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Child mental health

Functional neurological disorder??

11 replies

Flossie44 · 19/02/2020 11:11

Does anyone have any experience of this??

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Itis6oclocksomewhere · 19/02/2020 11:15

My eldest daughter had Non Epileptic Seizures which come under this umbrella.
She was treated by Great Ormond Street and has now recovered.

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Flossie44 · 19/02/2020 12:05

That’s great to hear. What a relief for you both. How long did the treatment take??

My dd is under gosh too. She’s got lots of inter related health issues. But this has now come as a bit of a shock. We’ve always had tangible results to go by. Now we haven’t for this and I’m finding it hard to get my head around.

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Flossie44 · 19/02/2020 12:05

Did they say what had caused it?

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Itis6oclocksomewhere · 19/02/2020 12:22

It does take a lot to get your head around. My daughter had other health issues throughout childhood, nothing major but things like glue ear, a stammer and ended up being diagnosed being a coeliac when she was 12. So I found it really hard to understand and I suppose I even found it hard to come to terms with for a while.
The treatment was weekly for about 6 months, then dropped to every fortnight and eventually decreased to monthly.
She had her last seizure in Oct 2017 and by that point they were seeing us every 3 months.

Her seizures were caused by cognitive difficulties. She was cognitively below her peers. I had always thought she might be dyslexic or something, but any testing showed she was just above the threshold.
GOSH did lots of educational tests with her and it was shown that her comprehension skills were significantly lower than they should be. Something that wouldn't necessarily have been picked up by tests in school.
GOSH asked my daughters school that she drop her language GCSE. No point in doing something when she would benefit from catch up with the core subjects. She also dropped PE as she did exercise out of school and again she needed to catch up on work missed in YR 9. She missed the majority of that school.
They also worked on relationships with DD too. She had an incident with a teacher in YR 7 and although she said she wasn't bothered by it, they think it effected her esteem more than we thought.
Our DD is one of three and we did work with family relationships too. Quite a lot to explain with this but happy to DM you if you'd like me to?

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Itis6oclocksomewhere · 19/02/2020 12:23

Sorry for the essay! 😂

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Lostpuzzlepiece · 22/02/2020 13:51

Hi, I have just been diagnosed with a form of this.
All a bit tricky to get your head around and it did feel at first as if I was being fobbed off.
What symptoms do you have, if you don't mind me asking? I have myoclonic jerks/involuntary movements. PM if you want to chat :)

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Lostpuzzlepiece · 22/02/2020 13:54

Sorry, I meant what symptoms does your DD have? :)

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Flossie44 · 22/02/2020 15:40

She has crps. Plus episodes of fixed dystonia in her arms and legs. Plus Laryngeal spasms. It’s hideous. It’s such a cruel illness.

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Lostpuzzlepiece · 22/02/2020 18:18

Oh bless her. How old is she? What treatment/support have you been offered?

If you haven't already/if you are able ask for a referral to Professor Mark Edwards at St George's hospital in Tooting. He is a specialist in Functional Neurology & people travel from all over to see him. He has helped many, many people with this horrible illness.

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Flossie44 · 24/02/2020 08:21

Thank you. She’s 11. She’s under gosh.
It really is a horrible condition. She has episodes of dystonia, crps, and Laryngeal spasms that stop her breathing.

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MaitreKarlsson · 28/06/2020 06:59

Old thread but have just come on to second the recommendation to Prof/Dr Mark Edwards at St George's. I used to work with him: he is excellent and genuinely cares about his patients. Has helped many many people!

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