Follow-up Care after PIMS-TS

Shining a light on PIMS-TS
( Paediatric Multi-inflammatory Syndrome temporally associated with SARS-CoV-2 )

Follow-up
Care

Follow-up Care

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:

Children who have suffered long term life changing physical damage such as leaky aortic valves (MVR), dilated coronary arteries, coronary aneurysms, junctional tachycardia, kidney damage.
POTS, PANS and PANDAS induced by trauma or viral infection.
Children and family members who have suffered medium to long term life changing psychological damage such as PICS (post intensive care syndrome), PTSD, panic attacks, phobias, and anxiety.
Children who suffer from short/medium and possibly long-term post PIMS-TS symptoms

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.

"The lack of long-term follow-up data on these children means that it is difficult to anticipate and plan for their community health-care and surveillance needs following recovery. It is unknown whether these patients might have long-term health problems, particularly those with echocardiographic abnormalities of coronary arteries. We did not identify any differences in clinical presentation or laboratory data to indicate potential prognostic factors for prediction of coronary artery abnormalities." (Intensive Care Admissions Study - The Lancet, Vol.4 2020)

We are calling for the UK Govt to establish coordinated follow up care, monitoring, and studies on the long term effects of PIMS-TS, similar for that being set up for Long Covid children.

We are very grateful to GOSH Charity, Guys and St Thomas’ Charity and Imperial Health Charity who have jointly put forward a grant of £282,000 to begin a study into the long-term neurological and psychological impact of PIMS-TS in children:
GOSH Media Centre - Study of Children's Inflammatory Condition Caused by COVID-19

Here is a list of physical symptoms following PIMS that are evident for 3 months/12 weeks or more, listed in most common to least common order, compiled by PIMS-TS families.

Fatigue
Pains: leg and back, stomach, back, abdominal pain
Muscle cramps
Hair loss
Red eyes, especially when tired
Brain fog
Very cold hands and feet
Blurred vision and headaches
Heart pain
Feeling sick
Diarrhoea and constipation
Widespread rash
Circulation issues
Reduced concentration
Higher than normal heart rate
Dizziness
Reduced appetite, restricted food choices
Tics
OCD tendencies
Trembling hands
Blood in stool
Fainting
Stuttering

This is a list of emotional/mental health repercussions of PIMS both in children and their parents and siblings in order of most common to least common, compiled by PIMS-TS families.

Anxiety
Anger
Trauma
PTSD
Worry about getting PIMS again
Panic attacks
Struggling to make decisions
Personality changes
Extreme sadness and depression
Worry about getting Covid again
Self-harm
Difficulty regulating emotions
Negativity
Confidence regression
Fear of more medical interventions
Insomnia
Sensory sensitivities

These are some posts from our support group that illustrate the needs of children and families post PIMS-TS.

In summary

Before they leave hospital/PICU, parents need a clear follow up plan discussed to include

Clear explanation of medication that has been prescribed and any side effects or contraindications with other medications to be aware of.
Guidance for children with myocardial injury on restriction on physical activities.
Information about when and if vaccinations are possible and childhood illnesses such as chicken pox that may be problematic after PIMS-TS
Contact numbers of medical professionals that parents can use if they have any concerns
Dates of follow up appointments and names and contact details of who these are with.
Guidance on returning to school in a phased manner and contacts for support and guidance with this.
Suggested parent support groups (especially ours), school reintegration groups, counselling options, mental health support, family therapy, play therapy, CBT and EMDR therapy etc.

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.

If PIMS children have been treated with IVIG, then it is recommended that they wait for 3-6 months afterwards. This is because the IVIG might prevent the vaccines from giving maximum protection.
PIMS children should not receive live vaccines such as the flu nasal spray for at least 3 months but rather the inactivated flu vaccine injection.
If you had a vaccination in the weeks before you had PIMS, you might need to have a booster if you’ve received IVIG but wait for 3-6 months.
If you had anakinra or tocilizumab, you should wait at least six months to have any live vaccines.
For COVID vaccinations, it is currently recommended that you should wait until three months after PIMS-TS.

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