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 think that is the best place for your DD at the moment so glad you got her back in and hope they can help more this time and get her back on her feet.

@IsThisAkissingBook

She's going back to hospital tonight

I am sorry to hear you're no further forward, but I'm glad they're taking her back in. It seems like the best place to get help.

I hope they get to the bottom of it and help her very soon.

All the best. We're thinking of you.

Sorry to hear about your situation. I hope you can be referred to the right clinician. I don't know if you have come across this website before but it might help you to access more support. www.yourcovidrecovery.nhs.uk/

I hope your daughter recovers soon. X

I’m glad to hear she’s being readmitted op. The situation you’ve described doesn’t sound sustainable at home.
Where is she going this time? The Children’s hospital for Wales at UHW is really excellent and if you’re there you can ask to have accommodation for you / DH at the Ronald McDonald house which is literally across the road.

So sorry you are going through this, it must be so hard for you to watch
I will wish you the very best, I really hope you get some support in hospital.

That's good she's going back in. Really hope she gets the help she needs now. Thinking of you

Just read all your messages OP. I'm so sorry you're going through this. I hope you manage to get seen at better hospital and your daughter gets the help she needs. I can't imagine the stress you are going through.

She is still sleeping. We are luckily in a side room this time. The plan as far as I'm aware is to fit an ng and show us how to use it. She has the doctors coming to see her and get her this MRI urgently. They have also requested she gets assessed by a psychiatrist today. She is completely out of her mind it's like she has regressed so much. Thank you everyone for your advice and support. I definitely went in there more prepared because of it. Just seems they are so reluctant to address it as being a covid complication.

That's good she has a room, it is so much nicer and good they are doing MRI quickly. I would have thought it was a covid complication as it started when she had covid though would just take any help they offer. I think its very normal to be scared of eating though when you know it will make you very ill though she does need to eat and drink a bit to get better even if it makes her ill at first, I had to do that and now 2 weeks later I am better. I hope the tube feeding isn't too horrible, I just had a drip and that was fine though still made me sick. But also made me stronger. I hope she starts to improve soon.

Unless they have ruled out all medical causes and completed all medical assessments to decide that she is medically fit it is inappropriate to complete a psychiatric assessment. CAMHS normally expect someone to be medically fit before seeing them. They should cover all medical bases first.

@Choconuttolata

Unless they have ruled out all medical causes and completed all medical assessments to decide that she is medically fit it is inappropriate to complete a psychiatric assessment. CAMHS normally expect someone to be medically fit before seeing them. They should cover all medical bases first.

100% agree with this.

Why are they reluctant to address it as a covid complication? This all started when she had covid. Could you ask them why they won't consider this or seek the expertise of doctors dealing with long covid?

I really hope she gets some better help, the side room sounds good. Really hoping things improve for you all soon.

Ok so this couldn't get any worse. The tube didn't go well at all. Luckily they made allowances and have let dh be here all day. But they aren't allowed to hold her so we did our best to restrain her but she so hysterical poor thing. So they are now saying they want to (this is no word of a lie) section her tomorrow so that they can restrain her and force the tube in. She is ELEVEN! the MRI has come back clear, from everything we have read online this is clearly down to covid. We syringe fed her water and the drinks all day today just to try to overrule this tomorrow. A lady from cahms (sp?) rang us and she said this didn't sound like a mental health problem more a medical issue. But the doctors here (again you couldn't this shit up) bypassed and went straight to mental health doctors. So a psychiatrist is coming tomorrow. I desperately wanted to take her home tonight. But husband is coming back in the morning first thing but I just don't know what to do.

Jesus Christ, I'm so sorry. I'm sure more knowledgeable posters will be on but my gut instinct would be NOT to let her be sectioned no matter what. It's like they're trying to punish her?! The trauma from having the tube forced down against her will surely isn't going to make anything better?

Have you managed to make contact with anyone from long covid kids?

That sounds horrendous, your poor DD. I'm not medical so you need to check but I wonder if they could use a drip instead, that is what I had and it was enough to help me to drink then eat a little then eat more. I would be tempted to take her to a different hospital. Maybe call 111 and see if you can talk to a doctor if you can't get anywhere with hospital doctors. If maybe worth asking GP if you can get through to them quickly a hospital they recommend though would go with a bigger one with a children's department.

I certainly had very similar symptoms with covid / long covid and I could hear another patient also in covid A&E saying he had similar when he was ill with covid / long covid. The only difference was my legs weren't heavy and it would not have taken me an hour to eat something, I could eat normal speed but it went right through me and made me feel so ill and I was so weak I didn't want to eat as I knew I would be ill and I wasn't well enough to walk to toilet. Its probably worth asking her if it hurts to eat or difficult to eat or whether she is just scared to eat. I think being scared to eat when you know it will make you very sick is normal though to get better you need to eat small amounts then increase and at first you will be ill until you body heals.

I've just had a quick google and I can't find anything that suggests sectioning is appropriate in this situation. Everywhere says it should only be used to treat child mental health conditions. I think it's far from established that this is that.

I would be worried about losing parental responsibility and also her being sent down the 'this is a mental health problem only, nothing to do with covid' route. Ask for second opinions.

I hope someone else with more knowledge comes on to help.

And in the meantime ask why they are suggesting causing extra trauma rather than using a drip.

Tell them you would like a second opinion from a paediatric consultant at a large paediatric centre that has been caring for very unwell children with Covid before they decide that this is a solely mental health issue, they could be missing something more even with the MRI being clear.

This document talks through some of the issues around feeding against consent (in the context of eating disorders). If you as the parent consent to the feeding tube, then I do not see why they would need a section if the treatment is medically necessary. The paediatric ward staff are not restraint trained generally anyway, so I do not see how a section will change that unless they are going to bring in special restraint trained staff for the purpose of placing the tube or admit her to a specialist area where staff are restraint trained.

They need to be clear about what this will achieve because feeding tubes often get pulled out or come out and need placing again. If she is taking syringed water and feed then that may be less traumatic for her than being restrained for a tube. On the other hand some young people find the tube easier as they are not actively involved in the feeding process in the same way. If she will engage in the consent process it will be easier, but it sounds like she is not able to make a rational decision right now (the lack of fluid and nutrition will not be helping this as it impacts on brain chemistry) and she must be very scared by what is happening.

The psychiatrist and the paediatrician need to have a conversation with you and her Dad about what the options and next steps are.

ashfordstpeters.net/Guidelines_Paediatrics/Feeding%2520Against%2520Consent%2520Dec%25202019.pdf&ved=2ahUKEwj68qqG2P_zAhWmgP0HHTpIApwQFnoECDMQAQ&usg=AOvVaw2GYfd6OgX-RdAAwopaz8nk

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=ashfordstpeters.net/Guidelines_Paediatrics/Feeding%2520Against%2520Consent%2520Dec%25202019.pdf&ved=2ahUKEwj68qqG2P_zAhWmgP0HHTpIApwQFnoECDMQAQ&usg=AOvVaw2GYfd6OgX-RdAAwopaz8nk" rel="nofollow" target="_blank">www.google.com/url?sa=t&source=web&rct=j&url=ashfordstpeters.net/Guidelines_Paediatrics/Feeding%2520Against%2520Consent%2520Dec%25202019.pdf&ved=2ahUKEwj68qqG2P_zAhWmgP0HHTpIApwQFnoECDMQAQ&usg=AOvVaw2GYfd6OgX-RdAAwopaz8nk

Sorry link didn't work

Thinking of you and your daughter OP and hope you have had a restful night.

Still thinking of you OP. I hope things are improving for you all.

I'm so sorry you are going through this. It sounds terrible. Your poor daughter. I'm thinking of you and hoping she turns a corner soon. Xx

Have you gone back to the same hospital OP? Or did you try another one? It sounds awful 😔 My 18 month old had to have an NG tube in summer & I had to leave the room as I couldn’t bear hearing her screaming & gagging. It was horrendous. It must be 100x worse age 11 & having more understanding. My DD also ripped hers out 3 hours later so that was a massive waste of traumatising her.

Do you have photos & videos of your DD prior to covid OP? Preferably from not so long ago that show her as a happy, active 11 year old? Because why would she go from that to needing sectioning in the space of a few weeks? If all that happened is she caught covid. What could possible have made her from happy to extremely depressed?!

Quick update will do a more detailed update soon as I can. But we took her home yesterday. They attempted the tube once which they put into her lungs. We asked for something to relax her that's when they wanted to section her. Cahms as an emergency came down and we explained everything that had happened at the hospital. They could see the only mental health issues she was experiencing was being traumatised from her treatment. They said the noises she is making are tics. Which are common in children with long covid. They said she can leave. We are syringe feeding her which we started at the hospital ourselves. Which she hates and it takes a long time to feed a drink which is 200mlx4 daily and 600ml water all via 10ml syringe because that's the most she will take at a time.

The only person who has listened is the dietician (she's a doctor). She is the only person who looked into long covid in children and agreed that this is clearly what this is heading towards. She also told us that the hospital have a bloody long covid clinic which will take children. The ward told us we would have to go private. She has sent an urgent email across. Anyway there's so much more detail to the last 3 days I will update more detailed.
Honestly this reads like I'm making it up it's so unbelievable. I'm on instagram if anyone is disbelieving because honestly it all sounds so far fetched. I feel like this isn't real but good grief it is dreadful.

God OP that is absolutely awful. Extra trauma being heaped on your poor DD and you just because they won't refer to the long covid clinic. What is wrong with them? I'm so glad at least one doctor was supportive and sensible

I cannot believe they told you you'd have to go private - who said that? I hope you have their name because that is absolutely unacceptable when there's a long covid clinic in the same hospital! What if you can't afford that? What then for your DD?

Do you have any friends or family members who you could get to start a complaint to PALS on your behalf? Clearly you need to focus on your DD but the appalling treatment she's suffered at their hands needs to be recorded and put right.

I hope you manage to connect with someone with more experience in treating long covid kids who can help you to get appropriate treatment.

I hope things start to get better for your DD soon.