17 Mar Family Lost
Image copyright: tomertu / 123RF Stock Photo
This is Chapter Three from my forthcoming book: ‘Stop! Battle Against Psychiatric Sales,‘ featuring a young person with ADHD and his family.
Often the most poignant insights come directly from the mouths of those who have been through it all and emerged at the other side, determined to help others avoid the pain they themselves have endured. Billy – who lives with ADHD – and his mother Sharon didn’t have to speak out. They could have kept their frustrations secret and become another disguised, faceless case study for the experts to toss about.
The bravery they demonstrate to frankly speak out about their tragic ordeal reminds us all that we are talking about real people, not characters from a play or movie set. It should also humble any professional involved in the care of families to reflect on their own practice and how they might ensure that lessons are learned. In this particular case, a catalogue of misjudgments by those whose job it is to care for the vulnerable has literally stolen precious time from Billy and his family. They won’t get that time back, but they hope that they can save families in similar situations the pain they suffered.
It all started so brightly. Billy, Sharon’s first child, was described by his kindergarten teacher (who now teaches Sharon’s youngest) as a popular, considerate child. Naturally, when her son moved up to first grade, she was expecting a similar report. But Sharon was to get the shock of her life, as she explains: “I went to a teacher conference; Billy’s first grade teacher had all negative things to say about him. I started crying; I was afraid. She said that the School Board could give me these forms to fill out to find out if he has ADHD (Attention Deficit Hyperactivity Disorder). I thought, ‘she’s an educator and I’m not.’ I told my friend, ‘he’s going to be delayed; I don’t want him to fail.’”
Any parent can sympathize with Sharon, can’t they? Don’t we all want our children to be at least as successful as the rest of their classmates? The thought that they might fall behind strikes at the heart of our deepest fears. We panic and, in reaching out to those with expert knowledge and experience, we place our fragile family in the care of others.
So here we have a frightened mother, desperate to do whatever she needed to ensure her child didn’t fall through the educational net. She was also carrying a lot of guilt over the possible effects of medical procedures, such as X-Rays, she had been given while unknowingly pregnant. Enter psychiatric ADHD drug sales with the expert-backed solution in a bottle. Adderall was the first drug Billy, at the mere age of six, would be given, a medication that is meant to be prescribed to treat ADHD as part of a total programme that includes psychological, educational and social components .
Yet Sharon says that Billy never saw a therapist, never saw a psychologist and never saw a social worker. What’s more, the paediatrician told Sharon that, while her son appeared to have attention deficit, he did not seem to be hyperactive.
ADHD drugs like Adderall are not to be taken – or prescribed – lightly; because they affect the overall chemical balance of the brain, any doctor prescribing these powerful ADHD drugs – especially to a child – needs to be absolutely convinced there is no other way. While Sharon was diligent enough to read the side effects, she nevertheless placed her trust in the judgment of her paediatrician. She believed that Billy would be OK.
Let’s stop for a minute, and have a look at some of those possible side-effects of ADHD meds: seizure; changes in blood pressure; irregular heart rate; shortness of breath; problems with urination; confusion; extreme sedation, excitation or mania; increased skin sensitivity to sunlight; constipation; yellow skin or eyes; lip puckering; lip smacking; uncontrolled movements of the tongue; uncontrolled movements of the hands, arms or legs; difficulty walking; rigid or stiff muscles; fever; dizziness; dry mouth; changes in appetite; weight gain; tremor of the hands; persistent sore throat…
Can I remind you – Billy was six years old.
He remembers going to the bathroom a lot and losing his appetite so much that he barely ate. A couple of weeks into his ADHD ‘treatment’, Sharon recalls coming home from a nightshift one morning to find a note waiting for her:
“He had never before written me a note longer than, ‘I love you mom’,” she told me. “But this was two paragraphs of, ‘I love you so much mom; sorry sometimes if I mess up.’ He hadn’t been to bed all night. Then, after the ADHD meds wore off, it was crash. I don’t think he went to school the next day; he was so tired he couldn’t get up.”
While most children of his age would have been enjoying the fullness of life, Billy’s days descended into a living Hell:
“I wasn’t doing anything. I wouldn’t even talk to anyone at school,” said Billy. “I would just do work, go home, use the restroom because I had diarrhoea and go to bed.”
Then things began to reach crisis point, as Sharon recounts:
“We were fighting one day about taking the meds and eating, and he said, ‘I don’t feel like eating; I’m not going to eat. I just want to kill myself; I just want to die’.
As you can imagine, this was a wake-up call and prompted Sharon to call the paediatrician and announce she would refuse to give Billy the ADHD drugs anymore. This was enough to end his association with Adderall, but sadly the drugs companies’ involvement in his management had only just begun. When I asked whether her son’s anguish had made her afraid, Sharon’s guilt-ridden response was heartbreaking to hear: “Not afraid enough, I guess, because they prescribed him another drug that I let him take.”
Did this development stimulate a concerted effort by those involved in Billy’s care to monitor him more closely, perhaps to finally offer him the psychological and social components of the programme that the ADHD drugs were supposed to only be a part of?
“I don’t even think we saw the doctor,” said Sharon. “I think he prescribed the new medication over the phone – Concerta®. Billy took that for a couple of months but it had the same kind of effect.”
“It was just the same,” explained Billy. “I was talking to people but I still got bad stomach aches and I wouldn’t want to eat.”
Worried about his nutritional intake, Sharon thought she might have found the answer when another mom recommended an ADHD drug that could be applied to the skin; the Daytrona patch. Would Billy’s nightmare finally come to an end?
“It was even worse,” said Billy. “I started not talking to people again, not even to my parents or sister. I would just do the same thing over and over again; I had really bad upset stomachs, even worse than the first time; I was really depressed; I really felt like killing myself.”
The strain on the family became ever more intense, as Billy’s parents argued over the ADHD patch.
“We fought about that for about a year,” explained Sharon. “We tried to not give him as much dosage.”
Billy sought his father’s help in ending his torment. “I begged him to tell mom to take it off me because I didn’t feel right,” Billy explains, his voice close to tears. “It wasn’t mum’s fault, I know. She didn’t know.”
Billy, then nine years old, had finally reached the end of the line. In his own words he knew that he couldn’t live another day under the control of his ADHD medication. Mercifully, he didn’t have to. The next conversation between Billy’s parents ended his ordeal, as Sharon agreed with Billy’s father that there would be no more Daytrona patch. After more than two years of ADHD drug-induced separation, the real Billy was on his way back to his family. Love had reunited a family that Sharon admits had ‘lost its way for a little while.’
So can we work out what had gone wrong in the first place?
Billy’s story reminded me about the critical psychiatry classes I attended in my training. We were asked who in the room had ever had ADD. We all put up our hands, and we all said, “Right now, because this is boring.”
Billy is a smart young man and the more I dwell upon the disparity between his performance at school and his obvious intelligence now, the more I suspect that he was simply bored. Perhaps he also struggled with symbolic representation (i.e. reading letters). I will never know for sure, but after taking him off the ADHD patches, Sharon got Billy a tutor. Guess what?! He is excelling in his reading and has no problem with writing.
Doesn’t it seem to you that this is what Billy needed all along? What he got was rejection from his class teacher and over two years of psychiatric ADHD drugs from his pediatrician which distanced himself further from his peers and came close to destroying his family.
When a boy of nine years old tells his family he will kill himself if he isn’t taken off the ADHD drugs, it’s time to wake up; something is going very wrong. Shockingly, Billy was given drugs but neither he nor his family were offered any type of psychological or social support. He wasn’t carefully monitored. His medication wasn’t even reviewed.
In fact, when Billy was nearly fifteen years old, getting a physical examination for school, his pediatrician asked him whether he was still on the patch!
What more can I say?
If any good has come out of this sorry situation, it is that Billy and his parents have learned from their ordeal and are in a position to advise others in a similar situation.
“Research!” Sharon says. “Don’t just take the opinion of your doctors; there are second opinions. Listen to your kid!”
Billy understands that his mom was just doing what she thought was in his best interests. But still he looks back at the fights and it makes him want to cry.
I told Billy that I hope in time he won’t hold himself responsible for his behaviour over those few awful years because it wasn’t him – it was the drugs. Billy is aware that he is lucky in that he has a supportive family who love him, but he worries about those kids who don’t have that bedrock.
So do I.