COVID-19 AND BRAIN INJURY - AN INFORMATIONAL SERIES
The contents of this page are for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding this or any other medical condition.
Stacy J. Suskauer, MD
Co-director of the Center for Brain Injury Recovery
and Director of the Brain Injury Clinical Research Center
Kennedy Krieger Institute
My child had a brain injury a few years ago. From what I know children do not seem to get seriously ill as a result of COVID-19. Does that hold true for a child with a brain injury as well or are they more susceptible than the average child?
Some children with brain injury also have abnormal lung and/or heart function. Children with abnormal lung or heart function are probably at higher risk for more severe symptoms associated with COVID-19. Overall it is reassuring that there have been very few cases of children with severe symptoms from COVID-19. Talk with your child’s medical provider if you have questions about your child’s lung and heart health or other specific concerns regarding risk factors for severe illness from COVID-19.
My child has been on an intensive therapy schedule three times a week of physical, occupational and speech therapy since his TBI last year. Due to the current situation, the therapy has been severely curtailed, and we are very concerned about regression, especially because we are approaching the 1-year mark. What can we do to maintain progress and prevent regression?
Talk with your child’s therapists about what activities you can do at home. Telehealth therapy visits may be an option for supporting rehabilitation in the home. Continue stretching programs and use of braces/splints as recommended by your child’s providers. Consider taking advantage of this time to focus rehabilitation efforts on tasks that are naturally performed as part of daily care in the home (for example, dressing and grooming), as some children may learn these tasks best in the home rather than in an outpatient therapy setting. Fortunately, recovery from brain injury continues past 1 year, and many children respond well to periodic breaks in therapy interspersed with bursts of more intensive therapy. In this stressful time, it is also important for children and their caregivers to have time to relax and to find ways to have fun; it is important to make time for those activities too.
My child is on several medications since her stroke two years ago. Are there any medications that may need to be stopped or adjusted because of the possibility that they can compound the risk of contracting or increasing the complications of COVID-19?
Do not change your child’s medication without first talking to your child’s medical provider(s), as changing medications may be harmful to your child. Most children with brain injury are not taking medications that suppress the immune system and thus could increase the risk of contracting COVID-19. If your child is on a medication that suppresses the immune system, contact your child’s medical provider to discuss the risks and benefits of continuing the medication.
We are washing our hands and practicing social distancing. Is there anything else I can be doing to protect my child with brain injury?
Adhering to recommendations for limiting spread of COVID-19 is critical for caring for your family and your community. Caregivers need to protect their own health in order to care for their loved ones. Consider identifying a back-up caregiver for your child with brain injury in case you become ill. Consider preparing written or video instructions for caring for your child, making sure to include an updated medication list and a list of your child’s medical providers and their contact information.
Dr. Gianna Locascio, PsyD, ABPP
Board Certified Clinical Neuropsychologist
Board Certified Subspecialist in Pediatric Neuropsychology
Director of Pediatric Neuropsychology
NYU Langone Hospital Brooklyn
To schedule a consultation: 718-630-7316 | Telehealth visits available
With all of my children home from school I cannot give my 4-year-old who had an in-utero stroke the usual level of attention. Furthermore, the therapists and SEIT are not coming to the house. Of course, my child does not understand the situation. How can I give my child the help and attention that is so badly needed while balancing the needs of my other children and my own home and work responsibilities?
In general, but especially while families are all home together during the Covid crisis, a strict, clear and highly consistent daily schedule is absolutely essential. Consider creating a large, color-coded daily/weekly schedule for each family member that hangs where everyone can see it (large poster board or a dry erase board would work well). Each schedule should include a clear indication of when mom/dad will give 1:1 attention to each child. Of course, the 4 year-old will require more 1:1 “slots” than older children. This should be explained to the older children so they understand that that while they will certainly have time with mom/dad, they are the “big kids” and so do not need quite as much time. Also assign the children slots during to provide supervision and 1:1 attention to the younger child.
For the older children, simply writing each task may be appropriate. However, for the younger child, consider drawing or printing pictures of each task with a picture of mom or dad next to the time slots when parents are available to help. Independent tasks for the 4 year-old will vary based on his/her abilities, but hopefully he/she should be able to independently engage in “fun” tasks alone, such as following along with an exercise video, playing an educational game on a tablet, or completing simple household chores (e.g., collect clothing on the floor throughout the house and place in a laundry bin).
We are not allowed to visit our child who suffered an anoxic brain injury and resides in a long-term care facility. I know that it is so important to advocate for my child with a regular presence. 1. How can I ensure that the care is adequate? 2. How can I reassure my other children who are consumed with worry about their sibling?
A: This is a valid concern for any child. It is entirely reasonable for you to contact a supervisor in charge of your child and arrange for daily calls with his/her caregivers to provide updates and information about his/her current status. This will help you receive information but also develop closer, ongoing relationships with everyone who works with your child. It is also reasonable to ask for the names of all providers who interact with your child, including those who work overnight shifts. If your child receives any rehabilitation therapies (e.g., occupational, speech/language), these clinicians are often extremely helpful contacts who can provide information but also share any concerns they may observe. Depending on your child’s communication abilities, he/she may be able to express information about care. If he/she cannot communicate, ask that a caregiver or therapist call you regularly via a video platform (Facetime, Zoom, etc.) and look out for any changes in his/her appearance, mood, or behavioral presentation.
Encourage your other children to be part of these calls so they can feel reassured about your child’s care. They may also want to make cards, care packages or send comforting items (as permitted) which you can also request to “see” during video calls. Regularly provide reassurance that their sibling is well cared for – even when you are anxious or worried. Modeling calmness is extremely important, as children often take on their parents’ emotions. If concerns arise, they do not necessarily need to be made aware; many topics are best for discussion between adults only. If you or your child find that anxiety or worry are negatively impacting your ability to function (e.g., mood or behavior changes, difficulties sleeping) consider seeking therapy with a clinical psychologist. Many health providers are currently offering telehealth visits, which are covered by insurance. Call your insurer for a list of covered providers.
My child is very impulsive as a result of a frontal brain injury and it is therefore almost impossible to enforce the recommended social distancing, hand washing, and other precautions. What steps can I take to maintain an acceptable level of compliance?
Behavior management techniques are an essential component of compliance for all children with impulsivity, and are particularly helpful for children with brain injuries. Use of positive reinforcement is the most effective - use of rewards, privileges, incentives, attention, and praise to increase a desired behavior. Over 100 years of scientific research has shown that when something positive occurs immediately after a behavior, the behavior is likely to increase.
Simple ideas include use of stickers, a star chart, or tokens (e.g., poker chips work very well). Create a simple, clear list that indicates how many “points” the child will receive for keeping appropriate distance or washing hands. As soon as your child demonstrates any behavior appropriately (or at least tries), immediately “catch him/her being good” by providing a “point” immediately. Also create a list of rewards together that may be earned as points accumulate. For example, washing hands appropriately might earn the child 2 points. Perhaps the accumulation of 10 points permits him/her to “cash in” those points for 10 extra minutes of playtime, screen time, “special time” with mom/dad, or permission to stay up 10 minutes later than bed time. Rewards do not necessarily have to be monetary in nature; parental attention is often extremely rewarding for many children. Rewards must be motivating for the child –involve him/her in the plan’s design. Also be aware that rewards often become less motivating over time, so the plan needs to be updated and modified regularly. For children under 10 years of age or with cognitive impairments, it is not recommended that they lose points for undesirable behavior. Rather, simply state, “You did not earn points because you walked too close to that person. But you can earn points next time. Keep trying!”
For additional support, consider seeking therapy with a clinical psychologist who has expertise in behavior therapy (this is very different from talk therapy or “play” therapy, which are not helpful for behavioral concerns). Many health providers are currently offering telehealth visits, which are covered by insurance. Call your insurer for a list of covered providers.
My child has behavioral issues as a result of a TBI several years ago. My other children are usually busy with their school, social and extracurricular schedules and don’t interact that much with their brain-injured sibling who typically has a full schedule of school, therapy and respite. Now that they are all home full time, my children are reacting with varying degrees of shock, anger and distress to the behavioral and emotional problems which have only gotten worse during this time. How can I explain what is going on and try to diffuse the tension and confusion to some degree?
Consider family-based behavioral therapy with a psychologist to help better manage your child’s behavior, and to provide psychoeducation and support to your other children. Behavior and emotional difficulties are extremely common after brain injury, but extensive research has shown that behavioral techniques are extremely helpful. Talk therapy and play therapy do not have strong support.
Project LearnNet – TBI videos and tutorials for parents, children and teachers http://www.projectlearnet.org/tutorials.html#behavioral
Center for Positive Behavioral Interventions and Supports (PBIS)