumors surrounding their use.

So what about Strattera?  Isn’t THAT safer?

As a field, we had high hopes that the non-stimulant atomoxetine would turn out to be the miracle medication we were all waiting for (Strattera is a brand).  Unfortunately, we were disappointed.  It is a godsend for those for whom it works, and if it works for your child, congratulations.  That still doesn’t make it the first line choice for other kids.  

—————————-—————-—————-—————-————————-—————-———–
Anecdotally (not study results — comments from ADDers themselves and loved ones of ADDers, in newsgroups, conferences, support group meetings, etc.), fewer ADDers report success with Strattera than with either of the stimulant medications, regardless of formulation – and there are more than a few side effects that many find tough to work around.

“Kathy,”* one of the students in my ADD Coach Training Program, reported that her formerly active child turned into Rip Van Winkle, for example — she fell asleep in the back seat of the car on the drive home from school, went straight upstairs to bed, wasn’t interested in coming down for dinner and didn’t want to get out of bed the next morning.   Kathy* pulled her daughter off the medication, following an extremely sluggish weekend.

*[name changed to protect her daughter’s privacy]

While Kathy’s daughter’s response is extreme, more than a few ADDers reported that they never felt “awake” on Strattera.

I became practically “narcoleptic” during my trial.  If I sat in a comfortable chair, I was OUT no matter how well rested, and regardless of the fact that I’d already had several such naps that day.  My brain felt like a slow stream of melting jello.  Thinking was focused relatively well, I believe, but everything was in slow motion. I felt stupid, in addition to not being able to DO much of anything.  My brain was no longer in overdrive, but it had slowed to a crawl.

[MY response – might not be yours or your child’s — REMEMBER: no two exactly alike!]
————————————

As to being SAFER than “those dangerous stims”
Since when is a brand new and relatively untested medication EVER “safer”
than one supported by HUNDREDS of long-term studies
in a meds class that has been used safely for almost a century?

Stay tuned — In the ADD Meds Info for Moms Series of articles, we’ll explore how and why the various ADD medications work, investigate some medication rumors and myths, discover some of the consequences of NOT medicating a child who needs it, and expand on various concepts included and implied by the points above.

As they become available, you will find related posts by clicking the following categories (on the lower, lighter gray menubar top-of-page) :

A. Hopefully Helpful — 2. ADD Treatment —  b. Medication
A. Hopefully Helpful —  2. ADD Treatment — c. Non-medical alternatives

—————–

As always, if you want notification of new content as it is posted, give your email address to the nice form at the top of the column to the right. [Stringent NO SPAM policy]

Related Articles Right Here on ADDandSoMuchMore.com

Some Related Articles from Dr. Charles Parker’s Corepsychblog.com
(much more on the site)

Related Articles around the ‘net

About Madelyn Griffith-Haynie, MCC, SCAC
Award-winning ADD Coach Training Field founder; ADD Coaching field co-founder; [life] Coaching pioneer -- Neurodiversity Advocate, Coach, Mentor & Poster Girl -- Multi-Certified -- 25 years working with EFD [Executive Functioning disorders] and struggles in hundreds of people from all walks of life. I developed and delivered the world's first ADD-specific coach training curriculum: multi-year, brain-based, and ICF Certification tracked. In addition to my expertise in ADD/EF Systems Development Coaching, I am known for training and mentoring globally well-informed ADD Coach LEADERS with the vision to innovate, many of the most visible, knowledgeable and successful ADD Coaches in the field today (several of whom now deliver highly visible ADD coach trainings themselves). For almost a decade, I personally sponsored and facilitated seven monthly, virtual and global, no-charge support and information groups The ADD Hours™ - including The ADD Expert Speakers Series, hosting well-known ADD Professionals who were generous with their information and expertise, joining me in my belief that "It takes a village to educate a world." I am committed to being a thorn in the side of ADD-ignorance in service of changing the way neurodiversity is thought about and treated - seeing "a world that works for everyone" in my lifetime. Get in touch when you're ready to have a life that works BECAUSE of who you are, building on strengths to step off that frustrating treadmill "when 'wanting to' just doesn't get it DONE!"

8 Responses to ADD Meds Info for Moms – Part I

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  7. Many excellent points here, not the least of which is the fact that all who suffer with ADHD show significant differences – both in ability to take meds and the specific metabolic burn rates of those meds. If those are not addressed right at the outset a person can take years to guess how the meds *should* work.
    cp

    Liked by 1 person

    • Absolutely!

      And, by the way, not all ADD docs address those particular issues OR understand how to tweak the game-plan using the information.

      Even with a doctor like CP, optimal functioning still might take further tweaking, so don’t panic if you still don’t have the Eureka! you desire. The important point in his post is that the more information the doctor gathers to inform his decisions (and the more background he brings to the table to let him know what to look out for), the greater your chances of having a positive outcome with medication. (In other words, “guessing” – or following a “basic” plan that doesn’t include your specifics – isn’t much of a treatment PLAN at all!)

      Dr. Parker has some excellent articles on his website that explain what a doctor needs to be aware of to titrate most effectively and quickly, along with more detail about concepts like “metabolic burn rate.” Check him out! (link to his “corepsych” site at the bottom of the article above)

      Like

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