ECT for kids

Seventeen-year-old Jonah Lutz is severely autistic. He's also prone to outbursts of violent behaviour, in which he sometimes hits himself repeatedly.

His mother, Amy, is convinced that if it wasn't for electroconvulsive therapy - ECT - he would now have to be permanently institutionalised for his own safety, and the safety of those around him…

"ECT has been transformative for Jonah's life and for our life," she says. "We went for a period of time - for years and years - where Jonah was raging, often multiple times a day, ferociously. The only reason he's able to be at home with us, is because of ECT."

It's estimated that one in 10 severely autistic children like Jonah violently attack themselves, often causing serious injuries ranging from broken noses to detached retinas. No-one really knows why. Some theories link self-injuring behaviour to anxiety caused by an overload of sensory signals, others to frustration as the autistic child struggles to communicate.

Amy and husband Andy tried countless traditional treatments using medication or behavioural therapy before finally turning to ECT - a treatment that first began to be used on children like Jonah a decade ago, in parts of the US. Each session alleviates his symptoms for up to 10 days at a time - but it's not a cure.

Jonah's doctor, Charles Kellner, ECT director at Mount Sinai Hospital in New York, is so convinced it's effective and safe that he allows Amy to witness the procedure and the BBC to film it.

Prof Kellner says the best way to overcome the negative image of ECT portrayed in popular culture is "to show people what modern ECT is really like, and show them the results with patients like Jonah". Jonah is one of a few hundred children in the US to receive the controversial treatment. He has had about 260 ECT sessions since the age of 11.

"There's a lot of interesting new neural imaging research showing that ECT actually reverses some of the brain problems in the major psychiatric illnesses," Kellner explains, as he makes final checks on the wiring around Jonah's temples.

"We don't know exactly why it works in people with autism and superimposed mood disorders, but we think it probably reregulates the circuits in the brain that are deregulated because of autism."

The modern treatment is carried out under general anaesthetic, with muscle relaxants to prevent violent convulsions. At the flick of a switch, Kellner administers just under an amp of electric current in a series of very short pulses.

Jonah's body begins to shake as the current induces a seizure - ECT specialists think this may "reset" the malfunctioning brain. The convulsions last for about 30 seconds.

Amy is unperturbed by what she sees.

"If a doctor says they need to cut open your child's chest to conduct life-saving surgery, you would allow it. That is more barbaric yet we accept it," she says.

Within an hour Jonah is fully alert. He and his mother head out of the hospital and on to the New York street to find an ice cream parlour…

Because the long-term effects of ECT on children exhibiting self-injuring behaviour are unknown, in some countries - and in a handful of US states - the treatment is not allowed. The UK's National Institute for Health and Care Excellence doesn't recommend ECT for use on under 18s.

But ECT is a well-established treatment in adults for severe, often life-threatening depression. Its use is controversial, though, with memory loss the main acknowledged side-effect. What's disputed is the scale of the memory loss. Studies carried out by ECT doctors suggest lapses are mostly short-term and that memory function soon returns to normal. But opponents of ECT cite surveys claiming to show that more than half of patients suffer serious long-term memory loss.

"It's a traumatic brain injury," says Dr Peter Breggin, a psychiatrist who has long fought the psychiatric establishment, and campaigns for a total ban on ECT. "The electricity not only travels through the frontal lobes - that's the seat of intelligence, and thoughtfulness and creativity and judgment - it also goes through the temporal lobes - the seat of memory. You are damaging the very expression of the personality, the character, the individuality, and even, if you believe in it, the expression of the soul."…

Sofija spent much of her early life suffering neglect and abuse in a Serbian orphanage, before Chad and Kaci adopted her in 2009. They were determined to give her a better life in America, but in 2016 they suffered the heartbreak of institutionalising her again - this time for her own safety.

"She beat herself so bad her nose was busted and bleeding, her lips were busted open and bleeding," Chad explains. "She gave herself a black eye. I was scared of my own daughter."

For six months Sofija received medication and therapy as an in-patient at the renowned Kennedy Krieger Institute in Baltimore, but there was little improvement. During her frequent violent episodes it often took three highly trained care staff - all wearing protective clothing and shielding Sofija with padded mats - to prevent her injuring herself or others.

After exhausting all other options, Sofija's doctors finally agreed to Chad and Kaci's request to give her ECT. Just a month later her behaviour had improved enough for her to return home.

We caught up with the family after six months and more than 30 treatments, and the transformation was remarkable. Sofija was swimming in the family pool and playing with her siblings, and while her violent episodes hadn't disappeared completely, her parents felt they were less intense and more manageable. Sofija was also receiving home schooling in maths and English. "She's sharp as a tack," says Kaci. "The only memory loss that Sofija has had from ECT is she forgets the procedure has actually happened."

ECT for severely self-injuring autistic children like Sofija is still in very limited use, and without a long-term scientific study it remains highly controversial. But even though Sofija is likely to need ECT every week for the foreseeable future, her parents have no regrets - they have their daughter back home…

"It's overwhelming if I think about it," says Kaci, "but what future did she have without it? My hope is she doesn't need it for the rest of her life but at this point I see it like a diabetic needing insulin. It keeps her alive. Literally it keeps her alive and it makes it possible for us to be able to have her in our home living life with our family and enjoying Sofija."

http://www.bbc.com/news/magazine-39961472

Courtesy of a colleague