Who can help my daughter

[Kezzabella1984]

Hello all.

My daughter was diagnosed NEAD in 2019 and then discharged.

since then her symptoms has gotten worse (no feeling in legs, unable to walk, tics, list goes on) we have pretty much been dismissed and I just have to get her moving.

This causes great distress.

Does anyone know where I could possibly turn to for help seeing as we are under no one.

I live in East sussex

Thank you

[WorriedPappa]

My daughter has FND and Autism and we have been trying to get her the help she needs for years. FND over recent months has now meant she can't walk. Like you it just gets dismissed as a mental illness. Ideally need a referral to a FND clinic but the waiting list is massive. My daughter is under CAMHS who have been average at best. We are going through assessments with a company called Primary Wellbeing Care Services. These seem to have lots of professionals that can hopefully help, but like everything it's taking ages. The whole system in the UK is broke. NHS are great for normal physical illness and critical illness but anything like this then you just have to keep pushing until you get in front of the right person. It really shouldn't be like this. When you have had a diagnosis there should be a clear route. Good luck.

[Kezzabella1984 in reply to WorriedPappa]

Thank you so much and I'm sorry you are going through this as well.Good luck to you to.

[WorriedPappa in reply to Kezzabella1984]

neurosymptoms.org/ also have a read of this if you have not seen it. It gives good explanations.

[Lucielupin]

Hi there i am part of fnd friends based in south west england, look us up on google we can help you 😁

[Kezzabella1984 in reply to Lucielupin]

Thank you I will look you up now

[Jofisher]

Call great ormond street hospital ask them if they have a functional neurological disorder (movement) specialist at the hospital or do a search on line for a paediatric specialist for functional neurological disorder and see if anyone comes up. Professor Mark Edwards is a specialist for adults at St. George’s they may also know someone as they would have children moving to them once they reach adulthood. Good luck

[Kezzabella1984 in reply to Jofisher]

Thank you

[Lorinda1]

On the west coast, FND programs are available at Stanford and the Mayo Clinic. I may go to in patient at the Mayo Clinic. I live in Ca.

[Keeponfighting]

I have done a 6 weeks rehabilitation treatment in patient at the University College London with the Neuropsychiatric team. While at the hospital, I received support from physiotherapist as I had difficult walking, speach therapist I lost my speach then I stuttered, CBT, Ocupational therapy. It was a hard experience but after my admission my speach improved, I’ve learned to understand and to manage FND symptoms and I’ve at work full time coming up to a year. I thank God. So you could ask the GP to transfer your daughter to the neurologist team at that hospital if she is over 16 and perhaps she would also get a chance to join the treatment. All the best.