This is an area which we, as PIMS-TS families probably know as much, if not more about than anyone else, as we are living with it. Within the family support group, we have collective evidence of the following:
See list below for symptoms still evident after 3 months/12 weeks.
This is a quote from BPSU study published in Feb 2021
“Close follow up will be important to monitor long-term complications in children with PIMS-TS”
We are not aware of a national policy for follow up, monitoring or study of the long- term needs of PIMS-TS. Indeed, follow up care varies greatly depending on where you live and the size and expertise of the hospital you are under the care of.
Before they leave hospital/PICU, parents need a clear follow up plan discussed to include
Covid vaccine and other childhood vaccines after PIMS-TS
The advice on this varies from country to country and between clinicians. The following guidelines give a overview, but please seek further advice from the medical professionals who are caring for your child.
Children will still have a degree of immunity from the COVID-19 infection that triggered their PIMS-TS which will protect them until they can receive the vaccine
Here are some links to available support which our members have found useful.
Guidance on the after effects of PIMS-TS - lots of useful information on how to manage these.
Post intensive care Facebook support group USA
Post MIS-C Questionnaire, dept. of Public Health, California
Post intensive care support group UK
What is Post Intensive Care Syndrome?
On grief and moving forward - Long Covid Kids
Self-Care: Long Covid Kids
Supporting children in school with medical conditions
Illness and your child’s education
Tips for teachers:
PANDAS natural treatments
Physiotherapy-Long Covid Kids