COVID-19’s daunting challenges for families with Lyme and PANS/PANDAS
by Sandra Berenbaum, LCSW, BCD
While the world deals with COVID-19—how to be safe, how to protect our citizens and essential medical workers, and the politics of it all—my thoughts go to the kids with tick-borne illness, PANS/PANDAS, neurotoxicity from mold, and other related conditions.
Families with these conditions face daunting challenges. Although I’ve watched a lot of news, I haven’t seen this fact addressed at all.
For me, the first issue is everybody’s personal safety. I don’t want to get or transmit the illness and neither do my family members and my clients.
In my psychotherapy practice, I struggled with whether to cancel in-person meetings with parents and children. I can work with parents on the phone, but I need to see body language to work effectively with kids.
Then I got a message from “Sara,” a mom who was scheduled to come to me for an intake session. I had planned to see her 10-year-old son by the second or third session, together with the mom.
Sara texted me to cancel our initial session. Like many children with PANS/PANDAS, her son is highly susceptible to any kind of infection.
PANS is an acronym for Pediatric Acute-Onset Neuropsychiatric Syndrome. PANDAS stands for Pediatric Autoimmune Disorders Associated with Strep. In both cases, infections cause inflammation in the brain, resulting in behavioral changes. Often, obsessive compulsive disorder—OCD— is part of the picture, as are motor tics.
Sara gave me permission to quote her text: “One of my son’s OCD [symptoms] is licking his fingers and rubbing his eyes. So it’s time to keep him home even if there’s nothing more I can do to protect him.”
How can a parent stop her child from licking his fingers and touching his eyes, when these symptoms–due to a medical condition–are beyond his control?
Virtually every one of my client families is dealing with tick-borne illness, often with accompanying PANS/PANDAS. Sara’s text brought that situation into sharp focus for me. Families like hers are even more vulnerable to infection than the general population. These kids and their parents need special support and attention.
Before COVID-19, parents of kids with chronic tick-borne illness and other serious, chronic illnesses, had many serious concerns:
- BUILDING A TEAM – Finding the right practitioners, such as a Lyme / PANS doctor, a primary care physician with a basic understanding and respect for what the child and family are going through, perhaps a Lyme-literate neuropsychologist, neuro-optometrist, Naturopathic doctor, physical or occupational therapist, psychotherapist and/or family therapist.
- MANAGING THE ILLNESS – Making sure their child complies with doctor’s orders – getting lab tests, taking medications and supplements, and following dietary recommendations.
- DEALING WITH THEIR CHILD’S EDUCATION – developing their child’s education plan, working with the school on what supports might be needed, or sometimes finding a different way of educating the child, if regular schooling doesn’t work for the student.
- FEAR OVER BEING REPORTED TO CHILD PROTECTIVE AGENCY – Concerns that neighbors, the school, primary care docs, or even family members might report the parents when the person reporting doesn’t agree with the parent’s plans for medical treatment or school attendance
- DEALING WITH DIFFICULT SYMPTOMS THE CHILD MIGHT EXHIBIT – OCD symptoms, rages, distractibility, inability to sleep, night terrors, finicky eating, and/or pain. (One parent told me that her daughter had episodes of doubling over with abdominal pain for hours. When this happened, all the mother could do was hold her.)
Now add COVID-19 to the mix
None of the previous challenges go away and many new ones develop.
- THE NEED TO CANCEL MEDICAL AND OTHER APPOINTMENTS – Even with a team in place, in this time of physical distancing, many appointments will be cancelled. Some appointments can be done via video, but that doesn’t work for a massage, physical therapy, or a chiropractic adjustment.
- WORRIES ABOUT WHETHER THEIR CHILDREN WILL GET COVID-19 – will this novel coronavirus make their children worse? If their child’s illness already impacts their breathing or gut, for example, how much worse will they get with COVID-19? One Mom said that she always knew when her child was flaring. Her daughter was an athlete, a runner, despite her asthma. When her symptoms got worse, to the point where she needed a nebulizer or a trip to the emergency room, the mother knew the girl’s tick-borne illness was flaring. How many children around the country have serious asthma? How would these children get past COVID-19, if severe respiratory symptoms from the virus were added to the breathing problems that asthma produces?
- CONCERNS ABOUT HOW TO EDUCATE THEIR CHILDREN – Schools are out around the country, some for months. Many are giving instructions over Zoom, Google classroom, and other platforms. Others simply send home packets for their kids to work with, learning new schoolwork without any interaction with the teacher. This places an enormous burden on parents. Teachers may be in a bind over distance learning. Wealthy school districts can afford to send home computers or iPads for students to use. But poorer school districts can’t. It would be unfair to use video platforms when many students don’t have the appropriate devices, putting students who cannot afford them at a severe disadvantage. Therefore, some school districts are simply sending packets home without using video platforms to teach lessons.
- KEEPING THEIR CHILDREN AWAY FROM PUBLIC PLACES – It’s hard to keep kids at home, away from others, at all times. Depending on where you live—and your child’s health—you may be able to occasionally walk in nature (protecting yourselves from ticks, of course!) or possibly take a family bike ride. However, it’s not advisable to visit other people’s homes nor to have anybody else visit your home. Many communities also have shut down public playgrounds and other recreational facilities, to reduce the possibility of spreading the virus.This poses serious challenges for all families, but especially those dealing with Lyme, PANS/PANDAS and similar conditions. It requires parents to find creative ways to allow their kids to let off steam as well as occupy their time in satisfying ways.
- KEEPING KIDS AWAY FROM EXTENDED FAMILY –In this time of coronavirus, it’s not safe to bring kids to grandparents and other relatives. Again, this places an enormous burden on parents, who may be losing access to valuable support. One grandma offered to have her granddaughter visit, to bake cookies. A good idea in normal times, but not now. The mother would have loved to say yes! She has a large family and having her 5-year-old daughter visit grandma for a few hours would lighten the mom’s load immensely. However, it’s not to be. Grandma is in her 70s and the risk of bringing the child into her home is simply too great.
Unfortunately, our struggles with COVID-19 have just begun. Most of the science about the spread of the disease, as well as treatment options, are not yet known. Patience is difficult in these unprecedented times.
Physical isolation does not have to mean social isolation, however. It can be helpful for families to keep up contacts with relatives and friends through phone calls, email, and video chatting (such as Zoom, Facetime, Google Hangout, and Whats App).
My family used Zoom to play a word game that did not require a board. There were 11 of us, from age 86 to age 11, in four locations playing the game Blank Slate. We had some great laughs and discussions as we spent around 90 minutes playing the game.
This is a difficult time for everybody. We all need our family, friends and communities more than ever. Let us try to stay strong, and at the same time, share our strength with one another.
Sandra K. Berenbaum, LCSW, is co-author of “When Your Child Has Lyme Disease: A Parent’s Survival Guide.” Her psychotherapy practice focuses almost exclusively on Lyme disease patients and their families. She is a member of ILADS and advises a number of Lyme patient advocacy groups. Her website is LymeFamilies.com.