Daughter- locked in syndrome

[Bricksandmore]

My daughter went into hospital last week following a fall and slurred speech.
she’s been diagnosed with damage to the pons in her brain. She’s on a ventilator and paralysed (LIS) her only form of communication is blinking.
I don’t know how to help her, I don’t know what to say to her. I don’t know even what I’m asking?
She has young children.

Yes she can hear me and understands me. She relayed to me through blinking that she was in pain. I told her nurse and she gave her pain meds.

Sorry this is happening to your daughter- sending virtual hugs . The fact she can communicate is huge even only via blinking . Wishing you and your family all the best .

I am so so sorry OP. Do let people help you. Sending you and your daughter so much strength and love. 💐

Oh how awful. Your poor daughter - and I'm so sorry for you, too, having to see her like that. You must be desperately worried.

Ohh op what a heartbreaking situation for you all. I'm sorry I can't give any advice on her situation but just thought of a few things that might be nice to try which I did for my MIL when she had a stroke and was in ICU last year that she really liked.

• downloading Spotify playlists & audiobooks she would like that nurses can play while you're not there.
• make up remover flannels (a lot softer than normal flannels) to soak in warm or cold water and have rest on her head of wipe her with to feel freshened up or if she has headaches.
• paint/file her nails if that's the sort of thing she'd normally like. You could take a few colours and she can blink for the one she wants.
• I don't know if your daughter has bruising on her hands but I massaged my MIL hands with arnica cream to help, but normal hand cream would work. She couldn't even open her eyes or speak but as soon as she heard me in the room she'd lift her hand up for me to rub them as they were really sore and rubbing them helped.

The only other thing you can do is just be there and advocate HARD for her, if you don't think something is right or the staff aren't listening then keep pushing and asking for what she needs. someone will listen, sadly it just sometimes takes you asking too many times. Also look after yourself, make sure you're eating and drinking plenty of water & take all the help you can. Your friends sound lovely & im sure they won't mind at all you staying with them. Wishing your daughter a full recovery xx

Oh sensing hugs.

Ask the Dr if referral to speech therapy might be helpful to her. It might be too soon if she is getting to fatigued and to difficult with tubes. Amazing that you have got a way of communicating. If its reliable think about making a list of written questions that ppl can ask her ( most important at top) so she knows that the thing she wants will be asked. Nothing worse than a nurse playing 20 questions when effort and energy I'm precious.
If blinking becomes eaiser and still needed a speech therapist will be able to find other technologies to help communicating but I'm sensing that this is not the right time for this and also if things stabilise the hope will be she gets back function again.
As someone said above its soo hard because every brain is different I've seen ppl bounce back to normal function and also people who have been on a very long recovery ( and all in between) . Being with her and talking, brining books to read to her or music.

oh my darling, i thought i was having it rough.

please look after yourself as your daughter would want you to i’m sure.

this all sounds awful. have the hospital said anything along the lines of liverpool pathway?
i can’t imagine what you are going through right now.

Heartbreaking. I'm so very sorry.

Goodness that's awful, I'm so sorry. Thoughts are with you.

I am so sorry. I haven't experienced the same but our son when he was 15 went into a coma like state for 8 months when he couldn't walk, talk, write, eat, drink, move called catatonia. He's now been home just over a year and he can walk, eat and drink but still can't communicate or interact at all.

His wasn't a brain injury but one technique I tried that helped him was based on the 5 senses - for smell used lavender and rose, this helped the most, music for sound (didn't seem to do much), touch things like velvet or fleece (seemed to help), sight (lights and decorations which seemed to help) and did different foods though had to help him eat. We had to prompt him with walking and say things like right foot on ground and support him at first, now he can walk unaided. Also get any benefits she may be entitled to as recovery may be long, things like PIP and ESA, will depend on circumstances but claims can take a long time to go through ( 6 months or so), for him we are his appointee so we can handle it for him, the hospital wrote a letter to say he needed one. And take time to look after yourself. With what my son has they believe he can hear and understand so you being there will help her know you love her and are there for her.

Our son is still a long way from communication but people have said about this
https://www.asha.org/public/speech/disorders/AAc/ I think often the best support is private but if you claim the benefits hopefully will help finance it.

If she's awake enough, maybe speech and language could help with communication using eye gaze.

Wishing her a good recovery. In a similar, but different, situation I found having a routine of things to do helped, eg wash face, mouth care, massage hands, play music, as it helped me cope as much as trying to help my relative.

Bless you my dear.
I pray you find strength and support from those around you.

Have faith. (These two words were uttered to me in my darkest hour and it helped me.)
Love...

@penguinsa - I really feel for you. What caused this in your son?

I am so sorry, you sound like a great mum, keeping everything crossed for your daughter.

I'm so sorry
I have nothing practical to add, but I just want to add my kind thoughts to you and your daughter. I shall think of you both tonight and hope she starts to recover. ♥️♥️♥️

Sending so much love to you and your daughter and kids OP

Thanks *MounjaroUser *

Camhs gave him a medication by force against our will and his will which went very, very wrong. Schizophrenia drug, he just had anxiety but is asd and asd its very dangerous to give these meds. I warned them but they didn't listen. And of course they won't admit what they did in writing. A second hospital called in after 6 months told us the truth but only verbally. We knew it as we saw it ourselves.

So very sorry OP - what an awful thing to happen. There's some good advice on here. Do use this thread for support if it helps - Mumsnetters can be a mine of information and support - even in the early hours.

Sending you all good thoughts

Just sending every best wish and prayers for you and your daughter, do look after yourself too.

If you can cope with reading at this time, The Diving Bell and the Butterfly was written by a man with LIS and may help convey what your daughter may be feeling/ideas re ways to communicate. I hope she recovers soon

@Penguinsa That's horrific. I'm so sorry.

I'm so sorry.

Have they done a lumber puncture? Worth checking - have they ruled our Guillain-barre syndrome?

My husband had it. It's pretty rare and not something Doctors always think to check for. The illness caused him to have falls. He became paralysed. It all happened incredibly quickly. It can cause LIS and there's a link with sodium levels in the brain.

It's worth asking/googling it, if its not been discussed so far xx

Agree it's a good idea to get information and support from this charity. Thinking of you and your family 💐

Yes she’s had two lumbar puncture’s, they originally thought it was Gillian’s barré syndrome. I think they’ve ruled that out and believe she has CPD central pons demyelination. I know I need to ask more questions and try to take in more information. I’m so tired, it’s all been such a shock.
I appreciate all your kind messages and useful ideas on how to make my daughter more comfortable, thank you.
And I’m so sorry that some of you have been through and are still dealing with similar illnesses. Thank you for sharing.