This week we invited Joanna Buckmaster from the
Covid-19 PIMS-TS /MIS-C Information, Discussion and Support Group
to share her thoughts on the following research.
6-month multidisciplinary follow-up and outcomes of patients with paediatric inflammatory multisystem syndrome (PIMS-TS) at a UK tertiary paediatric hospital: a retrospective cohort study
COVID/ PIMS/KAWASAKI DISEASE- Joining the dots
My son had Kawasaki Disease 25 years ago and like many others,
suffered from heart damage as a result.
KD is the number one cause of acquired heart disease in children.
Despite much research over nearly 60 years,
the trigger/s for KD have still not been identified.
Then came COVID-19 and the KD community’s jaws dropped!
Even before PIMS appeared, we could see links between KD and COVID.
I spent most of the first lockdown trawling through scientific papers.
I hoped that knowledge of KD might lead to breakthroughs in the treatment of COVID and eventually it did.
I now hope that research on COVID and PIMS, which is now treated in a very similar way to KD, might finally solve the mysteries of KD. There is research coming out on this at the moment.
I and many others are convinced PIMs and KD are the same, despite the scientists mostly insisting that they are not.
Then Long Covid in children started to emerge and added another set of similarities with PIMS and KD, particularly with the long-term repercussions.
Some children may have had both COVID and PIMS.
Many may have gone undiagnosed with PIMS as a result.
The lack of Government recognition and support for Long Covid has been appalling, as has the lack of public information on PIMS.
KD parents are used to fighting the term “rare”
which is also now being applied to PIMS, but the Govt seems to be
hiding behind the word on the pretext that they might “scare” parents.
I wonder and worry how many children have had atypical/mild PIMS with no diagnosis but may still go on to suffer repercussions.
Atypical/mild KD can still cause repercussions, particularly if undiagnosed and untreated.
Recently the results of a wide number of research studies have been coming to print.
The latest one is from GOSH published by the Lancet.
Their findings based on only 46 children are that “Despite initial severe illness, few organ-specific sequelae were observed at 6 months. Ongoing concerns requiring physical re-conditioning and mental health support remained, and physiotherapy assessments revealed persisting poor exercise tolerance.”
We fear this is only the tip of the iceberg.
We are planning a poll of parents in the
Covid-19 PIMS-TS /MIS-C Information, Discussion and Support Group to get a better picture of the extent and type of long-term repercussions being experienced by children who have had PIMS.
We can also share this poll with the LCK group for those parents whose children have been diagnosed with PIMS.
We can then look more closely at the long-term consequences of COVID/PIMS/KD and try to join a few more dots.
Joanna Buckmaster
