We’ve been home from hospital 3 weeks. My amazing 16 year old son has survived despite all the odds. We live in Thailand and he suffered a massive brain trauma after crashing his friends motorcycle without a helmet on 31st December last year. He had a difficult journey; craniectomy at the time of the accident, an operation to plate his face a week later (the impact went up through his face which no doubt saved his life), he suffered pulmonary emboli a week after that (his heart stopped more times than I can remember and the amazing doctor and her team took 7 hours to stabilize him), two further surgeries because he had a massive cerebral pneumocephalus (one for a drain and the other to repair the damaged dura), then finally a cranioplasty.
His recovery has been amazing. He is physically mobile and cognitively has surprised everyone.
He’s clearly suffering from PTSD (how could he not and having problems with his short term memory although this seems to be improving slowly. He also has problems with his sight but I’m too scared to take him to a hospital at the moment. At the moment he can still read both English and Thai (he is bilingual; but with some difficulty. He says one of his eyes is blurry. The damage to the bones in his face was extensive so I’m not surprised.
What I’m wondering about more than anything is that he seems to have hallucinations. He keeps telling me he’s been seen or been speaking to his grandma (who lives somewhere else). He was seeing the police but this seems to have stopped and sometimes it will be something odd like the parked car is moving. Has/does anyone else experienced/ experience this? He takes Keppra (5ml am and the same pm) and I’m wondering if it could be that? He’s also v verbally abusive, especially in the mornings when he’s tired but I assume this will improve over time but I’d be grateful if any of you have any words of wisdom. I’d be very grateful. There’s no rehab available here so I feel like I’m on my own with this. Many thanks.
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Emma23M
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Emma, please call the Headway helpline on Monday as they have a world of professional knowledge and an approachable, caring team offering support & advice at the end of a telephone.
There's a mass of information online from many reputable sources discussing hallucinations after brain injury, so it's an established phenomenon. But I think speaking one-to-one with a team member would be the most rewarding and reassuring. I hope you'll give it a try....
The helpline no. is freephone 0808 800 2244 during office hours.
As you know only the medical team can advise to your sons medication but I can only speak from my husband’s experience on keppra. It gave him terrible hallucinations and horrible irritability.
He swapped over to Epilim and after a month there was a huge difference.
Thank you for your reply Sarbear. really am not keen on him being on Keppra. The keppra was stopped, while he was in hospital, after the cranioplasty and that was when he had his first seizure. The consultant here said was reluctant to use another drug but I could go back to him I’m sure. The only problem is Covid at the moment and he is 3 hours away😞
Emma, I've copied and pasted the following post from 'tennijul' as it's obviously intended as a reply to you and I didn't want you to miss it :-
Hallucinations
tennijul
35 minutes ago•0 Replies
I was involved in a RTA at 19. As a young adult I did experience similar to your son such as objects in paintings moving inside the paintings. Like the where alive. In my 30's I developed epilepsy. This was considered at the time to be partly due to the brain injury and partly down to high levels of stress I was experiencing. Similar things started to happen again when I was aa going into a seizure and I wonder if the too where linked. Migraines too have led to me seeing moving shapes and colours. I feel all of these symptoms are linked to my TBI
Emma, following on from Tennijul's reply, I've had hallucinations during migraines but didn't feel it was appropriate to mention earlier. However, since Tennijul mentions migraine I've had second thoughts. Mine were quite bizarre hallucinations in the corner of one eye and I clearly saw lively images of factory workers from a past age operating machinery.
I assumed I was going out of my mind 'til my ophthalmologist told me he was fully aware of the syndrome and that it was symptomatic of sight failure in Charles Bonnet syndrome and also migraine.
He assured me mine was almost certainly migraine related and not an vision issue. So I just wanted (as Tennijul seems to do) to assure you that weird symptoms can have simple explanations. Cat x
Cat, thanks so much for copy/pasting the reply and for your reply. He definitely has been left with either a temporary or permanent visual impairment in either one or both eyes which needs to be followed up. I think we will have to get covered up and venture out to the local hospital where the eye specialist knows him.
It’s early days and I know that it’s going to be a matter of careful elimination and adjustment. Interestingly, he says he has no pain. I have no idea how he can’t have even some but at this time I take it as the blessing it is. Thank you
Hi Emma I am so pleased your son has made such tremendous progress after his accident. When I was first diagnosed with a non malignant brain tumour and Epilepsy I was prescribed Keppra. Unfortunately, it made me very sleepy, I even went to a friend's wedding and slept throughout. Before my diagnosis, I was experiencing strange feelings in my head which I now know were deja-vu, I could see things from my childhood. Since then I have tried a few medications, but my seizures are still not fully under control. I wish your son all the best for the future.
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