Kieran Miller's story

Kieran was ill for around three weeks before his diagnosis. He had a cough and a cold which wasn't unusual for him, he was a sickly child. I tried to push him on and sent him to school thinking he'd soon get over it if he kept busy. He was in year 3 at the time (7 years old).

Going into the third week into his illness, he began getting a high temperature. It was controllable with paracetamol so I kept him off school for the Monday and Tuesday but by Wednesday he was picking up so we both went back. (I worked at his school.)

On the Thursday I was on a school trip but when I returned I was called into the office. Kieran had been in trouble for saying an offensive word. It was unusual for him and the teacher said she thought he was still too ill to be in school and suggested I keep him off the rest of the week.

He went downhill from there. His temperature was out of control and wouldn't come down with a mix of paracetamol and Ibuprofen. He was sleeping most of the time. He woke up on the Sunday morning and cried. He said the light hurt his eyes which rang alarm bells for me. I checked him for a rash but there was nothing there. His temperature was still very high and he seemed lethargic most of the time. Because of his complaint about the light I called 111 for some medical advice. They called an ambulance out to me straight away.

The paramedics were great and took us to the hospital for checks. It was busy in a&e with lots of football injuries. I remember asking the nurse if we could turn the lights out in the cubicle because it hurt Kieran's eyes and she rolled her eyes like he was making it up so I thought maybe we were overreacting. They monitored him for a couple of hours and then a doctor came and assessed him. He felt his stomach and Kieran winced so he said it was probably a tummy bug despite Kieran not being sick. We were sent home Sunday afternoon.

By now Kieran hadn't eaten in over a week and was hardly drinking. He just wanted to sleep and the room had to be dark. I decided to keep him in my bed Sunday night because something felt off. My husband was due to leave for work in the early hours of the morning as an HGV driver and he decided to sleep in his lorry that night to give us a good night's rest.

During the night Kieran was very unsettled. His temperature was still running high and he was hallucinating. His eyes seemed sunken and he didn't look like his normal self. He woke me and told me he had to leave me. When I asked why he said he wasn't sure but I wasn't allowed to go with him. This scared me enough to spend the rest of the night watching his every breath.

Morning came and he woke up screaming. He was gripping the headboard and lifting himself off the bed, writhing in pain. He screamed that his head hurt. I rang 111 and the operator told me to hang up and dial 999 for an ambulance. They sent a paramedic car. She assessed him and told me his vitals were all fine. She said she agreed with the hospital and that he was probably fighting a viral bug of some sort. By this time Kieran was calmer and sleepy again. I couldn't shake the feeling off that something bad was happening. The paramedic sensed my unease and said if I was really worried I should call the go surgery when they opened. That was another hour away. She said to try and get Kieran up and about, laying him in bed in a dark room wouldn't help him, she said he needed to be sitting up.

She left and my husband came home, my older son had called him in a panic. He helped me to get Kieran downstairs because Kieran couldn't walk and cried when we tried to get him up and about. He got on the sofa and curled up in a ball and went back to sleep. My husband also felt wrong about the whole thing and refused to wait for the GP to open. Instead, we got Kieran in the car and took him to a&e again. My husband dropped us off out the front so he could park up but Kieran screamed when I lifted him from the car. His limbs seemed stiff and the light really hurt his eyes. I got to the desk and they told me to take a seat. Then she rang through and said he needed seeing urgently, she thought he was very sick. From there it was all go.

Kieran was vomiting. They put oxygen on him because his levels were too low. His skin was mottled and his eyes were sunken. They started talking brain scans and sending him to the neurological ward. We didn't have a clue what was happening. We met the consultant from the neurological team. She was concerned that Kieran's pupils were different sizes. He had to go for a scan and then we were in a side room in that ward. Kieran was now acting odd. One minute he was fine, like completely normal and not ill at all and the next he was touching my face like he didn't know who I was.

He was moved onto the intensive care unit. His veins were tiny and hard to find and so they had to pin him down on more than one occasion to get blood. He screamed every time. It was awful. He swore at the nurses and fought them off. It was so out of character for him. They decided to move him to critical care and put him in a room on his own. The nurse there persuaded me to leave him to sleep. They gave me a room in their hotel. I was called within an hour to say he had become distressed. I got back to his room to find three doctors trying to entertain him and distract him from his crying. From that day on I didn't leave him.

The next day we were told they were pretty sure he had meningitis but they were growing his blood to confirm it and to discover the type. I spent hours researching different types of meningitis while we waited for the results. In all, he spent a week in the hospital. It was distressing because his canular kept coming out and each time they replaced it he would scream and have to be held down. He hated the smell of food etc. He couldn't stand without help and complained of joint pain. But we were lucky because he survived and he didn't lose his limbs, all the sad stories I'd read made me realise that we were so lucky.

Once we were home, we had district nurses coming out every day to give his medicine and boy was there a lot of that! I was relieved they hadn't asked me to do it. Four weeks after his diagnosis he went back to school part-time! We were amazed at his recovery. It wasn't until a few months after we noticed little things. His temper was very bad. He had no patience and he would forget words when he was talking. I'd read this was normal and it would take time for him to recover.

After six months I went to the GP. I told him about Kieran's mood swings and he said it was normal for a boy his age. He said to give Kieran a full year to recover and then go back if I still felt things were an issue. I changed doctors. I still waited for another 6 months before I went back. By this time, Kieran was very up and down. He was behind in his school work and the teacher noticed he would drift off and daydream a lot in class. He seemed down a lot. He would call himself thick and stupid. When he was upset he'd bang his head against the wall. This time the GP said he would refer him to the hospital. We hadn't heard from them since Kieran's discharge. He asked for the school to write a letter too so we'd get a quicker referral. You soon learn that referrals are never quick in this game.

The months of waiting took their toll on Kieran. He became much worse and almost seemed depressed. We eventually saw the consultant. He referred Kieran to CAHM's but again that was a waiting game. The first CAHM's appointment gave us self help tips. It didn't help and Kieran then got worse and talked about killing himself. He tried to cut himself in class with scissors. He threatened to jump out of a window because he just wanted to die. He would have blackout incidents where he would just stare blankly at me and not respond. We went back to the consultant who referred him for an ECG. He had two of those in total which took another year of waiting for appointments or results. They showed slowing of the brain but not epilepsy.

He went back to CAHM's and was reassessed. He was offered 10 therapy sessions. They helped slightly but not much. We've finally, after 4 years, been referred to a brain injury specialist. With that, Kieran gets support from the brain injury trust. She has been amazing. She explained that Kieran has been left with frontal lobe damage. She explained it in a way that Kieran understood and for the first time, we saw an improvement in Kieran. He realises that he isn't thick or stupid. That he can't help any of this.

We're waiting on some other tests to come through that will pinpoint what Kieran struggles with so that school can help him. But I've come to the conclusion that schooling isn't for everyone, especially those that need extra support. We've spent the last four months in lockdown due to COVID-19. Kieran's been off school and that's given us a chance to let him rest mentally. But it's also meant that we've had no medical or professional help and all appointments are on hold. It's another delay we didn't need.

We've spent four years fighting to get Kieran the help he needs. It's a struggle but we've learned as a family that Kieran does things differently and that's okay. We have adjusted and become more patient. We think ahead and plan and that keeps things calm for him. So yes, we were so lucky to have him survive an awful disease. But we didn't get off lightly, every day is a battle and we have learned to fight and keep going.

Nicola Miller
July 2020