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Original poster

Daughter- locked in syndrome

105 replies

Bricksandmore · 18/08/2024 11:32

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.

OP posts:
Original poster
Bricksandmore · 23/08/2024 08:05

ChocolateBiscuitsandaCuppa · 23/08/2024 07:52

Firstly I am so, so sorry.

This is usually caused by a low sodium level being corrected too quickly, not the low sodium level itself. Ask the ITU team specifically about that.

I've had two patients with central pontine demyelination secondary to correcting a low sodium level too quickly. It took months, but they recovered. It won't be true for everyone, but don't lose hope.

Wishing you and your daughter the best.

I have only managed to speak to the doctor once, when he told us the diagnosis. He said that she had received the correct care and that it wasn’t anything to do with the treatment that she had received.
we live a distance away and was only informed of how poorly she was when she transferred to ICU (day 5) By day 6 she was on a ventilator.
Thank you for giving us hope, we are still so very worried about her.

OP posts:
MrsOvertonsWindow · 23/08/2024 08:41

Sending you all good wishes OP. I hope that you and your family are being well supported. As this thread evidences, Mumsnetters can be a good source of support and information if you find that helpful. Flowers

Original poster
Bricksandmore · 23/08/2024 10:09

MrsOvertonsWindow · 23/08/2024 08:41

Sending you all good wishes OP. I hope that you and your family are being well supported. As this thread evidences, Mumsnetters can be a good source of support and information if you find that helpful. Flowers

Yes everyone has been wonderfully supportive.
Thank you all so much x

OP posts:

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Calliopespa · 23/08/2024 12:56

Bricksandmore · 23/08/2024 08:05

I have only managed to speak to the doctor once, when he told us the diagnosis. He said that she had received the correct care and that it wasn’t anything to do with the treatment that she had received.
we live a distance away and was only informed of how poorly she was when she transferred to ICU (day 5) By day 6 she was on a ventilator.
Thank you for giving us hope, we are still so very worried about her.

Show quote history

I have no real medical contributions to make op, but I am a mum and send again strength, sympathy and above all hope.

Sheelanogig · 23/08/2024 16:48

I know you've better things to do than update, but have been thinking about you and your family.

From what I have seen, it's a very slow process to recovery but never give up hope.

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