Hi, my name is 12jules! I am just wondering if anybody has had similar symptoms?

12jules

I am just wondering if anyone has had similar symptoms or any advice. My daughter is 14 years old and has been in hospital for 10 weeks on this admission and in a week before this one. It all started with just abdominal pain on her righthand side. We came into hospital with just that and after a week in here she collapsed and has since collapsed twice more in here. For 48 hours she couldnt move, talk, open her eyes or even squeeze our hands. After 48 hours she started to come round slowly by first opening her eyes and able to squeeze our hands. She would open her mouth but no noise came out when she tried to talk and she would just end up in tears. Slowly she regained her speech but still stutters all the time when she didn't before her collapse. She could move her arms but could not move her legs at all and could eventually sit on her own. A week ago she had a busy day of being moved from bed to wheelchair to toilet spent along time in the wheelchair. They bumped her up around the ward trying to get her to join in and also she had a shower.  That night she was in alot of pain and woke up in the morning like above but has had to have the hoist, wheelchair and able to sit out of bed taken away as this time she can not sit unaided and has no head control at all on top of not being able to use her legs etc. To me it seems to follow a pattern of her being moved, her right hand side bloats followed by huge pain followed by a back step in what shes able to do after a sleep. The doctors are saying thats not possible even though the nurses have noticed it too. My daughter is a fun loving life child who dances 3 days week for fun has lots of friends in dance and at school. I can say this as I've checked it all out and also checked her phone on numerous occasions. Infact she must have very good friends as 5 have been in to visit we live over an hour from the hospital and people are texting all the time even though she hasn't been texting back. The hospital we are at are saying she just has to get better and that she will because they cant find any reason for her pain. They keep quizzing my daughter about her life even though I've checked it all out. She's being given physio 1 hour a day monday to Friday so we have just had 4 days of no physio being bank holiday. Shes seen two psychologists the first one said she has no anxiety or depression so they brought another one in and she has said the same. We've asked to move hospitals numerous times as 10 weeks in we have a daughter so much worse than we walked in with. I'm at a lose end of what to think of it all and im very upset at how the hospital are treating my daughter with some even saying its in her head, telling me to leave things away from her she will get it if she wants it even though she cant move her legs. I went home on their orders told they would take good care of her so I could go home for a few hours to see my son. It was a disaster they left her in the wheelchair for hours with sun in her eyes, no laptop or TV on and no buzzer to ask for help. what upsets me the most they left her with her head on her chest they didn't support her head at all. Sorry its a long message. Have any of you experienced any of these symptoms above. Thank you if you have read all of the above 

12jules

Hi thank you so much for your reply. A doctor today suggested I find a forum and put it out there to see what comes back from it. 
We have now after asking for many weeks got a named consultant but he doesnt work on the wards so we just get random doctors that report back to him. The main consultant just says it will get better with time. They have seen it many times before where as the nurses here say they have never seen it before and are learning as they go. To the point everyone hasn't used a hoist since their training for some that was years ago. They cannot remove a bed pan without slopping the contents all over my daughter. The nurses are lovely just not had experience with what ever it is. The consultant has put 1 hour a day physio in to help with getting her back to herself but we are seeing no improvement. I know from here I cannot get medical answers but thought it was worth a go to see if anyone else is /has go e through after to my surprise the doctor today suggested it.

emancherry33

Hi @12jules so very sad to hear about your daughter, I think you have come to the right place for help. I had a lot of problems when my mum went into hospital for a long time. Some of what is happening to your daughter reminds me of what happened to my mum. For my mum she was given high amounts of various drugs that where ment to help her but did not.and they kept upping the drug dosage weekly she became a unresponsive, eating and drinking became impossible and as my mum could not move she could not eat or drink. The nurses used to leave the food/ drink Infront of my mum then take it a way 30 minutes later as the nurses told me well if she was hungry or thristy she would be able to get up and have it.the family came in 3 times a day to feed her and give her drinks. We complained to nurses and got no where ,we got pals at the hospital involved and got a feeder arranged
Eventually through pals managed to get the pills reduced she improved but had to keep up reminding them we weren't happy. It does not supprise me the lack of care your daughter is getting went through the same thing with my mum in end it was family and friends that came in daily to look after my mum.oh don't get angry with the doctors or nurses they tend to turn off.  Keep asking the questions , if it's not the meds is it a neurological, what's her latest levels, bloods/ urine Tests , toxification levels, good luck , keep you head up and stay strong for your daughter give her a big hug from me

Ross_Alumni

Hello @12jules and welcome to the community, sorry to hear of what you are going through with your daughter, it sounds like a really difficult situation and it seems as though it is understandably causing you quite a bit of worry.

I have moved your thread over to our children, parents and families section which you might find it helpful to browse for any related threads

This is a very supportive and welcoming site to be a part of so I’m hopeful that you’ll find it to be a positive outlet. Feel free to have a look around and get involved wherever you’d like 😊 I have included below a few of the pages I’d recommend having a look through to get used to things:

• The virtual coffee lounge which is one of our categories, in which we play games and talk about general subjects such as hobbies and interests
• The recent discussions page, which shows an overview of everything happening across the community
• The categories page, which shows a full list of discussion groups on the community

If you have any questions at all then don’t hesitate to ask.