Meds

Jolanta Davis
Jolanta.davis@gmail.com

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        I clear my throat before speaking, hoping my voice will sound composed and even, “I’d like to fill this prescription, please.”
        “May I see your driver’s license?” the pharmacist asks.
        “Sure.” I fumble for my ID. What I’m buying is a strictly regulated, controlled substance. One prescription per month. No refills allowed.
         “Will you wait for it or pick it up later?”
        “I’ll wait.”
        “That will be ten to fifteen minutes,” he says matter-of-factly.
        It’s just a job for him, and I’m just another face, attached to another piece of paper for a specific dose of chemicals he needs to account for. He has no idea what I’m feeling right now or what that gray piece of paper with a watermark means to me and my family.

        Sitting in a narrow, uncomfortable chair across from the “Pick Up” counter - its obligatory display of tabloid magazines announcing marriages, divorces, and pregnancies of celebrities - I feel like a failure and a traitor: a failure as a mother and a traitor to my own child.
        And I wonder where I have gone wrong.
        Intellectually, I know that it’s a neurological disorder, it’s just biology gone haywire, but I can’t help wondering if my son would still have been diagnosed with ADHD had I been a different, better mother.
        Should I have been stricter with him? More organized and structured? Should I have pushed him more? Where and how did I fail?

* * *

        Andrew* was only in kindergarten when a doctor first recommended meds. “Imagine a gate between his brain and the outside world,” said a developmental pediatrician who evaluated him. “Right now the gate is rusty; it doesn’t open fully. Medication will help loosen up the hinges and the gate will move more easily. It will remove that barrier between him and the outside world.”
        I chafed at the suggestion, but that reaction didn’t stop the doctor from including in her evaluation a comment that “the parents are encouraged to seek a consultation to discuss the feasibility of using medication.” Ever since then, at every IEP team meeting at school, the meetings during which my son’s teachers and therapists would give us updates on how he is doing, one therapist kept bringing up the recommendation, as if meds were the solution to all of his problems, even his planning and social difficulties.
        I’d get angry every time I heard her quote that evaluation, but instead of growling “Shut up, you stupid bitch!” I’d clench my teeth and choose a reply from my repertoire of much politer responses:
        “We believe he’s too young for medication.”
        “We’d like to explore all other options and interventions first.”
        “We are still thinking about that.”

        In my quest to avoid medication, I had tried a variety of “alternative treatments” hoping that they might work. I had read somewhere that zinc supplements could help, but I stopped giving them to my son after a week, because he became very calm, too calm, and started complaining that he was tired. That was very unlike him, and it scared me. I had also tried fish oil, with its omega-3 and DHLs, because I had heard some parents swear by it, but I didn’t really notice much difference in Andrew’s behavior when he took it. The one thing I did learn was to avoid artificial food coloring. The FDA can say what it wants, but I know what I see. Both of my kids bounce off the walls after a handful of dyed candy, an artificially colored popsicle, or frosting on a cake. It’s uncanny.

        Overall, though, none of those things really made a whole lot of difference, so near the end of second grade, which was a really awful year for our boy, I finally gave in — I got a prescription for ADHD meds in a patch. The problem was, my son didn’t want to use it. The only thing I could get out of him was that he was afraid the meds would change him, but he wouldn’t say what made him think that.
        When I related my son’s refusal to use the patch at the annual IEP meeting at the end of the year, his teacher asked deridingly, “It’s his decision?”
        It was the first time I actually cried during an IEP meeting. In front of nine people.
        “What do you expect me to do?!” I wanted to yell. “Stitch it to his leg?! Are you going to come to my house when he’s fifteen and refuses to take his meds anymore and help me make him take them? It has to be his decision!”
        But instead, I just sobbed into my tissue.

        When my son refused the transdermal meds, I wondered if  he’d noticed that one of his classmates used to wear a patch just like that. It was the same classmate who later started taking short-lasting oral meds and was visited by the school nurse every day at lunchtime to take his afternoon dose. Naturally, my son had to ask what his friend’s medicine was for.
        “It’s not your business,” the nurse answered.
        Later, the classmate told my son he was taking the pills to “behave better.”
        “But he doesn’t behave any better, Mom!” Andrew exclaimed when we talked about it one evening. “Those pills don’t work!”
        Clearly, the medicine alone did nothing to improve his classmate’s social skills, which was not that surprising. I knew some studies suggested that the best results in managing ADHD are achieved when medication is combined with behavioral therapy, but obviously the school didn’t think that boy needed therapy, or more likely, found the services to be too expensive.

        That’s why I had resisted giving in and getting the prescription for so long – I knew that it’s not a wonder pill, and I worried about the side effects: the mood swings when the meds wear off at the end of the day, the insomnia, the possibility of depression.
         I’d heard of the side effects first-hand from talking to other parents whose kids were already on meds.
        “He gets very emotional at the end of the day and cries easily,” one parent said. “So we always let him have some time alone in his room.”
        “It’s hard for him to fall asleep,” said another, “so we take him outside to do some running. If he’s tired, he’ll fall asleep more easily.”
        Yet another boy was simply given a dose of different meds to help him fall sleep.

        When my son refused to use the patch, my husband and I decided to hold off for a while and see how things would go in third grade, with the new teacher. In the meantime, I continued to read books, articles, and online discussion boards.
One book I had read, published by an academic press and written by three academics, was predictably not taking sides either for or against medication. But still, I found the history of how methylphenidates came to be prescribed to children quite fascinating, if not disturbing, especially once I learned that if the diagnosis was made based on teacher observation alone, the rates of ADHD soared.
        A different book, written by a journalist, made me wince half the time I was reading it. I didn’t want to believe that the stigma attached to having a child with mental illness was so strong and so prevalent in the society. I would prefer not to have known that supposedly one in four parents would not want their children to be friends with a kid who has ADHD. I wondered if that was the reason why a parent of a classmate always said they are “booked full” on the weekends, even when  her son, not mine, was asking for playdates.
        When I found an article about a study suggesting that children who were on meds were less likely to abuse drugs in the future, I wondered just how valid the study had been. I knew two families in which children who took ADHD medication did just the opposite as teenagers. One of them ended up in prison for a few months. Another has been to rehab a couple of times already. I was hoping fervently that would not happen to my son.
        After I read about a study that followed kids with ADHD over several years, I wondered again what difference meds really make if apparently after five years the health, educational, and social outcomes were the same for all groups of kids – those who used meds and those who didn’t.
        I felt overwhelmed by all the conflicting information I was getting. When another developmental pediatrician who suggested meds recommended a book about medications, I decided not read it because several online reviews questioned the author’s objectivity. Apparently, he had received a lot of grants from the pharmaceutical industry.
        People on ADHD discussion boards turned to be the most useful source of information by far. I met there parents who have been down that road for a while, and who could offer plenty of useful, first-hand advice. Reading posts of adults with ADHD has been even more interesting. I will never forget one poster who said he nearly cried with joy the day he finally took meds, because it was the first day in his life when he could think clearly.
        But still, I couldn’t decide.

        Then, about half-way through my son’s third grade year, his teacher, a truly wonderful and experienced woman, brought up the meds again, “I know I promised you at the beginning of the year I’ll offer my advice only if I really think it’s necessary. And I have to tell you, your son is a really wonderful and smart boy, and it’s a joy to have him in class, but he just checks out too often. He can’t focus, and that’s holding him back.”
         So I talked to the doctor again and got another prescription, though not for a patch. The doctor suggested trying oral meds in a capsule that could be opened and sprinkled onto yogurt or a spoonful of ice cream. And that’s what I got.

* * *

        Once the medicine is ready, I head to the car with my white paper bag. I sit behind the steering wheel, but do not start the engine right away. Instead, I hang my head down and feel my eyelashes and eyelids getting wet. I shut my eyes as tight as I can, and squeeze the tears out onto my eyelids. I’m glad I’m not wearing any makeup.
        Calm down, you have to calm down.
        I try to stop thinking and just focus on my breath, the way I was taught to do in the Mindfulness-Based Stress Reduction study at a local teaching hospital a few months before. I was pretty sure that when I walked in, the psychologist evaluating candidates had her doubts whether I would qualify. But she must have changed her mind, when I burst into tears once I started talking about my son and about my worries about him.
        Back at home, I check my eyes in the rearview mirror. They are red, but I hope my husband and the kids won’t notice, because I’m wearing glasses today.
        “Hi everybody! Mama’s back!” I greet the family as I walk into the kitchen, holding the white bag. I force a smile on my face and cheer into my voice.
        My husband looks at the bag, “What’s that?”
        “His meds,” I answer quietly.
        I don’t look at his face to see his expression. If he’s happy, I don’t want to see it. He’s been suggesting for a while that our son needs meds. And I have always been wondering whether it’s because he’s an American and I’m not. I know he has grown up on ads that suggest there’s a pill for everything, while I was forced to do herbal inhalation therapy for my colds. Has he been saying it because he wants to “control” our son’s behavior? Or… has he seen the truth much earlier than I have, and realized much sooner that our son really does need meds to function?

        That evening, looking at the prescription information, I cringe reading about the side effects. “Misuse or abuse of dexmethylphenidate may result in serious (possibly fatal) heart and blood pressure problems,” “may be habit forming,” “trouble sleeping, dizziness, dry mouth, heartburn, nausea, stomach pain, headache, nervousness, loss of appetite, or weight loss may occur.” I freak out reading about “unlikely but serious side effects,” which apparently may include hallucinations and abnormal behavior or thoughts.
        And I start crying again.
        It’s not the first time I fight tears thinking about my kids, and I know it’s not going to be the last. I also know that if I go to bed now, I’ll just lie there, awake, worrying. So I stay up, as late as I possibly can. I surf the Net, read the discussion boards, and write for my anonymous blog that I hope my son will never come across. I read one of my entries, from about four years before: “There are times when I’m afraid he will end up heavily medicated or worse, institutionalized, and every now and then, especially after a long weekend full of him being wild and unresponsive, the medication route looks very enticing.”
        I realize I have finally given in and gone down the medication route. It feels horrible.

        Over the following month I do my best to remember the new morning routine of sprinkling the meds on a spoonful of ice cream and giving it to my son along with his beloved grilled-cheese sandwich. There are at least several dozen tiny, white globules in the capsule, and the medication is "XR," meaning "extended release" – it should work for about 8 hours, then it’s flushed out of the body. Whenever a few of the tiny grains of medicine roll off the spoon, I wonder how many minutes of attention that will cost him. And if I forget to give my son his meds in the morning, which happens a few times, I am sure to get a note from his teacher, asking, “Andrew had a hard time in school today. Is there something going on we should be aware of?”

        A few weeks after we start the meds, I admit to a few mothers I know, whose kids also have ADHD, that my son is on meds too. They simply nod their heads and ask, “How is that working out for you?” Then, very matter-of-factly, add another question, “If you don’t mind, what is he on?” When I tell them the brand name and the dose, one of them raises her eyebrows. “That’s a low dose… Teddy* started on five milligrams too, but that was in kindergarten. He’s on fifteen now.”
        Talking about the meds is not taboo in this group. Neither is talking about our kids’ weird behaviors. Once, when I complained, frustrated, “I can’t stand it when he licks the headrest in front of him when we’re in the car,” another mom, without batting an eye, replied, “Mine likes to lick the windows. I think it’s something sensory.” Conversations like these are as common as discussions of introducing solid foods among mothers of six- to eight-month-olds.
        The one taboo in our conversations are our feelings, our worst fears, and our worries. None of us has ever said, “I just lost it yesterday and cried for two hours.” Instead, we say, “I’ve been having a hard time with the kids / the school / the health insurance company,” and the other moms understand what it means and simply respond with, “I’m sorry to hear that,” without getting into details.
        We each know we all cry at night sometimes, but we never talk about it.

        Several months later, during our monthly visit to the mental health clinic to pick up the next prescription, I repeat what my son’s fourth grade teacher had told me. The meds help him a lot, but they seem to wear off around one in the afternoon.
The nurse asks “Do you think he needs a higher dose?”
        “No!” I respond a bit too rapidly, nearly shouting. “No, I think he’s doing fine,” I add more quietly after catching myself. “The school ends at two-thirty. That’s okay.”
        The nurse nods her head, “Most parents say the same thing in the beginning,” and I wonder whether the unspoken end to that sentence is, “but they change their minds after a while.”
        After about half a year, I do agree to up the dose to 10mg, because over that time Andrew has grown to be my height and added nearly a dozen pounds or so to his weight. The five milligram dose just wears off too fast.

        A year passes. Andrew is doing all right in school, though attention and class participation are still a problem sometimes. But since he is a really bright kid and routinely scores well on tests, whether he pays attention in class or not, his fifth-grade teachers complain only when he forgets to turn in his homework. The day after we come back from the spring break vacation, as I make his breakfast and lunch, he reminds me, “Don’t forget my medicine.”
        I’m startled he remembers that after a whole week of being off meds. “You really think it helps you pay attention in school?” I ask, kind of hoping he’d say, “No” or at least be unsure of the answer.
        “Yes,” he replies. “It helps me focus.”

        Half a year later, however, a few months into sixth grade, Andrew says the meds stopped working. It could be that his maturing body, after growing three more inches and gaining fifteen pounds, simply needs a higher dose. Taller than I am, he's the height of a grown man. We talk about going back to the doctor, to get a new prescription, but he decides not to. I don't push.

        Ultimately, it still is his decision.

 

About the Author

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    Jolanta Davis is a full-time mother of two, a part-time assistant at a nearby university, and an occasional writer. Her work has appeared in print in Skipping Stones and online in All Things Girl. She wrote "Meds" after reading Brian T. Maurer's "Reining in the Rx" published in July 2012, because she wanted to offer the readers an additional perspective on the controversial topic of prescribing medication to children. Of note, character names(*) within the piece have been changed. Her website is http://www.jolantadavis.com/.

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    Published: February 3, 2014