We know now is a difficult time for all as we try to navigate through the COVID-19 pandemic. As we serve a global community, we want to share some insight, guidance, and reassurance to our families.
We have heard from many of you that you are anxious, nervous and scared. We know you have questions about how to get through this time. That is why we have reached out to some of the most knowledgeable clinicians in the world, who also happen to serve on our Medical Advisory Board, to ask your questions.
First and foremost, listen to your local authorities regarding social distancing measures and other important guidelines. Many in our community already do this for their at-risk children, and it is important now more than ever to heed this advice.
Take the time to read through this, and if you have other questions, let us know and we will do our best to get them answered for you.
We are all in this together. Take a deep breath. We will get through this.
Be sure to utilize all of our community resources this time to look after yourself, your children, and family.
FREQUENTLY ASKED QUESTIONS
Q: The CDC says that people with neurological and neurodevelopmental conditions, such as cerebral palsy, epilepsy and developmental delay, may be in a higher risk category for COVID-19. What does that mean for my child?
A: Not much data is available surrounding children and infants with COVID-19. All that we know, as of this moment, is that children--if they do get the infection--seem to have a very mild version. However, the risk is elevated in those with neurologic conditions because in general, these people have more trouble both protecting and clearing their airway than others, which leads to an increased susceptibility to pneumonia.
In addition, if your child is treated with steroids (prednisolone, ACTH), their immune system is vulnerable. It is even more important to avoid any contact with people who may have infections.
However, data from other countries suggests no increased mortality in children as a whole. Anecdotally, in Seattle, where cases have been higher, while adult ICUs are facing major issues with capacity, they have not seen the same phenomenon at the pediatric hospitals.
Q: What should I as a parent be doing to try to protect my child from getting ill?
A: In general, the advice to families of children with HIE would be largely the same as to all families with children, but perhaps enforced more rigorously:
- Don't send kids to school
- Clean/disinfect contact surfaces at home regularly
- Keep kids away from anyone with symptoms of any illness
- You, yourself, as caregiver, should practice excellent hand hygiene and avoid face touching, etc.
- Avoid travel and exposure to crowds (grocery store, church, etc.)
- Basically, shelter in place
- Contact your child's pediatrician if ANYONE in the family develops symptoms of the coronavirus (fever, cough, trouble breathing) and ask for further guidance.
Q: Should I take my child to non-critical appointments, such as check-ups, therapies and consults?
A: Parents of children with HIE who have scheduled appointments for matters not related to an acute illness (equipment or therapy prescriptions, for example) should ask about those services being provided by telemedicine or even over the phone, rather than bringing the child to a crowded waiting room. Most major medical centers either have a robust telemedicine program or are developing one.
The usual rules about “the child must be seen in person” should be set aside during this time.
During this time, your child’s medical team will be working hard to continue caring for your child’s conditions. If you are worried about seizures, or other important health concerns, that are not necessarily related to Covid-19, please do not hesitate to contact your providers.
Q: What can I do at home to replace those therapy visits?
A: There are a lot of very beneficial things you can do right at home! Instead of attending your child's therapy appointment, take that time to complete home exercises. Ask your therapist for additional ideas and recommendations you can do at home. I'm sure most would be happy to put something together for you over the next few weeks as we follow medical expert recommendations regarding COVID-19.
Q: I’m pregnant and concerned. What precautions should I take?
A: Now, more than ever, it’s important to protect yourself and practice social distancing to minimize your risk to exposure. We recommend the following resource:
Q: We have home health nursing services. What should we ask about?
A: At this time, there is no overarching guidance provided by any medical entity regarding home health nursing that we could find. Be sure to contact your case manager and ask questions about their contact precaution procedures and training for this situation. Here are some resources from the National Association for Home Care & Hospice:
For additional information on COVID-19, see resources below:
World Health Organization:
CDC Guidance on Children:
Questions? Reach out to firstname.lastname@example.org.