School with a medically clinically vulnerable child? Any suggestions welcome….

[NCforAIBU]

Next week my medically clinically vulnerable child is beginning Yr13 at school. They are going to have a series of appointments at a specialist hospital for potential surgery in the next year to hopefully see if they can fix brain damage from an unknown virus caught just before the pandemic started. My child was perfectly healthy before the virus so this is all new. It states on the letter not to come to the hospital if you have been near covid positive people.
As far as I am aware, pupils from covid-positive families will be sending their children in. It is a 1600 pupil school.
I know we have had an occasional ‘if your child has been in contact with measles or chickenpox please tell us as we have a pupil with cancer as they need to shield’ email in the past. But this won’t be the case with covid as far as I am aware.
I want my child in school obviously it’s an important year. But I am not sure how we are going to tackle this? One way is for the school to ask covid-positive parents to inform the school so my child does not attend those lessons with their more-at-risk children. But then does that make the ‘positive family’ child a pariah? Or does my child’s needs outway theirs? And will it be pointless anyway?
Noblegiraffe mentioned parents on MN will start wittering. Well, here I am!
Also, if we are all ill, I will need someone to look after my child in case of night seizures. Dh and I haven’t any family that could help. How would that work?
These questions must also be going round lots of medically clinically vulnerable families. If this is like yours, how are you dealing with it? Practical suggestions welcome.

Will the school set work and allow them to do it remotely?

I’d imagine schools won’t have all the info. Parents don’t have to share if there’s covid in the house, many don’t test regardless of symptoms and still send them in etc.

The Government need to come up with a plan for CEV children, really all children, rather than take away all restrictions and let it spread.

I can't answer for the Covid at school part. However, it makes sense to plan about who would look after your child if you were ill. Any friends who would have them?

Even if the school sent out a message to parents I really wouldn’t everyone to follow the advice. Ask your DD to reduce her own risk by wearing a mask, hand washing and keeping a distance from others. Perhaps ask the school of your DD can move around the school just before each class so there are less people on the corridor.

I know I will be in the minority here but if my school asked me to keep my DS at home in case someone in the family is covid positive to shield CEV children, I would do it happily.

So sorry that your child contracted that virus. I have lasting damage from an unidentified virus, too. It’s not fair, is it?

Could your child isolate before each appointment? Schools (especially sixth forms) will be good at online stuff now (dd has just finished yr 13) and your ds could keep up in this way. Not idea, but more practicable than dealing with pupils whose contacts and incubation period the school cannot control.

Regarding your being ill - well, as double jabbed (I trust you are!) any covid should be mild. It’s the same as any illness when you don’t have family - you crawl on your hands and knees and the less ill partner has to step up to the plate. I can imagine it would be difficult anyway if you had covid as no one would want to come into an infected house. Practically make sure you have a well-stocked fridge/freezer (and lots of loo rolls!) and organise a supermarket delivery so if you are stuck in you are sorted.

My child has appointments at the specialist hospital once a week or fortnight. We just carry on as usual. Of course wouldn’t attend if Have symptoms or had been identified as a close contact. That’s all the appointment letters say.
If you need an operation Or day work you will be told if you have to self isolate for a period and or take a PCR or lateral flow. They have had to isolate for 48hrs before some procedures and 10 days before others.
If you are worried you could take extra lateral flows before an appointments

Just seen the last part, my child also has epilepsy. We have never been in the situation that we both have been to ill to deal with an emergency. I guess if we were social services would have to arrange emergency care.

Thank you for all the comments.
As you can tell, we don’t really do well with viruses in our house, so not looking forward to the situation we’re going into. Any more suggestions welcome too.

One step I would definitely take is to seek to agree with the school in advance that your DC does not have to attend assemblies, which in most cases don't really bring any educational benefit anyway. The suggestion about being allowed to leave lessons slightly early to avoid crowds is also sensible. My DCs' old school would definitely have allowed that pre-Covid if (say) a student was on crutches.

Maybe you could arrange with the school for your DC to stay home from school for a week before appointments just in case? Not sure there’s really much else you can do, people don’t have to disclose if there’s covid in their house.

Also, if we are all ill, I will need someone to look after my child in case of night seizures. Dh and I haven’t any family that could help. How would that work?

I’m not sure I really understand this question. Wouldn’t it just work the same way as of you got any other illness? Either use family and friends if if that’s not an option you just carry on yourself. It’s unlikely either or both parents would be hospitalised so just look after your DC at home.

Over if we are all ill in bed, we may sleep through the monitors when our child has a seizure. Dh sleeps through many of them anyway! Probably tmi but it’s vomiting during seizures of which we have to be careful. Agree that it’s unlikely we’ll all be ill all at the same time so hopefully this won’t happen with covid.

Yes will speak to school about assemblies. Not sure about leaving it a week before hospital appointment - there’s going to be so much school missed! Will speak to the hospital.

Get your DC vaccinated (if you haven't already), then double vaccinated (CEV and CV can have double), unless it is absolutely medically contraindicated. Vaccination is the very best thing your DC can do.

Have your DC wear a mask in school at all times. A good quality mask. You can get washable reusable FFP2 masks (Cambridge Mask Co. for example). FFP2 masks protect the wearer.

Have DC shower than they get home, wash their clothes when they get home.

Wipe down their school stuff and wash their water bottle and lunch box each day etc.

Send them in with a small hand gel to use regularly throughout the day.

Take as many immune-system boosting vitamins/minerals/supplements as possible.

Ensure DC gets plenty of sleep and rest.

Noblegiraffe mentioned parents on MN will start wittering. Well, here I am!

I don’t think I said ‘wittering’ as that sounds dismissive of entirely reasonable concerns, particularly in your case. I think it’s outrageous that there aren’t a series of measures already advised/in place for CEV children/families.

The infection rate for her age group is currently extremely high so I think a discussion about this with the school and the people in charge of her care would be useful.

We have 2 children with complex needs and the youngest has a v rare life threatening epilepsy disorder. So he has multiple seizures most days and we also have the vomiting issue so have to suction etc during the night if required. It is a constant worry I know. We use a Sat's monitor that alarms if oxygen levels drop and he always sleeps on his side unless someone is awake and watching him. We have always had the worry of what would happen to the children if we are both ill but so far it has never happened thankfully. I guess we would just muddle through.

Are you all double vaccinated against Covid . I assume you are but what about your child ? Are they able to have the vacine ? Our 15yr old got his first jab this week which has helped us feel a bit better about the return to school. The youngest one has never returned to school since this all started and i have to admit I am much more wary of him picking up any coughs and flu viruses after the last 18 months. I find it hard to be as laid back about any illnesses these days.
As for hosp appoints I would only cancel if your child has been in close contact with someone with the virus and you could lateral flow test before attending as an extra precaution.

One way is for the school to ask covid-positive parents to inform the school so my child does not attend those lessons with their more-at-risk children
Unfortunately that is never going to happen as legally data protection means that no-one has to share their health data unless they give informed consent for this health data to be shared. So it is highly unlikely a parent will agree for their health data to be shared with the school.

I gave a few tips above that we have used to reduce the risk with our own CEV/CV DC. But you have to see it as your own responsibility because your own risks are greater/different to the vast majority of people's. Another pupil at my DC's school of similar age to your DC did do quite a lot of online learning from home last year, but I don't know how that works now that CEV has been removed from most under-18s now so therefore presumably the legal right to shield has also gone. Talk to your DC's school, though I understand you want her in school.

noble entirely agree! I know you meant well from your post - apologies if I paraphrased badly. Teachers get it from all sides - you were just articulating that. School is a risk that, as a mum of a child who has been left disabled by a virus recently, I feel very trapped and conflicted about. Particularly as the government have not got any plan for these children nor staff/families as they either don’t care or it’s too difficult and they are just collateral damage.

user thank you for this info. This is what I hoped for when I started the thread. Some good tips there. We were all vaccinated early on so hopefully be in line for boosters (haha I think there’s more chance of a CO2 monitor).

At least half the people from A Level classes are currently at festivals so I am hoping they get symptoms (if positive) that are testable before school starts in a week.

Also you don't mention vaccination - your entire household should be double vaccinated by now (since you have a CEV person at home?). That should dramatically reduce the risk of you being too ill to care for your DC.
No other measure that you take (or others take to help you) will help as much as vaccination of all concerned.
Plus masks when outside of the house by all concerned where feasible.

Sorry cross-posted about vaccinations!

yes, the sixth formers at festivals issue is a big problem and imho these festivals should not have been allowed. The only good thing is that I've heard there are vaccination tents there! Bit too late for those that pick up Covid when there though. Hopefully they will test themselves (at home at least) before returning to school. My DC will test at home, not school, as we think testing at home is safer (less people around them coughing and gagging)

flapjackfairy thank you so much too. Don’t know how you do it with two. I am so worn out. I’ll look into a sats monitor but I know that will not go down well! We have Seizalarm on an Apple Watch but that’s more heartbeat orientated. It’s an expensive business isn’t it! I have all but given up work too.
user I used to be a teacher so know about health data. Wouldn’t it be nice if there was some leeway though. That’s why I mentioned the emails we got about pupils with cancer and telling the school about chickenpox etc.

I would also add that you may find help/support from a local parent carers group, if you are not already a member of one. They will likely have a facebook group, website, helpline, maybe smaller whatsapp. And the general carer organisation for the county may also be able to help. They tend to have good links with CCG if you need specialist equipment or help.
Plus as a parent carer you get extra help.

user thank you. Unfortunately I don’t think support groups won’t be much use in dealing with the practicalities of school. In an ideal world, the government would have had some guidance on how families and schools could deal with this. Since the Gav has gone missing, I am getting tips from MN!

@NCforAIBU
Contact the Daisy Garland Charity. They provide Sat's monitors to children at risk during seizures. They are amazing . A monitor allows us to sleep as we know we will be alerted if anything drastic happens. It is a scary thing especially in the early days I know. There are epilepsy charities that can offer support or feel free to pm me if you want x

OK, you are right the carers groups won't help with school (except you can ask advice on their social media etc), but it is good to be part of something where it is not just you on your own. Having a physically/mentally unwell child is very isolating. These organisations support you. Other parents may feel that what you are doing/going through is just part of being a parent, but it is far from normal and you are actually a parent carer, and having a child with extra needs is very stressful (no wonder you are exhausted) and you are entitled to help and support as a carer. Certainly it was useful for me with accessing vaccinations etc. There are real-life groups I could go to if I was not an unsociable type, plus whatsapp groups (ditto). My DC's extra needs are not the same as your's but the carers' groups will know if there is anything specific that could help you.

I'm a secondary teacher. I'd get him to email his teachers to ask that if they do a seating plan can he be sat at the back near a window. Maybe ask if he can miss am registration when it's the lead up to an appointment. He should wear a mask too, walk the long less busy routes to lessons etc. School will find a way to help if he asks. I'm having medical treatment myself and it's stressful when working in a busy school.

Thank you everyone. Some good practical advice here - some of which we have done already. Hopefully this has helped some others looking at the thread too.
I know a lot of the long covid stuff has been useful to read on MN as some of it mirrors part of whatever Dc is recovering from!