I am not entirely sure what to say other than our daughter was diagnosed with FND/NEAD. She has around 10/15 seizures a day, and that is on a good day. She loses the feeling in her legs and has some memory loss. She is now being home schooled and has only left the house a couple of times and that is for hospital appointments. I just can’t see the light at the end of the tunnel. I know its selfish to think that way and I get so angry at myself for being frustrated with her. Its such a roller coaster of emotions all the time. On a good day she will get up and do things around the house but at times like now where she hasn’t been able to use her legs for over a week, I just struggle with it all. She is sick all the time, my whole house smells of vomit. She got diagnosed in December so I know its early days, but I am hoping someone can give me some advise as to how to help her work through this.
Good morning, I would suggest you look at the fndhope.org website and support groups. It would be helpful to see a neurologist with a good understanding and interest in fnd.
Fndhope has regional support groups and have launched a virtual monthly group online.
They do have a Facebook page too.
Are you aware of NHS Continuing Healthcare?
Hello and welcome!
Have you had a needs assessment or not?
Some helpful links, Sunnydisposition. Thanks!
One of my carees has this but there was so little information and support provided, just told the fits are not epilepsy and that’s about it, left with no help.
But yes has good days and bad days, some days can barely get out of bed, sometimes can go out with help and support.
The social Services and NHS have done so little to help, don’t understand, never heard of it.
The recommended treatment is specialist cognative behavioural therapy CBT.
The hospital or the GP should be arranging therapy for your daughter and help and support for you.
Thank you too, londonbound. I had a diagnosis of Parkinsonism for 23+ years. Then, Guys and St Thomas hospital specialists now believe it’s a functional neurological disorder! CBT is often used as is specialist physiotherapy.
I do not have any seizures, thankfully.
There is a clinical trial, Physio4fnd, that is currently recruiting for the trial. Well worth inquiring about it. I’m enrolled but no treatment yet…
Trial website: physio4fmd.org