V is a 10 year old girl who has experienced significant trauma. She is now safe but has since developed 'Functional Neurological Disorder' which is very frightening and distressing for her family who are caring for her, as well as being extremely scary for V.
What is FND?
Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body.
It’s often helpful to think of your brain as a computer. In someone who has FND, there’s no damage to the hardware, or structure, of the brain. It’s the software, or program running on the computer, that isn’t working properly.
The problems that cause FND are going on in a level of the brain that you cannot control.
Current situation:
V spent the weekend in A and E having seizures every 5 to 10 minutes to be released with no help. She cant go to UCL without a pediatric neurologist report and an urgent referral is at least 6 weeks. Meanwhile she is unable to walk as her legs are paralysed, having seizures repeatedly and is now starting to lose her sight. As soon as you mention FND, the hospital say they can only treat medical, the GP says its out of her expertise and CAMHs wont do anything with the reports. Its infuriating and not fair on a little girl who has been so disabled.
V desperately needs some physio and OT help. The lifting of her is so difficult and possibly dangerous for her and her family but they have no choice.
Last week V saw a private neurologist in Kent who can provide a multi disciplinary package but it will cost £10000. The family can't afford that but V is so distressed and so very disabled now and everything you read about FND says that early intervention is key.
The private neurologist said that it is not the fault of the NHS - it is because the condition sits between neurology and psychiatry so therefore no one takes responsibility.
V really likes the neurologist and they have made a contract that they will both wear blue gel nails when they next see each other.
This condition is a direct result of abuse.
Symptoms of FND
- Seizure-like episodes
- Movement problems
- Problems with cognitive function
- Dizziness
- Speech difficulties, such as sudden onset of stuttering or trouble speaking
- Problems with vision or hearing
- Pain (including chronic migraine)
- Extreme slowness and fatigue
- Numbness or inability to sense touch
Prognosis
As many as a fifth of children and adolescents seen in pediatric neurology clinics are found to have FND. An estimated 63% to 95% of these patients can fully recover if they receive prompt diagnosis and proper treatment.9 Mar 2023
How can you help
Friends of the family have set up this crowd funding page because we know how much the money is needed and also how urgently treatment is needed to help V return to being the funny, witty, clever and beautiful girl that she is.
Please share this page and donate if you can. Thank you.