Daughter just diagnosed with Fnd

[Hippydaisy]

After 8 months of going round in circles my 16 year old daughter has finally got to see a neurologist who has diagnosed her with Fnd.she is currently in a wheelchair as has lost strength in legs, collapses, has seizures, pains and hands and feet, twitching/jerks, low mood to list a few symptoms,

I'm looking for advice as her Mum what I can do to support her, keep her comfortable and try and stop these symptoms, it's heartbreaking watching her like this when she wants to be a dancer...

Any advice really gladly received!

Many thanks

[geordie-girl]

Hi Hippydaisy, o sorry to hear that your daughter has FND, it is so hard to watch her go through this symptoms as I have FND and my husband finds it hard to watch as there is nothing he can do but to support me. Have you got an understanding GP. Not a lot of doctors have heard of FND. Ask if she can get a referral to the National Neurological Hospital in Queens Square London, they might be able to help her, but there is a long waiting list. I have been but it did not help me, but it could help your daughter. Have you been on th FND website. She should talk to to other people on this site as she realises she is not the only one. Medication might help. Hope this has been helpful to you. Please let me know how you get on take care, love and hugs from Geordiegirl

[Hippydaisy in reply to geordie-girl]

Thank you Geordie girl...yes I've had a meeting with Camhs for support and I ended up telling them more about Fnd than them as I've been researching and googling...think this forum is going to be a lifeline! Xx

[Bluecat99]

Hi, really sorry to hear what your daughter is going through. It is hard enough experiencing it as an adult (I was diagnosed 8 months ago), but must be even harder as a teenager.

There are another couple of websites that may be useful - FND Action, which has its own facebook group, and FND Dimensions. The latter is about trying to connect people with FND to reduce the isolation for the sufferer and also for the carers. There are a small number of support groups appearing around the country, but FND Dimensions may be able to help. If you are based even remotely near Bristol, check out Bristol FND. This diagnosis can be incredibly isolating, but meeting others who have the same diagnosis, even if symptoms are considerably different, can help both patient and carers / family. I hope this helps.

[Hippydaisy in reply to Bluecat99]

This is brilliant info , thank you so much xx

[Bluecat99 in reply to Hippydaisy]

You are very welcome

[Lucy-15]

Hi there ...what a tough time you must all be going through....just a thought but you could also ask your GP or neurologist to refer you to Prof Mark Edwards if in south of UK....he has set up an NHS clinic for FND based at St Georges Hospital in Tooting Bec.

He runs different treatments depending on what's needed - I found the 5 days Physio treatment helped me manage my walking difficulties...but we are all different. Hopefully your find support on here, as we all appreciate how difficult it is to know which way to turn next. Take care Lucy

[Hippydaisy in reply to Lucy-15]

Thank you for telling me about this clinic , Camhs and GP weren't aware! Xx

[Hidden]

Hi, All you can do is support her, as she will have good days as well as bad days. She could also grow out of it, and symptoms could disappear. I was seven when I first started having the troubles unable to walk, etc., then had a big break with no symptoms. Then in the last 8+ years it got worse again,but with medication and keeping stress free and garlic free, it is under control and more mobile (I'm 45 now). Try and keep her stress free as this could be triggers. Also check if FND is the only condition she is suffering from, try and find out if there is any triggers as I am allergic to Garlic which triggers it. As we are affected differently, that's the reason why they call it FND.

Hope all goes well, and symptoms become more manageable.

[Hippydaisy in reply to Hidden]

Thank you...I'm going to look into diet now, thanks for the advice xx

[andyglasgow2016]

As a youngish (29) guy my advice would be loving as u already are but to also encourage her to set goals to accomplish each week. Getting into some sort of Physio whether it be getting to the swimming pool to get legs free and moving a bit... find a good sports centre which has good access e.g. Hoist and suitable changing room etc and staff who can help assist into pool.

Part of this will also helping your daughter accept that she has to help herself too and not allow the diagnosis to rule her,but for her to rule the diagnosis.

Encourage her also to help you with things in house such as cooking .. take her equipment to where she is sitting to cut etc and also push herself to live as much of a normal life

[Hippydaisy in reply to andyglasgow2016]

Thank you x

[Hidden]

Just to add to others info GP can refer you for home O T and possibly physio assessment if your daughter hasnt had one.

Mel

[Hippydaisy]

Thank you xx

[Hippydaisy]

Thank you everyone for your replies , I'm blown away as I've never used a site like this before and wasn't sure what to expect,I seem to be getting v little info from nhs...Fnd is not even listed on their site! , so advice here is just amazing , and hearing other people's experiences ...thank you for making me feel less lonely in this xx