Does anyone here have a child with (severe) FND? What helped?

[sunonthetrees]

Just that. I can't get my head around what this disease is, or what even has the possibility of helping. Has anyone had/does anyone know of a child who has recovered? What made a difference?

My daughter's friend is 15 and has been dealing with this for over a year. I know that they have been exploring many different avenues, and she does seem to be improving, but it has been horrible. I'm sorry you're in this position. Has it come on recently? How old is your child?

If I can get any details about what has helped the girl I know, I'll pass them on. Might be worth seeing if there is a support group on Facebook in your area too.

💐

Yes, it's recent. He's 11. I'd love to hear anything. I've dug around a lot on FB and there's lots about adults but I really can't find anything helpful for parents of children w FND (esp w the serious level of illness DS has).

Functional Neurological Disease?

If this is what he had then there is large variety in symptoms.

It's what neurologists diagnose people with if there is an obvious neurological problem but it's not one of the named ones - MS, etc.

Look at his symptoms. What symptoms does he have? Try to work on those.

I have an FND diagnosis (in addition to other stuff) following an accident.

Yes, that’s right.

has been diagnosed in a quite a topsy turvy way (not by neurologists, tho I think that will come)

he can’t seem to work on symptoms, but what you are saying does make me think about why no one is suggesting any work at all on speech…

Neurosymptoms.org is a good website if you haven't been there already definitely check it out.

You probably know this but it’s worth having a read up on PANS PANDAS. (Despite what some - including some doctors! - might say, it is a real condition)

I can’t see PANS/PANDAS in him at all but my confidence in my understanding of what is going on is so totally shot that I no longer have any idea of what to think…

My daughter has FND. I found these books most helpful:

Treatment of Functional Seizures in Children and Adolescents: A Mind-Body Manual for Health Professionals https://amzn.eu/d/5bTWtzP

Functional Somatic Symptoms in Children and Adolescents: A Stress-System Approach to Assessment and Treatment https://amzn.eu/d/fC0Cwz0

You can get both for free as Kindle versions from Amazon. They are for professionals but are relatively easy to understand.

Your son might want to try this:

Reset & Rewire: The FND Workbook for Kids & Teens
https://amzn.eu/d/41Ftg0u

There is a specialist FND team for children and teenagers at UCLH called TRACCS. https://www.uclh.nhs.uk/our-services/find-service/children-and-young-peoples-services/chronic-fatigue-syndrome

I don't know if this is any good, but maybe you want to have a look: https://www.teenfndacademy.com/

You have probably come across this:
https://www.fndhope.org.uk/about-fnd-hope/fnd-hope-uk/fnd-treatment-uk/

This Facebook group is fairly active:
pnes parent support group