Very unwell adult son, don't know what to do

[Feeltoooldtostudybutdoingitanyway]

Ds is in his first year at Uni. Came home for the Christmas holidays & managed to knock himself unconscious playing a sport. Got checked out, had a concussion, followed the concussion advice.

It's the worse concussion he's ever had but he was still determined go to back to uni. Not well enough to drive, so we took him back early Jan.

He has progressively got worse with loads of post concussion symptoms. Loss of appetite , excessive sweating, memory problems, concentration problems, mood changes, lethargic (sleeping around 18 hours a day).

Then last week he started passing out. Went back to a&e who gave him a scan & said that was clear so go back to GP for referral.

Trying to get that sorted, but I'm really struggling to help him access support remotely, he also has ASD, so is reluctant at the best of times.

My question is, has anyone had post concussion syndrome? Any tips on managing it? Currently he won't be able to complete the year if he doesn't improve soon, I'm also really worried about the loss of consciousness nearly two months after the accident.

It's hard to explain how ill he is, but he's really not doing at all well & I feel so worried for him

I think Headway has already been recommended. Do get in touch with them. I had post concussion syndrome after a ski accident. I was off work for 3 months. The only thing you can do is rest. I mean really rest, cognitive as well as physical rest. Trying to push through makes it worse and your need for time out last longer.

Would it help if you told him that seeing his tutor and the wellbeing advisor is simply the "standard thing to do" following a head injury? That all students who have that kind of injury do that?

Is there a neurodivergent and disabled students society at your DS's university? Or a group for autistic students? Talking to other students with autism may help him view deferring a year more favorably. Some of them may have taken a year out to deal with autistic burnout or other medical reasons and will 'get' how he thinks.

I'm hoping the university might be able to switch to a more coursework based assessment at the very least, where he can break up the time he needs to use a screen.

Just be aware that that might not be very easy to do. It might depend on the university but for me I would have to put a major modification in to change a module assessment on my course. Even for one student (I think). The course has been approved with the assessments that are stated.

I want to change one of the assessments from a written report to a written essay (same word count and learning outcomes) and can't even do that without loads of forms, various panels, gathering evidence, talking to the external examiner and approx a six month process!

We wouldn't do it - we'd say have extra time or interrupt for a year and get better.

Maybe not everywhere is as rigid!

I do think having a year out would be a good plan but appreciate it's not easy to get him to see it.

I have just recovered from post concussion syndrome and it has been really tough.
It has taken 6 months of lots of rest and limited screen time etc. It has been extremely debilitating, and even now I have the odd dizzy!
Please try and get him home, his brain needs to rest, so sorry for what you are going through.

Hi OP 👋 I'm so sorry you and your son are struggling so much 😔

I understand absolutely how utterly awful post concussion syndrome is. I had a head injury and post concussion syndrome a decade ago, before being injured by an off label antipsychotic prescribed for severe insomnia and anxiety after the PCS gave me a terrible breakdown. I literally was just in the depths of desperate despair, and all my physical and cognitive symptoms had become so overwhelming that I couldn't cope. Everything from slower thinking, inability to recognise familiar surroundings, difficulty with reading, tingling and pins and needles in my hands, loss of my mind's eye, terrible insomnia where I felt like a block of something was in my head and physically stopping me sleeping.. the list went on and on for nearly a year. It truly was hell.

I saw countless doctors and went to hospital numerous times. My family were distraught at how distraught I was. Nothing really helped, I over pushed myself, had too much stimulation and screen time, tried to work, then eventually had a breakdown after looking after my children and working made me even more unwell.

I was then given too many different psychotropic drugs to try and help, which led to the horrible first generation typical antipsychotic that gave me the movement disorder.

I'll reply more in a bit, just at work. Big hugs, you have my total empathy xxx❤️

And truly, it's still affecting me now, a decade later. I get episodes of where I feel my brain doesn't work and literally everything I have ever known has disappeared from my mind. It's terrifying at times. So please get your son to absolutely rest, it's so important ❤️😔

II totally understand, anything off piste or differing form their plans is ferociously rejected. It’s so hard.
What I would suggest is getting an outsider ‘expert’ to help them. For some reason anyone (except me) their opinion is valid and they will listen to them.

Could you get the GP to talk to him, or get an appointment for a concussion expert, or even the coach of the team to advise him? (After you have spoken to them and advised them that he needs to be dealt with carefully and tell them exactly what he needs to hear)

I completely understand what you are going through.