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?

Thank you for taking the time to update us. What a mammoth journey you are on. I really hope things start to improve. It sounds like at last you are getting some good support - sorry it has taken this long. Best wishes to you and your girl.

Goodness OP, I’ve just RTFT and I’m so sorry, this is just so awful for you all. Sending nothing but love to you and your little girl.

God @IsThisAkissingBook what you must all be going through. .

I’ve been wondering how you were getting on. I’m so glad you have a community nurse fighting your corner for you, but dear Christ, you shouldn’t have to battle to get help where help is so clearly needed.

I don’t know what to suggest except to write to your MP. If motivated to do so they can often have more “cut through” with the powers that be than you can.

I’m so sorry that you’re all going through this. Loads of love from our house. xx

I'm so so sorry that you are going through all of this. My heart goes out to you and your little girl.

I am so so sorry for you and your lovely little girl. I am sorry you have been so badly let down.

I posted before as I had similar symptoms to your daughter with covid and I have had further test results back since and after a month from hospital visit they told me I tested positive for campylobacter as well as the covid / long covid. Sorry I went away but I also got diagnosed with breast cancer and they have found another mass on adrenals which could be mets.

I presume they did a stool sample on your daughter, sometimes with covid it can cause other infections though that sounds so severe. I also showed scarring on lungs on ct from it. I would try contacting your MP, is it Stephen Crabb? And I might be tempted to go to press but you probably have enough stress already. Please feel free to PM me and I will try to help.

If your MP is Stephen I used to work with him, and know him and his wife, I've not been in touch for a few years but have his e-mail etc details.

I have no medical background but I think sometimes covid can trigger guillain-barre syndrome and I wonder if it would be worth getting her tested for that as she is so immobile if they have not already:

www.nhs.uk/conditions/guillain-barre-syndrome/symptoms/

I'm so sorry for what your daughter and family are going through. I have an 11 year old dd myself and just can't imagine it. I hope she receives the care that she deserves and you start to see an improvement soon.

I saw this and I wonder if this is what she has, it mentions a doctor at UCL, I wonder if its possible to make contact with him and ask his advice. May need to go private. I think you need someone at the top of their field medically more than MP though could try both.

www.dw.com/en/coronavirus-brain-damage/a-54111054

She woke up on Thursday! Slowly opened her eyes and by the afternoon was starting to talk and was asking for food. Which is crazy because she hasn't eaten since September. It's a bit of a dream right now because the community nurse was coming out with the consultant on Wednesday and it was highly likely he wanted her to return to Cardiff to have the gastrostomy. She remembers nothing since before she went into Glangwili the third time. Crisis team have said this is part of the trauma and that it may start to hit her further on. She can't walk or move her legs still. Thank you everyone for your support. It means so much. Anyway here is a smiling PennyLane catching up with her advent calendar

Oh absolutely brilliant news for you 🤞❤️.

That’s fantastic news! Hoping her recovery is as fast as possible from this point. You must be absolutely shattered from the stress and worry, I hope you can nurture your own health at this time too.

Oh my word - I have just read your journey - how utterly horrific. I'm so glad she has woken up, that is amazing news. I am praying for a quick recovery from here on in - for all of you.

Wow! Just read this whole thread. How bloody horrific for you all. So pleased she's turned a corner at last. Hopefully this will be the start of a full recovery x

Brilliant news!

So glad to see she is looking much better than she was.

I am utterly shocked by this thread but I am so relieved for you that she is awake now as I was thinking the worst after 100 posts

Also just found and read the whole thread. What an absolute nightmare for you but gosh the joy of seeing her smiling and awake… hope things continue to go well for you all

How is your daughter doing now? I’ve just read the thread and feel so sad for you all, what a horrific time you’ve all had! I really hope she’s continuing to feel better at home now and you can enjoy Christmas in some way.

Thank you everyone. She is doing brilliant, can move her legs a little but is going to need to learn to walk again we think. She remembers nothing from 7th November but have been told this may start to come back and distress her.

The main issue we have is she is so traumatised, it's like ptsd or maybe relating to the physchosis? But personally I think it is down to all she went through. She doesn't want to engage with anyone medical and gets extremely upset if you mention it. Which caused a major problem on Wednesday. We made the community nurse aware that she didn't want to see the consultant or herself and would be very upset. The nurse basically said if you don't take her to the hospital I will phone social services as a matter of urgency because you are preventing her having medical attention. So we took her up breaking her heart the nurse took us into a room where pennylane screamed and hid her face. My husband struggled to keep his cool and the nurse just kept stoney faced and said the consultant and herself need to examine her today. The consultant came to the door and immediately said take her home she can not be upset like this.

This has completely thrown poor pennylane. This and we are back to everyone now denying that this is down to covid. They can't tell us what it is but it's not covid? Bloody coincidence she was never unwell before, never needed antibiotics. I think the only option we have after christmas is to save to go private if nobody will refer us to the long covid clinic. Either that or move to England because I've lost all faith in the NHS in Wales. Our experience in Bristol was completely different.

Gosh what an amazingly strong family you are. I hope she keeps on feeling better x

Sorry to hear you are still having problems. I am not medical but I think what she may have is guilliane barre which can be caused by covid and can leave you unable to walk unless this has been ruled out. www.nhs.uk/conditions/guillain-barre-syndrome/ I am not sure the long covid route will get much support in England either tbh, I am there with stage 3 cancer and had to go via complaints system to get treatment without big delays. I think neurology may be way to go, maybe pay for a private neurologist appointment, maybe able to get a virtual one, will be about 250 and you really should not have to go private and see what they say. Physio may help her too but dont know if it needs neuro input. If it is Guilliane Barre there is a TV series on Hayu called Below Deck and one of the girls working on the rich people boat holidays had Guilliane Barre for 4 months, think she was left unable to walk but made a full recovery, might give her some hope. Think its one of the later ones, maybe series 7 but guessing, I think it was Izzie but not sure. Lovely girl and you can see her now in full health. Could be wrong but worth checking esp if not being given any alternatives. Also I would just let them call social services, they will see you are an amazing Mum and see how she has been let down and you have nothing to fear from them though its terrible was used as a threat not a support option.

Yes its Izzy thefamousinfo.com/isabelle-izzy-wouters/ and here says she is in series 8 of Below Deck and another article says she was paralysed by Guillian Barre.

In regards to the social services referral I said to the nurse what exactly would the referral say. Would it say we have a traumatised child who has been through so much and has been left terrified of hospitals and hcp. She's hasn't even been awake a week and her parent's feel she needs a little bit of time to process everything. Or would it say parents are uncooperative and restricting access to their child. Even though I'm the person who contacted the children's community nurse in the first place to get everything in place for pennylane.

I was on an emotional rollercoaster reading your thread this morning, I could literally feel your anguish and panic as her health deteriorated. I cried tears of relief when I saw the picture of your beautiful daughter, pale but smiling. Sending you love, strength and very best wishes this Christmas.