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

He needs to speak to his personal tutor. I had concussion several years ago. my symptoms were not as bad as your DS though I did have horrific headaches and did struggle to concentrate for three months. I had a chat to headway the head injury charity who were really helpful.

Thanks, he's never met his tutor- that's been an on going struggle, but he does have a well being advisor, so I will see if he can meet with them.

Yes he also has horrible headaches & times when he says it feels like his brain has just stopped working.

Headway is a good shout thanks, I'd forgotten about them but remember from a previous occasion that they are useful.

My main concern is the losing consciousness, I don't know whether he needs to pause his studies to recover or if its something that can be managed carefully.

It sounds like he’d be much better off taking a break and re-starting next year if he can. Otherwise he’ll be playing catch up and not doing his best and that’s a horrid situation to be in at uni.

I agree with PP re restarting the year tbh. I would speak to his uni via wellbeing officer or tutor to find out what his options are but it seems that temporary withdrawal may be the best idea at this stage.

being as unwell as he is he’s probably not doing his best at uni anyway so taking a break might sensible. If you’re in England and he’s at uni with SFE you need to get advice on this from them as well as uni. There are ways to pause studies without losing the finance option (normally a 3 year course will be allowed 4 years finance ‘just in case’).
I can’t believe he hasn’t met his tutor!! Is he supported by any external agencies at uni?

Great advice above.
I would also be encouraging him to give up the sport if it is one well known for getting concussions. I realise that that might feel very hard. Obviously you can’t avoid all head injuries, but the more you get in a lifetime starts to build up. Is there something else he could move across to? He really doesn’t want another concussion in at least the next year if this one has been so bad. I personally wouldn’t think planning to get back to rugby for example would be smart at all.

I feel for your son. I had post concussion syndrome some years ago, one symptom was walking sideways. The whole thing was weird and very uncomfortable.

It takes time but does go.

Your son needs to come home to recover. His doctor will back him. He can return to uni at a later time. His health is more important than anything else. If he is at home with no pressure, his recovery will be smooth.

Honestly I would see if he can't defer his studies for a term and heal up

So glad the scan came back clear! That must be a relief. Sounds like he’s going to need some more time to recover. I suppose it’s the equivalent to breaking your leg and carrying on walking on it. Hope he picks up soon. Must’ve been an awful injury. Take care.

Thanks, he's never met his tutor- that's been an on going struggle

Uni Lecturer here - it doesn't matter that he's never met his personal tutor, they will still be workload and responsible for pastoral care and advice. He should also have a year tutor he can speak to if the PT decides to be an arse.

I had it a few years ago after getting a head injury in a very bad car crash. I felt absolutely awful so I really feel for your son. I went back to work too soon and pushed myself too much which really didn’t help. It took about 9 months for me to feel completely better. The only thing that really helped me get through it was resting as much as possible, drinking lots of water and taking painkillers when it was really bad. Hope he feels better soon

He needs extra sleep, no screen time (or as close to none as is manageable), no demanding cognitive activities, absolutely no alcohol, a healthy diet, mild exercise, fish oils and endless patience. Maybe vestibular therapy would be worth look into. It's a lomg and hellish recovery but he can recover.

My friends dd had this too, she has completely recovered, but it took a very long time,

I hope your son gets better soon.
In your place, I would bring him home for a few weeks and see a specialist just to be absolutely sure, it’s dangerous passing out without notice. Ds can catch up, but his health is the most important thing atm and needs to be prioritised.

My DD had this just as she was going to uni. It was so debilitating- she had the headaches, dizziness, loss of concentration, fatigue. So many hospital visits! The university was really good (Bristol) when she told her tutor and they put all kinds of support in for her, including extra time to complete assignments after she showed them her medical reports (she could only sit at a screen for 20 minutes at a time). It would definitely be worth him talking to his tutor to see what can be put in place for him.
DD gradually got better, but it took a long time and it was pretty tough for her.
She graduated with a First in the end, but I’m not sure she’d have coped if the uni hadn’t been aware or as supportive as they were.
She’s banned from any more contact sports - I can’t cope with the stress!

edited to add: it’s probably best for him to come home and recover and start again when he’s better, if you can persuade him

When are you going to see him. Personally, I'd be on the way.

Please onsider asking GP for a referral to the nearest specialist brain injury team whether that's nearest to uni or home as they can offer good support and advice to him as the patient and you as mum.
Recovery from an acquired brain injury (ABI) takes time, the brain is so complex even the experts don't know absolutely everything. Also CT scans do depend on how good the scanner is as well as the skills of the radiologist.
Maybe consider a second opinion if current medical advice is not helpful.
Your sons symptoms are clearly evidence his brain has suffered some trauma so I would recommend a discussion as soon as possible with GP about whether its possible for a referral to be made to the nearest specialist ABI team (ABIT). It can sometimes be a postcode lottery but there will one near to your boy somewhere.
Its an incredibly distressing time for you all, stay strong 💐

Personally, I’d bring him home and start again next September

I also had post concussion syndrome after a head injury and it was awful. I went back to work and walked through the door and couldn't remember the names of people I had worked with for 15 years.

Please see if you can find a head injury recovery physio - I think it's called something like neuro rehabilitation? I didn't see one but I met someone with PCS who had and they found it really helpful

Headway may be able to help if you haven’t already spoken to them https://www.headway.org.uk also if it was rugby and he was playing for a club you could speak to them. There are much tighter protocols around head injuries now and it should at least be reported to them how bad it is.

We can give all this advice but if he is anything like my relative wit ASD, he will be impossible to get through to. You will be met with impenetrable opposition to every suggestion, and no thanks when this is over.

Have you anything visually you could show him to explain how ill he is?
He does need medical attention again. I know the scans were clear but he obviously needs physio as mentioned above, or help to recover from a medical expert.
It’s so hard I totally understand.

Firstly thank you so much for all the replies, just reading through them now. To answer a few questions.

@Bobbie12345 luckily it wasn't a sport he plays regularly, and I'm pretty sure he isn't tempted to do again!

For all those saying defer the year, that was my immediate thought as well, unfortunately we have the extra battle that he is very rigid in his thinking & the last time he couldn't do something the 'standard' way as he sees it, in the same timeline as his peers, his mental health deteriorated to the point he was hospitalised. So I'm trying to find the balance between his different health needs & find a way of advising him without further distressing him.

I have been up to see him once since he passed out, I would be up now if I could be, it's a case of everything happening at once, I was in a car crash the day after I visited him, not a bad one, but I don't currently have a car whilst mine is fixed.

I'm going to try & see if our GP can do a referral today, he is still registered here rather than at uni due to being on the wait list for various referrals for his other health needs & our GP managing his anxiety medications etc...

@Tangwystl 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.

@MellowTiger he was assessed for support from external agencies via student finance and given a fairly healthy package of support, so far he has had zero due to lack of approved supplier availability in the city his uni is in. It's been an ongoing battle. With regards to all his home based support, it stopped at 18, he was assessed as having ongoing need but the funding just isn't here for anyone who goes to uni.

I'm going to read all your posts again now & try & follow the practical advice as much as possible. Thanks

Your DS meeting the wellbeing advisor is a good first step. You should be able to contact student wellbeing yourself and let them know what's happened to DS, possibly not your DS's own advisor and depending on what agreements the students have given when they start they may not be able to say anything to you (maybe not even confirm that DS is at the university!) but if you give your DS's name and year they'll be able to follow up with DS.

Do you know who his personal/academic tutor and/or year director/ programme director are? You can also contact them to flag this up, they also may not be able to say anything to you but they will also follow up.

Your DS may be best off starting the year again in Septemeber, even if he continues this term this injury will probably affect his studies and he should apply for "special circumstances" mitigations. His wellbeing advisor and/or academic tutor should be able to point him in the right direction for these things.

@3luckystars exactly this! His opposition and refusal has increased since the head injury. It's why I am feeling so worried, he took himself back to a&e, which is a massive trigger place for him, so I know he is feeling really ill.

Unfortunately due to delays in a&e he was waiting 13 hours and only had the scan, didn't wait for the results due to becoming disregulated. I had to call and get the results the next day. So his current stance is the hospital made him feel worse and he is never seeing a Dr again.

nb I believe some universities now ask students at registration to sign that they can share information with nominated people like parents. Not all do this. But you can still share information with them.

Is he playing computer games? They are really bad for concussion recovery.

I agree that is looks like he needs to defer and rest to give a chance to recover.
Poor lad.