Welcome to my world where mental health doesn’t necessarily make sense. Or come without a price.
On a relatively calm Saturday morning years ago, one of my sons downed a nearly full bottle of Tylenol.
Earlier that morning I had retrieved the bottle from a locked cabinet, then left the kitchen for less than a minute. In that tiny window of opportunity, he acted totally on impulse.
Attention, not suicide, was my son’s intent.
Thankfully I noticed the empty bottle 30 minutes later while wiping the counter. Upon paging our pediatrician, she didn’t hesitate.
Get to the ER now. Drop everything. Go.
Excessive acetaminophen, the active ingredient in Tylenol, can damage the liver. Half a bottle could result in a liver transplant or even death, if not quickly addressed. I had
My sense of urgency sent my son into the fight or flight zone. By the time we arrived at the hospital three miles from our home, he entered a full-blown rage. Four security officers restrained him in a hospital bed.
Via a straw the nurse administered a large, black drink. The activated charcoal hopefully would rid the body of the poison by binding to the toxic acetaminophen. Looking at his discolored lips, teeth and tongue, I felt a scary situation grow even darker.
Six long hours passed – three blood draws and constant monitoring. Amazingly, his final round of blood work came back normal – with no damage to the liver.
Needless to say, a day in the ER isn’t free. Not the first or 25th time.
With both an intellectual and emotional disability from Fetal Alcohol Syndrome, my son struggles with poor judgment and intense anxiety. Developmental trauma, autism and bipolar disorder can have the same effect.
My son’s condition is chronic. Permanent.
His inability to interpret language can lead to frustration. His inability to reason and respond rationally can send him into paranoia. Oftentimes the trigger is something completely trivial. But in his disconnected, overwhelmed and fragile brain, he’s convinced that the whole world is out to get him.
That’s when he fights back to survive – which he’s done at home and school. Keeping him out of the hospital remains the goal, but that isn’t always possible.
Needless to say, a three or four-day stay in the hospital several times per year is incredibly expensive. Long-term residential treatment even more.
Although our pediatrician brought significant mental health knowledge to the table, she eventually referred us to one of the leading psychiatrists in the community. For the next two years, the overall care was good to excellent – not simply pushing meds but taking time to understand my son and our family. Then the large practice abruptly stopped accepting Medicaid – because of the low reimbursement rate.
Other families may have choices in health care. I, like many others, do not. It’s Medicaid or no health care at all.
With five expensive prescriptions to fill, my expedited search for an equally qualified doctor proved difficult. I had one Medicaid choice – second rate at best, as other parents warned me about her manner. And they were right. On the first visit, she belittled my son until he became angry – before criticizing me.
Needless to say, shame and blame don’t help anyone.
After four months I located another psychiatrist who initially seemed to be family-friendly. He suggested lithium – which initially worked wonderfully. But he didn’t regularly check blood work for negative side effects. When our new primary care doctor raised concerns about kidney damage after an annual check-up, I asked the psychiatrist about safety. He cut the conversation short every month – immediately shifting his focus to a waiting room full of patients, all on Medicaid.
Needless to say, each needed a psychiatrist who takes Medicaid.
Finally a nephrologist insisted on stopping my son’s lithium, since the psychiatrist wouldn’t return her messages. She refused to be responsible for further damaging his kidneys.
After I continued to question the psychiatrist about alternatives to the lithium, he sent me a certified letter – refusing to treat my son anymore.
Needless to say, I was taking more time than he could afford to give.
Back to the Medicaid drawing board with less than three weeks worth of medication.
To coordinate care and keep out of debt, the newest agency requires each patient to use its services. Unfortunately, the staff turnover is huge – frankly unacceptable. The best people leave for jobs that pay more, including two individuals who had worked successfully with my son. Meanwhile, vacant positions have meant an extended lapse in his services.
Needless to say, the low Medicaid reimbursement rate impacts the continuity of care.
Furthermore, the psychiatrist is impossible to reach during a crisis – because she works out of two different counties and carries an extremely full caseload.
Compounding this problem is Medicaid’s increasingly slow approval of new prescriptions or re-authorization of existing ones. Today we are still waiting for a new injecting medication to be approved, after another three-day hospitalization.
Living hour by hour. Praying for calm. Preparing for another rage, just in case.
Without question, Medicaid is not a perfect system. However, I am grateful for the coverage provided my son and others like him.
Recently, the U.S. House of Representatives passed a bill to cut $880 billion from Medicaid over 10 years. In addition, the legislation includes spending caps and block grants to individual states. Somehow politicians believe this approach will increase the efficiency of Medicaid – which is already 22 percent more efficient than private health insurance, according to the Kaiser Family Foundation.
Needless to say, thousands people – maybe millions – would be affected.
One fact must be made very clear. Five percent of Medicaid recipients account for 50 percent of expenditures. Similar to my troubled son, these individuals have severe, daily challenges that cost a bundle to treat – even when providing a basic level of care.
As the U.S. Senate considers its own health care options, I am hopeful that compassion and common sense will prevail for the most vulnerable members of society.
People’s well-being – perhaps even their lives – depends upon a holistic approach.
In the meantime, my son’s precious black cat will provide comfort. His brothers will be close at hand. Patient. Understanding. Empathetic.
Needless to say, so will I. DCP
Craig Peterson publishes EACH Child every Tuesday. To subscribe, open this link and “Like” the page. EACH Child is Special: Working Smarter Not Harder to Raise Every ONE
To learn more about Adopting Faith: A Father’s Unconditional Love, Craig’s soon-to-published memoir about raising six children with special needs, click here: Adopting Faith: A Father’s Unconditional Love
To follow my son Andrew’s inspiring story, “Like” his special Facebook page Andrew Peterson Goes for the Gold