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'm so glad your daughter is making such a rapid improvement. It's lovely to hear she can now move her legs and your absolutely exemplary care has ensured she's survived. In spite of what sounded like absolutely appalling medical care.

However I can see where that nurse was coming from. She had specially ordered a consultant call out to try & help you. Then you refused entry with a perfectly understandable reason. But it may not have seemed like that to her.
This nurse has been very supportive to you so far. You now need her on your side. To access physio etc.So rehabilitation can start. So you do need to try and work with her. Have you asked your gp for a referral to a Long Covid Clinic? Is there one in Bristol?

Long Covid is so new and involves so many different specialties that I'm not sure how much help a private consultation will give you unfortunately.
Though a private physio who will come to your house may be very worthwhile.

Long Covid Wales posts on twitter along with long Covid kids. Following their tweets may be the best way of keeping up to date with the latest Covid information. As far as I can see Wales is really behind on the treatment of long Covid. I can't find any evidence of any long Covid clinic set up.

I do appreciate she had a duty of care to PennyLane but I didn't refuse entry. We had a telephone conversation first and I told her how PennyLane was reacting. I just felt blackmailed a bit and put in a position where PennyLane was extremely distressed. I had cooperated fully with the nurse, Cardiff didn't even put in the initial referral it was me phoning around to get everything in place. But I do appreciate that the nurse had only known her in the two weeks she was home and presented as being a very unwell child in a deep sleep.

I've been told there is a long covid clinic in Glangwili which is virtual so I'm hoping for a referral eventually.
It's amazing that she is back to eating as much as she ever did considering she hadn't eaten since September. She is reading lots and chatting away and isn't in nappies. More than anything she wants to put this behind her and walk. I honestly thought this would end with her dead. Which is awful but it just seemed to get worse.

I'm so glad she is improving. Prayers.