Waiting for PCR results for CEV daughter.

[BabbleBee]

DD13 is CEV due to learning disabilities, PVNH and possible epilepsy. She’s in a mainstream school who are following current government guidelines.

I’ve been half expecting this to happen but now we are here, my heart is in my boots with worry. She had a positive LFT yesterday morning with a high temp and feeling unwell. We got a PCR at lunchtime yesterday. I did one too to reassure her before hers was done. My older DD had a PCR earlier in the week and the results were back in less than 24 hours, she was negative.

I’m getting impatient now. I think it’s very unlikely she’ll be negative as she’s coughing, no taste or smell, feels unwell. The result won’t change anything but I just want to know. I have no idea how Covid will affect her, it may be that she’s absolutely fine, but she could also be very, very unwell…

I’m not sure what my point is but if anyone reads this and can keep her in your thoughts, a virtual handhold, and make my phone ping with that text, it would be great!

Hoping she feels better soon

Hope you get a negative result ASAP

I am CEV and got covid quite badly during the summer
My gp surgery delivered a pulsoximeter to me and that really reassured me when I felt like I was struggling to breathe as it clearly showed otherwise
I struggled to eat - so warm ribenna and bizarrely ready salted crisps were all I could manage

Thank you for the good wishes.

@Strugglingalone I hope you have recovered well? I have a pulse ox at home and have checked her Sats which are fine. Her temp is down today and staying normal without paracetamol.

I probably should have said that I’m a nurse and probably too aware of worst case scenarios which I need to shut off and just be a mum. Difficult to do.

@BabbleBee that must be though.

Fingers crossed for you. Has she had vaccine being cev? That should make it much less likely that she gets seriously ill.

Due to be vaccinated next week…

I’m thinking of her OP. But I think you need to accept that lateral flows very very rarely say you’re positive if you’re not.

I hope she doesn’t feel too unwell

I hope your daughter isn’t feeling too bad. If she has got covid, although it’s annoying that she was due to have her vaccine this week, try and flip it in your head, that if she had been severely susceptible to covid, it is likely she would have already had a vaccine in the first phase of children in early Sep. So fingers crossed for you that she will be ok.

Sorry OP, with positive LTF and symptoms, it sounds like she does have it. Hopefully it will turn out to be a mild case and she will be fine. It's very scary when they are CEV, but it doesn't necessarily mean that she will get really ill with it - I know a few CEV people who have had it very mildly. I hope she feels better soon.

Sending you both a handhold, OP x

CEV person in the household here, so I think I get it.

But, from what you've written, it doesn't sound as though your DD has any immune issues (or does that come with the PVNH?). In which case there's an excellent chance she will not have a nastier case of the disease than any other child.

As her sats are good and her temperature normal without medication, I really think you'll be OK. I have my fingers firmly crossed for her!

Sending you a virtual handhold. If she isn't feeling too rough could you all wrap up and have some time outside (and grab a bit of sun/fresh air, assuming that we have similar weather)?

You sound very well prepared and now is the time to trial streaming services and whatever e-things your library offers by way of books and audiobooks.

Thanks all.

When Covid first emerged there was debate about her CEV status. She doesn’t currently have a paediatrician, so in the early days I spoke to our GP about how worried I should be as she hadn’t been formally identified as CEV, but we were being told people with Learning Difficulties were vulnerable - a huge demographic of people with vastly different needs. DD has 3 types of brain malformations which may have nothing to do with her learning problems, but do put her at increased risk of epilepsy. GP said she should be treated as CEV and could not afford to have a pulmonary disease which, if severe, could lead to hypoxia and that her risk was high due to the malformations, possible epilepsy and learning difficulties combined rather than being immunocompromised. Basically saying that she couldn’t have anything happen to the healthy parts of her brain.

Despite my efforts, she has never been formally identified as CEV so didn’t get the early vaccination and we had to sit tight and wait for the school based vaccines to come out. Hopefully she’s strong enough to keep this at a normal level of a child her age and it doesn’t progress to anything that can compromise her oxygenation.

The PCR tells me nothing more than I already know to be honest, but I would like it confirmed. We’ve had a few people locally who have had positive LFTs with negative PCRs and I really don’t want that level of confusion or to have to repeat the PCR in a few days, as they’ve had to.

My middle dd has just tested positive, she is CEV too. I’ve been worried sick (myself and youngest dd cev too). She was due her vaccine yesterday and obviously missed it.
We’re on day 3 now and I have to say luckily it’s not as bad as we expected. Rest of the family have all come back negative so far thankfully. She has a high temp, headache and losing her smell, but the temperature eased by day 2, although the tiredness is still quite bad, she hasn’t had any additional seizures which I was expecting.
We’re obviously watching very closely and know things can change but hopefully to ease your mind in our case. I can fully understand the worry so sending you unmumsnetty hugs

@Froppysue thank you for sharing, that’s reassuring. DD has only had one seizure with an abnormal EEG but it didn’t show where the seizure came from. I hate the uncertainty! Glad your DD is doing ok and I hope she recovers quickly.

Thank you, and the same to your dd. My dd is classed as moderate cev (I’m high myself). It’s quite hard to explain the panic when you first see that test isn’t it!
My dd has had regular seizures since March, possible epilepsy with abnormal ecg (still in the midst of diagnosis) but she has a confirmed autoimmune disease too. Hardest thing for me is not being able to cuddle her!

PCR is positive… mine is negative which is good, the rest of the family are negative on LFT.