As
television commercials remind us constantly nowadays, there’s a panoply of prescription drugs available to
combat depression, arthritis, high cholesterol, nicotine addiction, and
even “erectile dysfuncton.” You name the problem, and there are often several
drug advertisements competing with the pharmaceuticals you’re already taking or thinking about taking. Unfortunately, all these drugs have side
effects, ranging in severity from irritating symptoms like dry mouth,
dizziness, flu-like discomfort to more worrisome issues like weight gain,
headaches, diabetes, compromised immune system. As if this wasn’t enough,
sometimes side effects can be fatal: cancer, stroke, heart failure, coma, death. There are always caveats: “Don’t take if… and then a long list of
warnings. Most commercials end with:
“Check with your doctor.” Duh!
Sometimes
these ads are comical because the cure is fraught with such risk and peril that
most TV viewers may feel ahead of the game by choosing the ailment over the
treatment. Better the devil you know, than the newest meds which might kill
you. The assorted warnings that
accompany drug commercials are so funny they could even be part of my son Max’s
stand-up routine. Everyone in our family, except the dog, takes prescription
drugs. CVS loves us so much that when
business is slow, a pharmacist calls me to ask if I’d like a refill on a few of
the dozen or more prescription drugs that my family would need to reorder soon anyway.
Taking
prescription drugs is all about risk and reward, and often this balance changes
over time, especially if you have been on the same medicine for a long time. A
drug that is beneficial in the beginning may eventually become less effective
or even harmful if the side effects
gradually worsen over the years. For my daughter, Sarah, Abilify was a life-changing miracle at age
12. She’d been gaining weight for
several years on a small dose of Risperdal, which her special ed school
insisted she take to improve her volatile moods, meltdowns and other difficult behavior
typical of kids on the autistic spectrum. As she grew and the dosage became less effective,
I refused to increase the Risperdal, not wanting my beautiful,
passionate Sarah to turn into a fat zombie.
However, I also didn’t want her to get thrown out of another school;
further our family needed relief from her constant, stressful melt downs. Therefore I turned to Abilify as an off-label
experiment.
At
first, Sarah lost weight on Abilify, turning into a docile and sleepy robot. After experimenting with the dosage and time
of day, bed time turned out best for Sarah.
Her behavior improved dramatically— so much that she was able to attend
a special school for very high functioning kids who were mainly NOT on the
spectrum, starting in eighth grade. By
high school, Sarah had managed to make a few friends and slim down. But
starting with the summer of 10th grade, my daughter’s weight started
climbing again. Ever since then, Sarah and I have worked together diligently,
changing her diet and adding exercise, trying
in vain to stem the tide of her rising weight.
During Sarah’s freshman year of college, she
gained 16 pounds in her first MONTH see-sawing up and down in an attempt to
control what seemed an uncontrollable weight gain trend. This side effect was becoming intolerable, so
I tried taking her off Abilify the summer between her freshman and sophomore
years. Sadly, weaning her off the drug turned out to
be a big mistake. Sarah became an adult version of the hyper-stressed out hellion
she’d been at age eight. Once again Sarah
had seemingly endless screaming fits in stores and on Manhattan sidewalks. It
had been a long time since she got so upset I couldn’t talk her down, but
that’s what happened when she went off Abilify.
Everywhere we went, heads turned to observe the crazy young woman who
kept screaming at her frustrated and embarrassed mother, who wanted nothing
more than to disappear into a crack in the scorching summer sidewalk.
It was obvious that Sarah had to go back on
her 10 mg. dose of Abilify, and she has stayed on that dose for three years— until
last week. After watching Sarah blow up
from 120 to 158 pounds and then struggle to lose weight on an extremely
restrictive diet, her psycho-pharmacologist finally encouraged me to reduce the
dose. The pyscho-pharm said that Sarah might react differently at 22 than she did at 19. So far,
at half the dose, I’ve noticed that Sarah’s speech has become a bit more
scripted and perseverative, but at 22 she is also more self-aware and
reasonable than she was at 19.
“I have
to try not to go into the washing machine.” Sarah repeats the advice given to
her by a favorite teacher, as if it were her mantra.
It
occurs to me that maybe, just maybe, I can teach Sarah to be less repetitious
instead of just suppressing the symptom with a drug. As long as Sarah remains reasonable and
willing to listen, I can patiently suggest 9 different ways to change her
response and invite her to pick one.
“Will
Sarah get any worse?” I ask the doctor.
I have a short window for my Abilify reduction experiment because our
family is going on vacation the last two weeks of August, and then Sarah goes
back to school.
“It
will probably take another week before we know,” the doctor says. We both
decide it’s best if I leave Sarah on a half dose for the forseeable
future. I‘m keeping my fingers crossed,
hoping that this compromise will help Sarah lose weight without causing her
behavior to deteriorate so much that it drives us crazy to live with her.
Speaking
of driving us crazy, our son Max with his ADHD has come pretty close to that
point. After being on a variety of ADHD drugs
in high school—Ritalin, Metadate, Adderall, Strattera—he refused to take
medication in college. Since he was 18
and mostly living away from home, Henry and I went along with his decision as
long as he kept up his grades. While Max
was in college, I didn’t have to live with his propensity to create enough
debris for a landfill. If there were bugs or other creatures feasting on candy
wrappers and dirty dishes in his dorm room, I wasn’t there to see them. For the last four years, I had thought I'd retired from the job of dragging Max out of bed, nagging him to go to class or
do homework. If his wallet, keys or
cell phone were missing, I didn’t want to know about it.
Now
that Max is home, all of that has changed.
His room—although not quite as dirty and disorganized as it once was—has
“not improved enough to get a passing grade,” my husband Henry likes to
say. After reading “Attention Deficit Disorder: The Unfocused
Mind in Children and Adults, at the
suggestion of Max’s therapist, I have come to understand that Max’s ADHD makes it
nearly impossible for him to be organized and motivated when it comes essential but unpleasant tasks. These tasks
include: pounding the pavement, sending out many
(not a few) resumes, editing brilliant-but-rough work and, yes,
cleaning his room.
What’s
the best solution for Max and the rest of our family? Now we’re hoping that Vyvanse, the latest
ADHD medicine, is the silver bullet. In
the interests of familial harmony in addition to launching his career, Max
agreed to give Vyvanse a try. To his
credit, my son managed to fill the prescription (instead of losing it), and has
been taking his new meds for a few days.
Max claims it’s working, but naturally there are side effects. My son is not sleeping so well at night
anymore, so he needs to take a nap in the afternoon when Vyvanse,(which is a
time release amphetamine), wears off and he crashes. That means I have to wake him in time to walk
Sparky and meet Grandma for the early-bird special supper date they planned. Of course, Max couldn’t send out any resumes
during his two hour nap. However, I did persuade him to bring dirty dishes into
the kitchen and throw out an empty soda can wedged between his bed and the wall
before he pulled the covers over his head. I have to take my small victories
where I can.
Speaking
of small victories, the medication count is shifting in our household. One kid went
on meds that we’re hoping will help him; another is tapering down because of
side effects, and we’re hoping that will help her. Our NYC rental apartment is now a laboratory
where we’re conducting experiments designed to answer the question: Can state-of-the-art medications improve our
family life, or will the side effects make the cure worse than the disease? Stay tuned…
Labels: Abilify, ADHD, autism, drug side effects, familly isues, family issues, learning disabiities, parenting, prescription drug ads, prescription drugs, Risperdal, special education, Vyvanse, weight control