"Lack of Awareness of Post Concussive Syndrome"

My youngest son had an accident way back in 2014 and sustained what would be classed as a minor head injury – he was 9 years old. No-one was with him at the time he hit his head on our metal garage door at quite a speed and so no-one could say whether he had been unconscious. We found him lying in a pool of blood, confused and crying, and immediately called for an ambulance. During our short wait for the paramedic my eldest son did a CSI style investigation and pieced together what had most likely happened. My youngest son was then able to tell the paramedic, the doctors and nurses exactly what had happened to him. No-one listened when I told them he could only remember because he had been told. Because he could 'remember' what had happened he got to go home that night, there was no evidence that he had been unconscious and he passed all the tests. Away we went with our 'What to do after a bump on the head' leaflet and advice to take it easy for the next few days. What followed afterwards was to be nightmare for the next 18 months.

His symptoms seemed to come in different stages, and not in the days immediately afterwards, which meant it wasn’t obvious to us that they could be linked to the head injury and my son seemed to have trouble putting his finger on what was wrong – but he is a child, so how would he know what was wrong. He told us he was fine. They started with tiredness and a weird disinterest in everything around him. We went on a camping holiday, did lots of cycling, but it was hot and we put the tiredness and disinterest down to the heat. At the end of the first 2 weeks he had a panic attack. More symptoms followed; sleep disturbances, nausea and loss of appetite, memory problems, daily headaches. None of the symptoms were going away and after speaking to friend with medical knowledge- she suggested Post Concussive Syndrome, which completely made sense (especially as he had had two other minor injuries to his head over the years)! I went to the GP. The GP didn’t think any of the symptoms were linked to the head injury and was more interested in asking questions about our relationships at home, who lived in the house, how things were at school. He didn’t think there was any need to ‘fry his brain with unnecessary scans’. I mentioned there had been incidences of bullying at school the year before and these were jumped on and immediately deemed the cause. We were referred to Child and Family Mental Health and seen by a Clinical Psychologist, she assessed him thoroughly and sent us home. Suggesting it was best not to make fuss which might make my son think there was something wrong with him. I was confused by this – were we making too much of a fuss? Was I making things worse taking him back and forth to the doctors? Were we over thinking things? The report she wrote didn’t list all the symptoms we had mentioned and there was no mention of Post Concussive Syndrome. The conclusion listed a loss of confidence and cognitive fatigue (but not an injury to the brain). It felt like no-one was listening.

We endured another year of the same symptoms (which did gradually lessen) and many sleepless nights with worry and stress for us all, before we contacted the GP again and were referred to a neurologist. Only the headaches and the memory problems remained by this time. I suppose I was hoping for an acknowledgement that the symptoms my son still had were linked to the bump on the head – surely a consultant neurologist would have a good knowledge and understanding of Post Concussive Syndrome, but again this was dismissed. There had been nothing that caused clinical concern at the time of the accident and the injury had been superficial - only requiring treatment with steristrips! Also, too much time had passed and he couldn’t possibly still be having symptoms 18 months after the accident. I was shocked, again no-one was listening. Anyone can access basic information from the brain injury charities which state otherwise, so why were none of the health professionals aware? We felt lost.

There has been lots of awareness of Post Concussive Syndrome in the news over the last 2 years and I do hope that things have changed. I would hate for others to go through what we have - and still do go through. I believe that if we had received clear information, direct advice and support at the start we might well have been able to avoid many of the symptoms and struggles and stress we have had! Parents should be encouraged to trust their instincts and be seriously listened to. Surely a parent knows their child best and not the health professional sitting at the other side of the table seeing one patient after another?