How to Navigate Coronavirus As A Caregiver For A Child With Sanfilippo Syndrome
The Coronavirus pandemic adds another layer of complexity and concern to people and families dealing with chronic illnesses and diseases such as Sanfilippo Syndrome.
The concerns of contracting Coronavirus, how to avoid exposure, and what to do if exposed reach a different level given the already complex nature of daily life with Sanfilippo Syndrome and its impact on children’s bodies.
To provide parents of children with Sanfilippo Syndrome with information and advice specific to their reality, Cure Sanfilippo Foundation coordinated with Dr. Heather Lau to record a discussion of Coronavirus and how it specifically relates to Sanfilippo Syndrome. The in-depth Q-and-Answer session answers more than 20 questions submitted by parents of children with Sanfilippo.
Specific questions that are answered:
- What is the novel coronavirus, and why is it so serious?
- How do we handle decisions about having care aids, nurses or therapists come to our home? What can we do to make their visit as safe as possible?
- What is the proper way to wear a mask and use or take off gloves?
- What kinds of things do we need to have at home to be prepared in case our child or someone in the home gets sick?
- What aspects of Sanfilippo syndrome could put our children at higher risk of catching novel coronavirus?
- What are the biggest risk factors for getting severely ill if children with Sanfilippo syndrome catch the novel coronavirus? Is there any evidence that our children will be “hit harder” by the virus or not?
- What are the biggest risk factors for getting severely ill if children with Sanfilippo syndrome catch the novel coronavirus? If my child has had a previous case of serious pneumonia, will he/she be more likely to be seriously affected or not? Are there any long-term respiratory complications of the infection?
- Does coronavirus cause increased secretions? For children who have trouble handling excess secretions and are at risk of aspiration, how should we prepare for this? Should we have a suction machine available at home?
- When will I know it is time to take my child to the doctor, knowing that going out will increase risk of exposure?
- Heart problems in people with Sanfilippo can range from mild heart valve thickening to cardiomyopathy, can this be more of a problem if our children catch coronavirus?
- If my child gets sick, is there anything I can do to decrease the likelihood of it becoming severe? Would any supplements or vitamins help my child?
- If my child gets sick, what are the home-caregiving instructions if hospitalization isn’t required?
- We have heard that ibuprofen may make COVID-19 worse. Is this true? Is it ok to give Tylenol to our children who have elevated liver enzymes?
- We have heard on the news about the use of hydroxychloriquine and azithromycin for COVID-19. Are those medications safe for people with Sanfilippo syndrome?
- Children with Sanfilippo syndrome often uncontrollably put their hands and other items in their mouth. How can we protect our children from catching COVID after stay-at-home orders are lifted?
- If my child has to stay in the hospital, would I be able to stay with him/her? Should we ask our doctor for a letter stating that a parent needs to be with the child in the hospital due to his/her behavioral challenges with Sanfilippo syndrome?
- Do you think a future coronavirus vaccine will be similar to the flu vaccine or could there be other potential contraindications?
Dr. Lau is a pediatric neurologist and Director of the Lysosomal Storage Disorders Program at NYU School of Medicine in New York City.
“We thank her for taking the time to answer questions about Coronavirus as it specficially relates to Sanfilippo Syndrome, providing critically important information to parents and caregivers around the world,” said Foundation Chief Science Officer Cara O’Neill, MD, FAAP. “Additionally, we wish her and her team on the front lines all the best as they continue to tirelessly serve patients.”
Additional Coronavirus Resources
- Video: Scientific Update on Sanfilippo Research, Coronavirus Impact
- Foundation Statement: Impact of Coronavirus on Sanfilippo Community
- Financial Relief: Apply for NORD’s COVID-19 Critical Relief Program (up to $1,000 to support people in the rare disease community with critical, non-medical needs)
- Webinar: NORD on COVID-19 and Families w/ Special Needs
- Center for Disease Control (CDC): Information on Coronavirus & People with Chronic Medical Conditions
- Center for Disease Control (CDC): https://www.cdc.gov/coronavirus/2019-ncov/index.html
- HealthyChildren.org: https://healthychildren.org/English/health-issues/conditions/chest-lungs/Pages/2019-Novel-Coronavirus.aspx