Support thread for parents

[IsThisAkissingBook]

My daughter is 11 (year 7 not 12 until Summer) she first got unwell on the 24th. She didn't have a cough but loss of taste/smell, sick, headache, dizzy and sore throat. We are now at the point where she hasn't eaten in over two weeks. She's sleeping most of the time. We were at the hospital on Thursday and were told this is just the virus and her recovering. Yesterday we saw the GP after she was refusing to drink and she was again sent to hospital for bloods and a drip. But again we are told she has been unlucky and her body needs time to recover. She's had two hours awake today and is sleeping again. She can't stand without support and she can't walk. We are sleeping downstairs with her on the sofa and it's just awful. She was perfectly healthy before, she's never even had antibiotics.

Sorry if this is jumbled and spelling errors but I'm shattered and so worried. Has anyone else's child been like this?

I know nobody has replied but thought I would update for anyone who finds themselves in this position.
She is still not eating so the GP has prescribed sip drinks. She can't put any weight on her feet at all, we have use of a wheelchair and managed to get her fresh air for an hour on Friday. But she was shattered afterwards so yesterday she was awake only for 15 min periods and was dozing on and off. I have to encourage her to drink which is hard and she's only passing urine once a day. Everyone has said it's post viral fatigue and can take some time to recover from.

I'm so sorry to hear your daughter is this poorly. To answer your question, she is not alone - I have known four or five children similar. For them, it's got much better after three or four months but they are none of them quite back to how they were after 8 months. I think the stats on long covid in children are around 14% of those infected but some of those 14% presumably made a quicker recovery than the children I know.

Allowing this aspect of covid to run so high amongst children is absolutely criminal IMO. Everyone who has had absolutely anything to do with the slow rollout of the vaccine amongst 12-15s in any way should hang their heads in shame.

Thank you for replying. Horribly it's reassuring to know she isn't alone. But it's so frustrating that there is nothing that can be done at all.

Do you know if the other children are left still needing a wheelchair after a few months?

I think your poor DD has been extremely unlucky. The kids I know who've been affected have not been anywhere near as ill as this. However, I am just recovering myself, and I have to say I have been very unwell indeed. It definitely isn't the mild cold for lots of us that I've seen it described as. Hopefully, your DD's prior his health will mean she is able to make a full -albeit slow - recovery. The conditioning drinks should help her to build up strength. I concur very strongly with the poster above who said that the slow rollout of vaccinations for young people is disgusting.

Do you know if the other children are left still needing a wheelchair after a few months?

No, that hasn't been my experience - I'd say they were mobile but needed similar amounts of sleep in early days as you describe. I hope you see some improvement soon.

Just an update we are now on our second night in hospital.

I'm so sorry that you are going through this. I hope she starts to make a recovery soon. At least in hospital she can get IV fluids etc.
It must be exhausting for you as well.

Sorry to hear your daughter is unwell. I guess not eating and drinking is going to make her feel awful on top of any post viral fatigue. You might find if she regains her appetite she will improve quickly.
I don’t have any advice I’m afraid but I just wanted to say I had whopping cough as a teenager and I remember feeling so ill I thought I might die. After a week or two in bed I literally could only managed to walk to the neighbours house and back. That is probably more than your DD can manage but I gradually got further and further every day and was probably recovered within a month or two. Hopefully her taste will return soon and then she will feel more like eating and drinking. It must be such a horrible time for you all.

So sorry to see this. I'm afraid I have nothing useful to add but just wanted to send my good wishes for your daughter.

Sorry to hear about your daughter and hope she gets better soon.

Sorry to hear about your DD and hope she recovers soon. It must be very frightening. Agree with PP who mentioned those thwarting the vaccine rollout. There is a longcovidkids account on Twitter. They may be able to help/put you in touch with people who have had similar symptoms, (even though your daughter was only recently infected and obviously very much hope she doesn't have LC).

Just sending love and support. I've so far only heard of one child with long covid and the school has been advised to make adjustments to allow for sleeping, rest etc. They are only a month or so in.

There are a few MNers with children with long Covid. I won't put their names here in case they don't want to be tagged but hopefully they'll see your post and come and reassure you.

Just wanted to add my best wishes. I know you are in hell, and I hope your daughter is getting the help she needs. Young bodies can be miraculously resilient.

She is now being tube fed which she can't keep down at the moment. She's here until she can manage to stand and when she's drinking the required amount of calories. They are doing it slowly because of refeeding complications. What really doesn't help is Pembrokeshire hospital has no children provisions. I feel for parents with no car or family...or funds. But the consultant has said though rare he has seen several children with this post covid fatigue.

Just saw your update. I don't have anything useful to say, just want you to know that you're in my thoughts.

So sorry to hear about your daughter and hope she gets better very soon. Hopefully once she’s keeping down food she might start to feel a bit better.

Just offering a handhold. Sorry I don't have anything useful to say.

So sorry to hear how unwell your DD is OP, she is very much still in the acute phase. It must be very worrying for you.

Are they consulting with paediatricians in a larger paediatric hospital regarding her care if they do not have a specialist area for children and paediatricians there?

www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/paediatric-inflammatory-multisystem-syndrome-pims/

www.rcpch.ac.uk/resources/paediatric-multisystem-inflammatory-syndrome-temporally-associated-covid-19-pims-guidance

OP, how absolutely bloody awful — I am so sorry. It must be really distressing to see her going through this.

Thinking of you both.

Oh the poor thing, I hope she improves soon.

Thinking of you and your DD, @IsThisAkissingBook. I don’t mean to push you to update though — just really hope things are no worse, ideally better.

So sorry to hear about your little girl, thats truly awful she is having to go through this. My daughter was 1.5 weeks which I would say was about average in her age group, year 11, flu like but made a full recovery. I am double vaccinated but have had similar to your daughter, mine started on 13th September and then worsened a lot around a week ago so could not keep any food or drink down, stand or walk and constant diarrhea and dizziness.

I am glad she is in hospital, I had to fight to get in but being on a drip meant I could stand again. I would push for her to be kept in on a drip or similar treatment. Antibiotics made me worse but depends what she has, my body just could not cope with no food, no drink, no sleep and drugs on top. I think as long as she continues to receive treatment she will make a full recovery but it is slow as her body has been through a lot. They should be doing tests in hospital to check for other conditions like blood tests, chest x ray, stool sample, heart if chest pains but some people do get this as long covid, mine was put as covid, long covid, viral gastroentertis, infection and I really feel for her as you do feel close to death after a few days of it. Hope she gets better and look after yourselves. Just knowing her Mum loved her and was there for her will mean a lot to her right now.

I am also shocked at how long your daughter was left not eating and drinking before being put on a drip, she should have been in hospital much earlier.

I'm so sorry OP. Praying she recovers soon xx