For lady4

Hi lady 4 are you ok you've been quite quiet over the weekend,I hope you and your son are well . Take care.

[Lady4]

Hi, yes I am fine thanks, I try and take some downtime from the Communitys at the weekends but its easier said than done. Hope your still singing along to the radio.

[Oskarboughton]

We are fine thanks 🙏 my son is still struggling to walk properly and has very bad lower back pain 😱

[Lady4 in reply to Oskarboughton]

Hows is his posture?

[Shimmyaway in reply to Oskarboughton]

So what has been put in place for your son? An outline of the optimal therapy route can be found in the article recently posted by Lady4 ,,with advice for clinicians and mums and dads ..the latter 2 usually being the only 24/7 brain rewiring agents available .

psychiatryonline.org/doi/10...

[Oskarboughton in reply to Shimmyaway]

He hasn't had proper diagnosis yet.....he had a brain and spinal scan last Friday and we have a appointment at the private hospital on Friday with neurologist 🙏 he is saying it's most definitely fnd..... We went to the neurologist after being sent by private spinal specialist

[Shimmyaway in reply to Oskarboughton]

Knowing is at least better than not knowing. Neurologists don't have a great record on FND treatment .. it needs a team approach, so it is likely he will refer you on .. all the best for that journey. I read that FND has increased amongst teens and oldies ever since the pandemic .....those who will find it harder to cope with it too...sad

[Oskarboughton in reply to Shimmyaway]

I'm very bitter that I've had to go private and find out from a specialist as my GP and doctors at my local hospital couldn't do anything with diagnosing my poor boy 😱

[Shimmyaway in reply to Oskarboughton]

I really sympathise with this, and if you saw a neurologist at your local hospital it is indeed not acceptable that they are not up to date in how to diagnose FND ..or if you saw someone from a different discipline, they were unaware of the possibility of FND. I was lucky in that respect ..diagnosed at the first consultation. Much more FND awareness is needed amongst all health professionals.

I am very dissatisfied with my local MH Trust as regards treatment .. and have informed the CQC of their devious tactics .. no accommodations for patient disability, encouragement not to attend, refusal to discuss therapy outcomes, premature discharge, . and 'limited facilities' for using PALS! GRRRR...

You will learn more on this forum than from the medics! I know I am benefitting .. the progressive muscle relaxation someone suggested has meant much less shaking, and more sleep too, Has your son ever tried it? The info about sugar might help your son too. It's all trial and error ..but we can't give up... things have moved more, but not enough, in the last 5 years. Best foot forward.

[Oskarboughton in reply to Shimmyaway]

My son had MRI for some virus 6month ago which I now understand is most probably connected to fnd.... Chronic diarrhoea for 7week 😱 all the symptoms were there but unfortunately my GP refused to send him for another scan as to much radiation ☢️ after taking my poor lad back and forth to two different hospitals after two months with chronic lower back pain..... They only offered him physiotherapy in another month!!!! That's when I decided to pay private consultation with spinal and neurologist specialist..... I'm 2k lighter with my bank balance and still awaiting more after results from brain and spinal scan which I get results on Friday 👊💥

[Shimmyaway in reply to Oskarboughton]

I am sure the financial hit is a setback ..but at least you have a more precise idea of what you are dealing with now , know what sort of treatment he needs and what you can try whilst waiting for the appt .. which I expect will be with a pediatrician who hopefully will have a team of OT's and physios. Physio for FND is specialised ..google 'physio4fmd' ..there is a workbook (free). In the meantime encourage moving the legs/ walking whilst focusing on something else ..e.g a football in front of him... should motivate too. I expect you know that if the scan shows no physical problem, the DRs take that as confirmation of FND? It's hard to know what to wish for!