Functional Neurological Disorders
Brought to you by Creative Healing for Youth in Pain's Parenting Blog
Functional neurological disorders, or FNDs, are an unusual manifestation of stress. They can take many physical forms – from what looks like grand mal seizures to blindness, and even what appear to be fainting or “drop” episodes.
What exactly are FNDs? I liken them to volcanoes that periodically erupt when the pressure builds up beneath the surface. Other examples are the “hot pots” in Yellowstone that periodically burst forth with steam when the pressure beneath the surface builds up. I view FNDs as the body’s way of “erupting” with physical symptoms when pressure beneath the surface overrides the body’s ability to compensate for or manage stress or anxiety. When there is more stress than the body can handle, we call this the “allostatic stress load.”
Adolescents are brought to our Whole Child LA pain clinic because their legs give out and they fall, or their legs or arms go into spasms. By the time they come to us, they’ve already seen multiple doctors, including neurologists, but despite trying a bunch of medications, the symptoms have persisted.
These unplanned, unexpected physical symptoms often cause teens to miss school, because they don’t want them to occur in front of their peers. Sometimes these students have been asked to homeschool because their school does not want the responsibility if the student has an FND while in class and incurs a secondary injury.
Up until I retired after my 30 years as head of pediatric pain and palliative care at UCLA, these teens were typically referred to psychiatry, where they were labeled as having “conversion disorder.” This label was confusing to doctors other than psychiatrists (and to the teens themselves and their families). Other medical staff and the families saw this condition as purposeful and evidence that the teen was “crazy,” even though that was not the intent of the psychiatric diagnosis.
The labeling of this condition gradually changed to “functional neurological disorder,” just as abdominal pain without an identified cause is called “functional abdominal pain.” Irritable bowel syndrome (IBS) is also a functional brain-gut neural dysregulation condition – the electrical neurological signals between the brain and intestines are not “functioning” correctly, causing a combination of abdominal pain, bloating, nausea, diarrhea, and constipation.
FNDs Rising Since COVID
Healthcare providers are seeing an uptick in these disorders due to the elevated stress created by COVID-19 restrictions. Exacerbating the problem is the political climate in some states where the government has regulated what kids are allowed to read and learn. Gender identity has also become a hot-button issue, creating even more stress for kids at school. It's been interesting to find out how universal this phenomenon is. I have been on vacation in Croatia (Dubrovnik), Puglia, Rome, and on a ship that stopped in Valencia and Lisbon, before heading to England and across the Atlantic to New York. In each of those regions and on the ship, when asked what I do, parents tell me about their teen or young adult son or daughter with “unknown” conditions, despite a myriad of doctors and tests. The conditions sound like FNDs. Parents said that many of these conditions started after the COVID pandemic, even though many of their offspring never got COVID!
How Are FNDs Treated?
The first thing to recognize is that FNDs rarely lead to physical injury, no matter how scary they look. Paying a lot of worried attention to them is not helpful. If the FNDs have led to sedentary behavior, physical therapy or some physical activity is critical. Development of routines, including good sleep hygiene, is also important. Sleep (at night, not during the day) is important for neurological healing and re-regulation. A critical component of treatment is psychological, such as cognitive behavioral therapy (CBT) or dialectic behavioral therapy (DBT). This treatment focuses on helping the brain (emotions, beliefs, motivation) get back into balance to manage the body’s stress load. (Remember, stress has increased for all adolescents since COVID.) Another important component of treatment includes social support, especially since so many of these teens have become increasingly isolated. The third leg of the stool is activating the creative parts of the brain involved in art, writing, music, dance, cooking, acting, and other creative arts.
Many of these resources can be found through CHYP (www.mychyp.org), for both teens and young adults, as well as for parents and caregivers. While CHYP does not provide individual therapy (medication, physical therapy, psychotherapy), it provides education (see our webinar on FNDs), social support for both youth and parents and a wonderful creative arts program for youth.