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?

Thanks everyone. Quick update yes I agree she should have been seen so much earlier. I had previously taken her twice to the hospital, to the gp, phoned 111 and spoken with I don't know how many gps at our surgery. I even had to pester for the initial shakes she was given from the dr.
So now she has been is hospital since Wednesday (I have swapped with my husband until tomorrow because by fuck I needed it). She has had blood tests which came back clear for anything sinister that covid may have been a red herring for. But she's on daily tests to check for refeeding syndrome. She has a refeeding plan and is given the choice regarding whether she drinks the feed or has it down the tube. Which is bloody torturous because there is no talking to her. She is coming up with every excuse going to not have the feed honestly like trying to reason with a toddler. They have told me this is because she dry? The physiotherapist is back tomorrow because she still can't stand nevermind walk.
But the most worrying part now is that they have referred her to cahms? Because they think she is now verging on an eating disorder. I just can't understand how it's got to this it's been exactly a month today since she first was unwell. Before this she was so healthy she is 11 and has never had antibiotics she just never gets anything.

Anyway thank you all I really appreciate all the good thoughts. I don't have any friends in rl and it's never bothered me until now when I could do with someone to talk to

I’m so sorry to hear about your daughter. You all must be going through a really tough time. Please keep us updated. Sending you all lots of love and hugs x

Hope your Daughter starts to feel better soon OP.
Kindest thoughts x

Sending huge hugs and love hope she is better soon xxxxx

Sending love and hoping that she starts to pick up very soon xx

God that still sounds like an utter nightmare. I’m so sorry. Have just looked up refeeding syndrome.

I will keep holding out hope that soon you get a slightly better day, and can see some light at the end of the tunnel.

So sorry your DD and you are going through this, she really should have been put on a drip much earlier than she was. But at least her bloods are OK.

When I was in hospital like your DD I could not eat anything either and even the volvic with strawberry drink plus the drip made me sick. I felt too weak to eat anything and knew it would make me sick. The drip made me a little stronger. I was sent home still very ill unable to walk or eat but I was a little stronger from the drip and my husband has been here 24/7 to help. It has now been 5 days and I can walk a few metres, eat a little, drink, have slept for first time in a week and I am still very weak but seeing progress. I had to stop the antibiotics as my body could not cope with them. The first day I just drank and was still sick but second day I could tolerate drink - I drank elderflower cordial but any drink with sugar, maybe normal Ribena for a child if she likes that or a favourite drink. The next day I tried to add crisps it made me sick but by the third day my body could tolerate them and starting to eat a little again made my body remember to ask for food so even when sick it helped a bit. The first day I had rice - uncle bens with veg - couldn't tolerate it, second day I could so ate it, third day I couldn't face it as that isn't that nice but I fancied the vegetables (carrots and long brocolli) and roast potatoes we have with gravy for Sunday dinner (no meat or yorkshire) so I ate that and I could eat it. So I ate that again the second day in a row as I know it is safe and today I also tried some sweets (Miam chews) and was fine so now I am up to drinks with sugar in, 1 meal of veg and roast potatoes and gravy and some Miam sweets. I was sent home on Wednesday.

Obviously consult a doctor and take their advice but the issues I had were not like an eating disorder it was more like after you have had really bad food poisoning and you are too weak and scared to eat and need to start very gradually. Food / drink from home may be more appealing than hospital food if you are allowed to use that. I also found it best to let my body guide me and eat what I felt a desire to eat but that does not come back until a few days.

The ED referral would leave, think its probably long covid, but would take all the help you can get atm. I hope she starts to improve and you can also get some rest for yourself. If she has favourite food /drink and the doctors are OK with you taking it in and its not too sickly so savoury foods it may be worth trying that. I wouldn't push it, maybe ask her if she could have any food or drink at all what would it be. And for me it had to be very little of it until my body adjusted. But from that small amount you can build up a little each day. Do check with the doctor as I am just a patient but this is what helped me.

Hi, for you. You must be beside yourself.

I did quite a bit of reading about eating disorders a long time ago and there are studies that if you limit anyone's calories/food intake it can affect them this way. But if you increase the intake again it resolves because the reason for the problem was not psychological in the first place.

I'm no expert medically but you may be able to research that further.

How is your daughter doing and how are you coping IsThisAKissingBook? I have been thinking of you and hoping that things are improving.

Hi all. We are home with the hope that she will improve here but we are no better. We are waiting on an MRI and full body scan. She is on actasolve smoothie prescription x4 daily because she won't eat. Cannot move at all, her legs are all rigid. It's absolute hell on earth. Takes an hour to get her to drink a smoothie then we have to do tablet's and get her to drink water which she hates. Then she sleeps, then we wake her and it starts all over again. We are waiting to hear back from the paediatrician but right now it's either post viral fatigue leading to long covid or post viral (sp?) Mitosis. She may never fully recover. I just had no idea this could happen to someone so healthy. To top it all our experience in hospital was awful the discrimination I felt because we didn't speak welsh is shocking so I put in an official complaint.
Anyway thanks for checking in all

So sorry for what your daughter and you are going through. I had similar and now 7 weeks in, it is resolving so hopefully with time and eating and drinking more your DD will make a full recovery.

I would be very worried by the rigid legs, that's the one thing I didn't have. I was just to weak to stand / walk as could not keep any food or drink down. Its good she is getting a full body scan and MRI, I hope those will be quick for you. If she continues to deteriorate I would push for her to be back in hospital, maybe one with a children's unit.

I don't have any medical knowledge but I saw someone with this once and it can in rare cases be caused by covid and I think it can cause paralysis of the legs and makes it difficult to swallow, it may be worth asking the doctors if it could be something like this, hopefully its just post viral. www.nhs.uk/conditions/guillain-barre-syndrome

So sorry to hear how poorly your daughter is OP. I hope she recovers very soon.

Praying your DD recovers soon

This sounds awful. You must be worried sick. Will keep looking for your updates, hoping she will turn a corner soon. XxxX

This is insane! I can’t quite believe the lack of care & concern for your daughter?! They do sent her home still not eating & still not able to stand or walk? How is she going to the toilet? Or a shower etc?

Is your daughter giving a reason for not wanting to start to attempt to eat? Was it making her sick? I can understand that fear. I had severe Hyperemesis in my second pregnancy & I was terrified of eating. I was severely dehydrated & felt frankly like I was dying. Once the docs managed to control the vomiting and I could nibble sugary foods & drink some water again, I felt like a whole new person after a couple weeks of building back up my calories!

What is your daughter like when she’s awake? Is she not ‘with it’? Can you have a normal conversation if it doesn’t revolve around food? Does she not want to see her friends? Could some of her friends come to see her & give her an update on all the gossip? That might really perk her up & make her want to get better! When I had glandular fever as a teenager, I slept for hours a day initially but my friends kept my going. My mum spoke to their parents & invited them round for me. The gossip and laughter did me so much good! Do you have a class WhatsApp if Shes still primary? Or if secondary, does she have a phone?

I really hope things improve for her & you!

Hang in there. My 5 year old niece was in critical care with covid and her recovery has been incredible compared to older relatives with covid. Your DD has youth and health on her side and it’s a terrifying time but she will get better trust me.

OP if she is still no better then you need to get her seen in a large paediatric hospital with specialist knowledge of caring for more children with Covid, even if you have to drive to Bristol.

Go onto the Long Covid Kids FB page, there will be lots of people on there that may be able to advise on avenues/people to approach to get help and treatment centres for children near your area and also offer support/their experience.

Also read up on PANS/PANDAS as some children with Long Covid have been diagnosed with this and restrictive eating is one of the symptoms.

www.healthline.com/health/pandas-syndrome#causes

www.thelancet.com/journals/lanchi/article/PIIS2352-4642(21)00135-8/fulltext?fbclid=IwAR1TlEo2cno7qS6UROl0CcbM9LwENSAkzTjCvm-yTWtx3qmnNELsAqaXv2Q

Oh my goodness everyone thank you for all this advice. I'm definitely going to push now for her to be seen in a large hospital outside of wales. You honestly can't make it up what we went through. We have put in an official complaint. All that was being focused on was her having the drinks. We saw physiotherapy several times but the doctor said this is too early to diagnose long covid but it's probably post covid fatigue but she needs to have this MRI. He said who knows how long she will be like this.

In regards to how she is, she's sleeping we are waking her for her drinks which takes an hour a time easily. We are wheeling her to the downstairs wetroom and transferring her to a seat to be showered. We have to lift her because she just finds it too much. Also for a wee which she doesn't ask to go to we just take her. She can't sit up. She has no energy or desire to talk to anyone. She has periods where she is out of her mind and completely unreasonable where she's screaming at us and refusing the drinks. She's in constant pain and feels sick. Every mouthful of the drinks she gagging. She has all this extra saliva so has a spit bowl. She just wants to sleep.
I really just want her seen now and more answers. Very close to going down the private route.

I would phone 111 and try and get her seen in a hospital with childrens section and better at covid, she does not sound well enough to be at home like that. I did find the saliva thing goes after about a month using like cold and flu meds and hospitals are rammed here as well at the moment but she needs to be seen again. You could ask gp if there are any options for treatment at home like a drip at home but dont think that exists. Hope you can get her more help. I am not sure there is a private option for covid but you could phone and see. I would just keep on for help, you will probably get people be rude to you, I did, but you do find some who will help and sounds like she desperately needs help. I am sorry it is so difficult, it should not be.

Oh poor thing, that’d just awful. It literally sounds like my hyperemesis! I had excessive saliva, it was hideous. On top of the nausea, severe vomiting. Eating anything made me gag. I was really really poorly. I could barely stand up. I know I was pregnant & had an extra life onboard but they wouldn’t let me leave hospital until I could eat small meals without vomiting. That would literally be one bite of say a fish finger, a couple chips. But they’d offer me food multiple times a day. I was on a constant drip & high calorie shakes. I was in for 3 weeks initially, then had an open pass to go back anytime I needed. I was back in & out for months 😩 but at least I knew there was a happy ending!

I think you’ve just had a terrible experience. Can you travel to one in a bigger city where the hospital has a paediatric centre? You say you are in Pembrokeshire? That’s South Wales right, Tenby area?

Can you look at Swansea or Cardiff? More major towns? I appreciate that’s a big effort but I wouldn’t necessarily dismiss Wales in favour of England. I think you just need a bigger, child specialising hospital.

That sounds dreadful @IsThisAkissingBook.

I'm so sorry you're all going through this.

It's you who have used those words, @Bobholll. @PrincessNutNuts didn't say anything, only expressed concern and compassion, unlike you, who called the OPs dire situation a horror story. You're the only one forcing your agenda onto a thread about a suffering child. That's really out of order.

Op I'm so sorry you're going through this and appalled that the hospital have sent her home. Agree with others about finding another hospital who will listen and have more expertise.

Sorry, @Bobholll - I realise now you did post lots in support of the OP and I'm sorry for what you went through with hyperemesis etc. I was just a bit surprised about the attack on Princess, on this thread, but there was no need for me to weigh in, I'm sorry about that.

Op how is your daughter tonight? Thinking of you

She's going back to hospital tonight