NMS – Neuroleptic Malignent Syndrome

This is a rare life threatening effect of being on anti-psychotics like Clozapine.   Elizabeth has complained to myself and my carers of feelings of burning up and she told one of my carers that her tongue “locked” in a position  at the back of her throat temporarily – she lost control of her tongue stuck in an awkward position –  please can you all pray for my daughter Elizabeth right now.   I am  at Maidstone Hospital in Kent.   I am looking for a specialist centre to pay privately so that Elizabeth can recover and have intensive trauma therapy and then come  home as soon as possible.  I want to move from my area to an area where the professionals are kind and where you are not constantly taken to court, an area where they have open dialogue.   I  am going to sit here all night and wait in this hospital –  I have gone to huge lengths to find a facility  and they have a bed for Elizabeth – only six people – a small place and I am prepared to pay for this.  However I do not know if Elizabeth will be released tonight – she may need a few weeks in such a specialist private facility –  at least they won’t take a phone away and treat her like rubbish.  I would give my house to pay for the correct treatment as Elizabeth means so much to me . In my local area the staff have been extremely nasty behind our backs –  all they care about is compliance  – not about physical health and no notice is taken as regards physical health.  We only say the psychiatrist in December 2015 and yet Elizabeth has been home since May 2014 and after all that happened it is no wonder she did not want to see them as they behaved like bullies.    I thought I saw a brilliant facility here in Kent –  a beautiful farm in a lovely area –  wonderful facilities and kind staff that could really help Elizabeth and I thought this was the right place for Elizabeth to get well.  Prior to arriving in Kent  I had been up with Elizabeth several nights as she has a nasty cough and this was making her choke to the point of being ill.  I slept one night with her and our cat fluffy has been so loyal –  he has been sleeping at the end of her bed each night.  He has been following Elizabeth around –  Elizabeth said “you don’t know how it feels”.  Sure enough –  I have not been on such chemicals let alone sectioned or forced to take drugs when proper therapy is really needed but no way should Elizabeth be put back on clozapine at 350mg –  several doctors have agreed with me –  Elizabeth has managed wonderfully on a tiny dosage and we have not had one bit of trouble in two years –  two years of not having any professional help whatsoever –  I expect Elizabeth is tired now and possibly asleep.  We have been waiting around practically all day and I was gutted that Hay Farm would not take her –  I so wanted a natural environment not a hospital ward –  I so wanted her to have the kind of specialist help that only someone who has gone through PTSD could offer.   Intensive trauma therapy is what she should have been given but unfortunately my local area have given only a care plan giving nothing as having read what has been said behind our backs how can you trust those who have tried to sever contact,  spent thousands on costly court action,  caused a divide in the family but this divide has closed due to seeing her thoroughly improve upon coming home after two happy and joyous years where Elizabeth was able to join in all family occasions and be with the people who really care – her family.  I wish to move with all my heart but at least in Kent they have Open Dialogue.  I wish we had this in my local area.  Anyway I am going to stay close to Elizabeth all night –  I am not leaving Maidstone Hospital. Have to wait here until 10 pm another hour to be seen and I want to pay for the right care not all about drugs and get this care immediately.


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