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?

@IsThisAkissingBook Just read the whole thread and I'm dumbfounded by how poorly they are treating your poor daughter - this is truly shocking and I'm so so sorry you're all being put through this. My daughter is the same age and she would likely be traumatised, if they're so concerned about her mental health perhaps they should try harder not to give a very unwell child ptsd on top of everything else she's having to endure right now, makes me so angry! Agree with other posters can you insist on second opinion from another senior paediatrician, preferably one working in the long Covid ward they hadn't told you about! There must be a way to get her out of there and into a hospital albeit further away that has the experience, Doctors and facilities to help her more - I wish I knew what to suggest Have you looked on the Facebook group and Twitter account other posters suggested? There must be someone who has experience or knowledge that can help with advice in some way, I wish I could be more helpful. Also I don't know if it's the same for children, but an adult relative has been in hospital with Covid for several weeks now and the mental health ward are refusing to transfer him there until he's more medically stable. It seems to be a standard practice and they're not supposed to take a patient in, section etc until they consider them medically stable enough to leave the Covid ward first. I'm so glad camhs are not going along with what the doctors want and traumatising your poor daughter further. I'd like to follow your story on Instagram op, maybe with some public support as well things will start improving, I wonder if a local MP would be any help getting your daughter the right treatment? Is your Instagram the same as your username on here? You're in my thoughts, I cannot imagine how horrendous this is for you all

We have been back in since Monday. They need to take her to theatre to do the ng but still waiting for that to bloody happen. There's talk of a lumber puncture and heart scan. They are considering PANDAS but won't treat her until they rule anything else out. So my guess is maybe fucking February they will give her some bloody antibiotics. Fucking shit show I could scream. Anyway my instagram is pembrokeshireveganfamily

So sorry everything is so slow. At least they are suggesting additional tests, this is a good thing. Have they referred to the long covid clinic yet? It seems that could happen alongside the other tests so that doctors more experienced with long covid could assess her?

Wishing you and your daughter the best.

At least they are now finally starting to take her condition seriously. They may start antibiotics after the lumbar puncture. It can affect the sample results if they start them before. They should certainly be thinking about giving them alongside possibly an antiviral if they suspect an infection until the full results come back. This is what they would do as a precaution for suspected meningitis or encephalitis. If they are going to do the NG in theatre they should do the lumbar puncture at the same time to minimise distress.

Focus on your daughter at the moment, but once things are settled down please consider a complaint to PALS regarding her appalling treatment.

I am so sorry you have been so let down.

I'm so sorry. Prayers for your DD

Loads of love to your family @IsThisAkissingBook.

It sounds like an absolute nightmare. I'm so pleased they stopped talking about sectioning and started talking about Long Covid.

That feels like progress at least.

All the best. I hope you get to the long covid pathway sooner than bloody February.

Thinking of you and your daughter OP. I hope the new tests are helpful and it all happens more quickly - and that you don't have to deal with whoever suggested sectioning again.

Quick update she is in intensive care in bristol. She was transferred on Saturday.

@IsThisAkissingBook

Quick update she is in intensive care in bristol. She was transferred on Saturday.

I'm so sorry.

We're thinking of you.

So sorry to read the update. Thinking of you here too. I know i can't even imagine how hard this must be as a parent. When my kids have been in hospital it's been the worst feeling I've ever had, and I know that must be only a tiny fraction of how you feel. Please do try and remember to eat and take care of yourself too OP, difficult though I'm sure it is. I do so hope you have support from family and friends.

Thinking of you and your daughter

Holding you in my thoughts

I'm thinking of you too.
I've read your story with mounting horror. How dare you be treated like this? Your poor poor DD.

I’ve been following your thread and I’m so sorry to read that you are now in intensive care. I honestly can’t believe the journey you have been on. My only hope is that you are now at a recognised childrens hospital where there should be much better knowledge and support, so hopefully your daughter will get the help she needs. Thinking of you and sending virtual hugs.

I have only just seen this, but I am appalled at how your daughter has been treated.

Bristol children's hospital is wonderful, I hope she is now getting the care that she needs 💐

I've been checking in to see how your daughter is doing. I hope you are getting some answers and she is responding to treatment. Best wishes

Op I'm really sorry too hear about your daughter. Must be such a distressing situation for all of you. Sending my lovel. Keep us updated x

The treatment of your daughter has been appalling. Sending you all my love and thoughts xx

@IsThisAkissingBook How is your daughter doing? I really hope you are making progress.

Thinking of you 💐.

This is just awful! Thinking of you all.

@IsThisAkissingBook

Quick update she is in intensive care in bristol. She was transferred on Saturday.

I hope your daughter is doing ok xx

She is home. She was transferred from Bristol to Noahs ark cardiff where she spent two weeks. We had to fight and threaten legal action to get her home. It's a long story regarding mistreatment and many obstacles put in the way. I will post about it when I get a chance.
Anyway this is where PennyLane is at. She sleeps all day and night. We wake her every two hours to give her feeds but she doesn't open her eyes or speak just cries. She then goes straight back into a deep sleep. She's in nappies and on seven feeds a day which consist of meal replacement drinks and 3x calogen shots which is being increased today to 4 and an extra fat shot added. She also is on paediatric seravit and other vitamins/minerals. We syringe feed her but the gastrostomy is looking likely if things don't improve. We have a fantastic community children's nurse who got us a repose mattress and takes her bloods and all at home. She hurried on our entitlement to nappies and has told OT that she needs a hospital grade bed asap and a supported wheelchair. The consultant is doing a home visit with her next week to see where to go from here. All we are told right now is that she has long covid which has caused chronic fatigue syndrome coupled with some form of brain damage and physchosis. Everything is so vague and we just want her to wake up.

Thank you for all your well wishes really appreciate it.

I'm so sorry to hear your update, my heart goes out to you. I hope she begins to make some improvements even in small steps. You and she have been treated very badly