Misdiagnoses and over-medication

[19jim40]

Daughter Sarah December2012 suffered respiratory collapse.It was assumed she suffered brain injury and was prescribed a range of meds to address diagnosed epileptic seizures.She was in induced comas for 4 months.On emerging in April 2013 she appeared physically strong ,was able to talk but intemittantly and eventually walked successfully and was able to manipulate keyboard and pen without tremors. By August 2013 she became subject to delusional episodes and was prescribed APDs. After over a year she experienced diagnosed epileptic seizures and AEDs were increased.She suffered further diagnosed epileptic seizures and AEDs were further increased so that she was rendered completely bedbound and extreme sedation prevented care and therapy take-up.After some scrutiny by the Court of Family Protection doctors came to the view that not only did she NOT suffer brain injury (several MRIs and EEGs showed a "normal" brain ) and was NOT epileptic therefore AEDs should be reduced and eliminated if possible.Unfortunately these positive and welcome opinions emerged only after over 5 years of heavy medication and resultant immobility.Throughout doctors have become reluctant to share information, perhaps from professional advice because of possible legal consequences.If not for Court involvement I think it would have been expedient for the experts to merely continue the punishing drug regime.August 2017 Sarah was prescribed 11 different drugs a day.She remains immobile,bed-bound and without speech.She has become reconciled to believing she will be a totally dependent patient for the rest of her life.

[lcd8]

So sorry to hear you have been on such a journey. If brain injury wasn't the cause of Sarah's seizures and respiratory collapse do they know what was yet?

[randomphantoms]

OMG what I feel reading your post is not something I could type.

If only you had found us earlier.

PLEASE talk with the headway helpline. I know that every brain injury is different but we seem to share some things in common.

I'm not sure if the site allows it but you could search for coma and see the posts and answers there. 4 months seems long.

My thoughts are with you both and there is always hope.

[Elenor3]

I wonder what the doctors think caused this? Someone I met had a rare brain infection. It took months for the diagnosis to be obtained, but he was treated for lots of other things first because the doctors didn't know what what's wrong with him. They treated him for TBI and all sorts of other things before they gave him an intiboitoc that stopped the infection. He's out of hospital now but still needs help with daily things. I hope your daughter recovers and gets a firm diagnosis.