The parents of a six-year-old Banbridge boy – who this week suffered 23 seizures in 24 hours and is terrified of going to sleep – have been waiting for over a year for a brain scan to find out what, if anything, can be done to help their son.
Corinne and Leo Laute feel they are running around in circles while demanding answers, yet constantly being fobbed off in their efforts to make little Conan’s nightmares go away.
This week Corinne has made a formal complaint to the Northern Ireland Public Services Ombudsman and has asked Upper Bann MP Carla Lockhart and all five local MLAs to intervene on their behalf.
She did so after failing to make any progress with a response to an earlier complaint directly to the Southern Health Trust – and after spending hours sitting in A&E this week only to be sent home.
“It’s affecting every avenue of our life because Conan is just so ill and no-one’s helping,” said Corinne, in desperation, as she turned to Armagh I to publicly highlight the family’s plight.
A special brain scan was requested by the Royal Victoria Hospital in September last year but has yet to be carried out.
And it is now three years since Conan, who first displayed signs of seizure at 15 months, had an MRI.
“More than a year later, we still don’t have an appointment date,” said Corinne. “He has a very, very strange type of epilepsy, wherein he will seize but he’ll also hallucinate and see terrifying things and scream.
“He basically goes in and out of seizures, like back to back, but in between that he’s tortured with hallucinations. He’s stiffening and he’s scared.
“I think sometimes they don’t necessarily know what to do with his specific type of epilepsy, so they’ve done genetic testing and things like that. More recently, with all my drum-banging, there has been a bit of movement with things, but at the end of the day, no-one’s looked at the child’s brain since his first MRI when he was three years old.
“We’re waiting on a 3T MRI. If you’re going to have a neurological condition you need to look at the brain, and they just keep fobbing me off with a wee bit of medicine increased here or a psychology appointment there.
“But it’s like, no, we need the medical care, because the child’s distressed, pretty much every day, and terrified to go to sleep. He doesn’t even like sleeping at home anymore because he thinks that he has seizures because it’s our house. My mum gives us respite, one night a week, so he thinks if he doesn’t have a seizure there then her house is safer.
“He’s crying all the time. He’s now had to go back to Primary 2. His development is so affected by how many seizures he’s having. He was a child who was meeting all his milestones and now he’s a six-year-old boy who still needs help at the toilet. He’s just going back and back, because you can’t have that many seizures and be developing okay.”
When Conan first presented with seizures, it was initially diagnosed as parasomnia – akin to night terrors – and Corinne admits they felt “relieved”.
But, as time progressed, it was clear there was much more at play.
“They told us not to come back unless it happened during the day,” explained Corinne. “So for 18 months we were watching him having seizures and the child got no help, no anti-seizure medication.”
Eventually Conan was diagnosed with sleep-related hypermotor epilepsy.
But the family are still waiting for a requested MRI – which they want carried out under general anaesthetic to prevent him moving for a more accurate result – and further investigation to get to the root cause and determine what can be done to help him.
“The most seizures I’ve ever seen him have in a night is 38,” said Corinne. “The night before last he had 21 seizures in a row and two seizures earlier that day, and they basically very much just leave us to deal with it on our own.
“One of us has to sleep with him, obviously, at all times. I’ve got so used to dealing with Conan’s seizures. He can be face down in the pillow, not able to breathe, and he stops breathing sometimes during them too. He’s having a nosebleed, so there’s blood everywhere, and that child gets up and goes to school after that because he only had one?
“There’s two types, one where he just seizes, and he’s not really aware, but then there’s other ones when he is aware and he remembers all of them.
“It’s over a year now and he is continuing to have multiple cluster seizures. Since the 19th of January, until the night before last, he’s had 146 seizures, and they’re not sending him for a brain scan, and then they expect me to put that child in a uniform and send him to school.
“The child is lost and he knows he’s suffering. Conan remembers his seizures; the ones where he’s asleep, and he stiffens, and he seizes, he doesn’t remember, but the ones where he goes in those big clusters of 23 or 24, he will remember the things he sees. He remembers the hallucinations, so the next day then he’s fearful of this and asking us what’s happening.”
Corinne said Conan had been attending predominantly at the Blossom Unit at Craigavon Area Hospital, but they had been “fighting and fighting” to try and get a neurology appointment.
Now they await a requested 3T MRI scan but still cannot see any light at the end of the tunnel, despite saying that the Trust has since acknowledged there had been “missed opportunities in his care”.
“I just don’t understand. They can’t delay stuff like this,” said the perplexed parent. “The child’s missed education. He was taken out of nursery, he’s missed most of P1, most of P2. He went into P3 and has had to go back to P2. He has no real quality of life, because he struggles through every day, drugged up, and then terrified to go to bed.
“It’s just time now they actually start to do the genuine tests that are going to get the answers for what the care is that he needs.
“There is a potential for a genetic element to it, but no-one’s confirming one way or the other. This is the thing. All of these things are sort of investigated but not enough to give any answers. At the minute they’re just toying with medication, but he seems to get so long out of a medication and then it’s almost like he becomes immune to the medication, and then we get this kicking off again.
“He has a neurological condition. I want them to look at my son’s brain, I want them to see under anaesthetic if there’s anything in there, where it is, then I want them to tell us, with a wholehearted honesty, if it is genetic, if it’s a genetic reason, that it is medication resistant, if we’re not going to be able to have surgery, are we going to be able to have surgery? When can we have surgery? What is the timeframe for this? What is the plan?
“They can’t just leave us sitting with this anymore. We need to be able to take care of him, we need to be able to get him through this. But it shouldn’t be that as a mother, you get the help because you shout so loud, you should be getting help because it’s a child suffering.
“Conan is traumatised, as is his little brother, Lorcan, who’s five. The other night it was myself, and Conan and the little one, so I was with a five-year old and a six-year-old, doing 21 seizures while the other child’s crying the whole time. We’ve asked for help for him as well, but I think the psychological care is the thing they’re able to give us quicker, so that’s sort of what they’re focussing on after the complaint.
“They completely didn’t answer anything about the medical end that we need, because Conan needs his seizures reduced to keep him safe. We’ve done it all ways. I’ve been in ambulances, I’ve been in the hospital, and even in the hospital they didn’t know what to do with him.
“The emergency meds didn’t work. He was having 38 seizures in a row. The nurse was nearly standing crying with me. They can’t stop it for him so they need to go in and do the investigations, because they can’t just keep letting them go on. They’re taking years of his life that he’s never going to get back.
“This is a child’s life. They told me to take the monitor out of my room, that I was being a too over-protective mother, tried to make me make that child sleep on his own. That child has specifically sleep-related epilepsy and could have suffocated in his bed.
“They’re not registering what they’ve actually done to all of us psychologically. I get that there was a bit of an apology in the complaint’s reply, but not remotely about what they’ve actually managed to do to all our lives.
“The fear and the panic is just daily. Night-time in our house is never peaceful. It’s like, what’s coming? Conan will actually say to me, is the sun coming up, is the sun coming up? It’s just shocking and it doesn’t seem to matter.
“The people that deal with this directly, they’re kind, and they do what they can, but they seem to be at the limit of what they can do. Do they need us to travel? Do they need to send us somewhere? Do we need to go private? They can’t just let us keep suffering and potentially something goes wrong some night with Conan and then I lose my son.”
Corinne said she sat in A&E all day on Wednesday with Conan, who had suffered 23 seizures, and had hoped he would be admitted to hospital, but instead his medication was adjusted and they were discharged.
“We’re watching him go back-to-back screaming, seizing, and we know that we can’t even reliably ring an ambulance for help because they’ll take us there, leave us sitting in the corner, and eventually someone will just send us home because they don’t know what to do with us anyway.
“Yesterday they didn’t even take that child’s bloods. He is literally stopping breathing sometimes. There’s times when he screams at me, he’s screaming ‘mummy, mummy, papa’, because he can’t see us during seizures.
“I just don’t know why he’s not immediately into a machine to check him and why they’re not really searching the genetics more and why they’re not talking to us about surgery pathways, because we need to know if that’s even an option.
“All I think about all the time is one of these nights, is this what’s going to get him? We don’t sleep. The other night I literally just sat and watched him the whole time.
“We’re totally destroyed at this stage.”
