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COVID-19 and Implications for CdLS

We understand that all situations are different and it is ultimately down to parents and caregivers to decide what is best, schools and settings generally seem to be supportive with family decisions. It is a concerning time for everyone, we have sought advice from our professionals on any extra considerations for our individuals with CdLS.

For the UK specifically, Dr David FitzPatrick says:

"It is very important to follow the most up-to-date advice on www.nhs.uk for high risk groups which will be updated daily. On this site there will also be a definition of what constitutes a high risk individual when isolation is suggested. Wherever possible, well children should continue with schooling; remotely if the schools are closed. The symptoms of COVID-19 in children seem similar to adults - fever commonly > 39 C, cough and occasionally vomiting. Currently it seems that very few children have required hospitalisation. The few admitted children we know of developed symptoms of pneumonia requiring hospitalisation after they had been unwell for a few days. This suggests that the illness can progress from mild to serious (this seems to be much much more likely in adults). Early contact with medical advice is important and, initially, should be via 111 or your GP surgery, so that remote monitoring is in place and the parents know what to look out for. If an affected individual becomes acutely ill, particularly if they have a significantly increased breathing rate, they need to be seen urgently in a hospital setting."

The general advice from SAC President Dr Feliciano Ramos is:

"In the case of CdLS, isolation measures apply the same as for “high risk” members of the population (elderly, people with previous conditions, etc.). Parents (families) of patients with CdLS should take all recommended precautions. If they go to work or to places where they are in contact with other people, those general recommendations should be strictly applied with regard to themselves in order not to bring the virus home. Nevertheless, for any acute situation, specially if it involves the respiratory system (with fever) medical care should be immediately sought. Finally, common sense should always be applied everyday in all their activities inside and out of home.”

In addition, we received a briefing from SIMGePeD (Italian Society for Pediatric Genetic Diseases and Congenital Disabilities), courtesy of Dr Angelo Selicorni. It may not be entirely relevant to the situation in the UK but as Italy are "further along the curve" comparatively, there is some general advice that may be of use to you. It is on this link.

There is also a useful video from the CdLS Foundation USA with advice from MD Dr Tonie Kline and Dr Soma Jyonouchi. Viewable on this YouTube link.