As you can read in my “About me” I was diagnosed rather recently having SCLS (September 2019). I am not sure that this item was already discussed before but I have an issue on which I would like the opinions /experiences of fellow SCLS patients. How do you feel about taking care of sick young (grand)children being a SCLS patient? My wife took care of our grandchildren when they were sick and were unable to go to the kindergarten or school. Now we feel not comfortable with this me having the SCLS diagnosis. Of course the circumstances have changed recently with the Covid-19 situation but I would like to hear your opinions regardless if there is Covid-19 or not. Thank you for sharing your experiences.
Hans (Belgium)
Hi Hans,
In my opinion I would in no way even consider doing this. Although young children do not catch and spread the coronavirus it is still possible and too dangerous. See Arturo's previous post on this. In addition other respiratory viruses which could cause the illness in your grand child could also cause an attach of the SLCS.
I would even only meet up with social distancing even when they are well. As SLCS we are simply too vunerable to this disease.
Best wishes,
Kevin
Hello Kevin
Thank you for your reaction. I fully agree on being very careful during these uncertain Covid-19 times.But my question concerned also what to do during "normal" times.read no Covid danger anymore (while there is a goodworking vaccine).
Best wishes
Hans
Hans, your question is an important one, especially now given the Covid-19 pandemic. Before the pandemic, we helped take care of our grandchildren even if they were sick. As a result, we often caught their colds and got sick ourselves, but we weren't afraid of my having an episode of SCLS because my full dose (2 gr/kg/month) of IVIG had always protected me.
In the meantime, my older brother (he is 77 years old) and his wife, who are both retired physicians and they don't have any serious, underlying medical condition -- never mind SCLS -- had a policy that they would not visit or host their grandchildren if they had a cold or other sickness.
But then in January my wife came down with Influenza A and she gave it to me, though it was not the fault of our grandchildren, and even though we both had been vaccinated against the flu, but this time it triggered my first episode of SCLS in more than 10 years, see https://rareshare.org/topics/1967 Therefore, even if there was no Covid-19 pandemic, now we would probably not see our grandchildren if they were sick.
One of the few good things that have come out of the pandemic is that during these months of strict isolation, our grandchildren have not been sick, because they have not been playing with other children. Therefore, we have spent a lot of time with them and we have also not come down with any sicknesses. We have enjoyed this togetherness very much.
The dilemma we face is what are we going to do, as a family, if schools reopen in a month's time, even if for two days a week, rotating smaller groups of children so that they can keep their distance from other children? Will our grandchildren start to pick up colds and other childhood illnesses once again -- never mind Covid-19 -- despite the best efforts of schools and parents? Should we stop seeing them for a month or two, until we see what happens? It is a very tough decision.
I don't know about you, but spending time with our grandchildren keeps me motivated to live on.
Arturo
Hans,
We are not in normal times - Covid is still spreading in society and will almost certainly increase as we go into winter and more people return to school & work as well as spend more time indoors. Belgium and the UK are both faired badly in terms of the spread of this disease and some parts of the US are heading for very high levels right now. Have a look at Our world in data website for the infection rates in different countries. Infection rate are still significant.
Schools in the UK plan to open full time and full capacity in September. I have spoken to friends & colleagues who taught whilst schools partly reaopened in June/July - social diatancing of children simply does not happen deapite continual reminders. I am a teacher and was very worried about returning but my school has agreed for me to continue teaching from home.
I cannot beleive you are considering meeting up with grandchildren when schools reopen without social distancing - for me its completely crazy. When my chlidren go back to school I will be isolating myself from them as strickly as practicaly possible. Not easy but worth it to ensure I don't get this virus. Remember as I understand it we are probably oner of the most vunerable groups of people as not only can the covid-19 disease kill us but it can also trigger an attack of our condition.
Needless to say I am very caustious.
Best wishes,
Kevin
Hello Arturo and Kevin
Thank you for your reactions. First of all note that I realise that since March this year we are not living any more in a world we used to know. The danger of the Covid virus is everywhere and is not yet over. On the contrary, after a period of a little bit of some optimistic news (infections going down) some people thought the virus was gone and acted like the virus did not exist any more. In Belgium (and I think in several countries in Europe) the infection rate is going up again and we all hope that people take their responsibilities again.
For the moment (and this since March) me and my wife only meet very few people and only ) outside in the garden and keep 2 meters of distance (including family. One of the reasons of my question is that since I was diagnosed SCLS there was hardly a normal time. I left the hospital in December last year and in March there was already a lockdown. So I would like to hear from other patients how they coped with the split between the CSLS disease and meeting litlle grandchildern being a litlle bit sick in non Covid times.
So I keep on being very careful and I hope for a solution for this Covid-19 soon, although I realise that a vaccine will not be available very soon. So hoping for better times....