Found this useful resource on Hope Site for children and young adults with FND

[Lady4]

fndhope.org/wp-content/uplo...

[210272]

Thanks, Lady4. While I am sure this workbook will be helpful to some young people I have numerous concerns about it, not least the expectations put on them to spend their weekends on this. But my main concern is that we now know the purported prevalence of FND (as mentioned in this workbook) isn't what they say it is. I doubt the authors are intentionally misleading young people but hope they will update their information (and that Prof Stone will too, on his self help site) in the light of this:

virology.ws/.../trial-by-er...

[Lady4 in reply to 210272]

I must admit today I read it thoroughly together with the links and note what you are saying about 2nd reported neuro condition and actually its the 8th, I believe. However, as a parent and sole carer, I found the resource very user friendly and think newly diagnosed adults would benefit too and goes pretty well together with the comic style story. Getting my son to read it (esp when I mentioned how long it took me this morn - another error) which I will correct as he can absorb it at this own pace.

The Fri - Sun bit at the beginning is a suggestion and it says any it can be started on any day. Regularly working through this work book including weekends is reasonable because its not asking them to do it for hours on end and it could easily be fitted into their routine if they were open to that.

As a parent I have made all the mistakes as had no consistent medical support (mainly chasing my tail and battling with the authorities) and I have prob overloaded him with my suggestions (through endless hours of research) and offers of getting specialised help, be it counselling or help with schooling (due to the fact he has missed so much).

As his brother said to me this morning, I have to sit back and let him fine his own way through.

I am hoping our first ever neuro appt in a year will guide him. I have been told to make notes, have a video, spend the time wisely but I sit here and don't know what to ask.

[210272 in reply to Lady4]

Lady4 - thank you for taking time to respond when you already have a lot on your plate. It's so hard when we don't have proper support with our own health so I can't imagine what you've been through without anything approaching adequate support for your son, or you. I think you have one very wise son, though, and you will find the best path for your other son. None of the mistakes are yours - it's systemic.

I'd take notes about what you want to ask (eg what support your family can have regarding schooling and if there are any clinical trials or other interventions that could help) and record the consultation so you are not having to write everything down during it. I'd also ask your son what his priorities are since sometimes neurologists can have different agendas to those of their patients and our families.

[Lady4]

Thanks for your advise.

I am still struggling about what questions to ask. I know they will probably offer him an MRI and EEG, I also think that will add stress and come up with nothing from what I have read thats pretty much how it goes.

School, although disbelieving with the symptoms at first did make adaptions for him but the constant falls and involuntary leg spasms made it impossible for him to go downstairs and OT never bothered to visit, so no help there. Neuro physio made useful suggestions like trying to wait bear regularly rather than waiting for them to subside, although that was diff to monitor regularly.

However, when they made suggestions like he could come in for an hour or just breaktimes just to get used to be back at school due to his absence, I thought have you listened to me .. and my sons opinion ... if I can get there for an hour I would stay all day.

With the headaches its different, he can get downstairs. Getting him to go, is more challenging. He is in pain and naturally its the ones closest to you that get the brunt of it and most the time thats fine.

Thanks for your support. I have read a lot of peoples stories and how out of control this can be if I don't tread lightly.

[TheFourAgreements]

Lady4, the link does not seem to be working for me. Do you know if there is an updated link? A name of the book, so I can search for it? Or could you send the pdf? Many thanks!