Parents describe being on 'constant watch for seizures' raising child with Dravet Syndrome
Lynda Davies, 38, and husband Thomas, 40, live with their three children in Port Erin on the Isle of Man.
Seven-year-old Lyidan is the only child on the island known to be diagnosed with Dravet Syndrome.
Lynda said: "His worst days are very long. He doesn't sleep so he might sleep for an hour all day and that is it, and then you're on constant watch for seizures."
Lyidan had his first seizure at eight and a half months old.
At 10 months old, a third prolonged seizure resulted in him being induced into a coma.
He was blue lighted to hospital at least 50 times in just the first 12 months of his life and was diagnosed with Dravet Syndrome just before his first birthday.
Lynda said: "At its worst it's watching your child turn blue, and having to be brave enough to administer his rescue medication". As well as still having frequent seizures, Lyidan has delayed development, which affects his speech, and is unsteady on his feet, all of which are part of how he is affected by Dravet Syndrome.
Lynda said: "A lot of Lyidan's triggers are basic life so temperature control he struggles with - excitement, tiredness - everything that would come with just being a child.
"He can be playing and the second he goes quiet he's not breathing, he goes blue and he needs rescuing".
CEO of Dravet Syndrome UK, Claire Eldred, explains the difficulties of living with the condition.
Dravet Syndrome is a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties.
It occurs in around 1 in 15,000 live births in the UK, and it is not uncommon for individuals to have multiple seizures day and night, in some cases hundreds.
There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
Claire Eldred says "It is quite common for there to be a co-diagnosis of autism or ADHD, so it has a huge impact on every day life.
"Sadly there is also a higher risk of death with Dravet Syndrome than with other epilepsies so that is really scary for parents, it also means these children can never be left alone, so it is a case of 24/7 monitoring and that lasts for a lifetime".
The Davies family are working to raise awareness of Dravet Syndrome and have taken part in a challenge to run 5 kilometres every day for a month.
Thomas says "It's important for me to get the word out there, we felt very alone at first and that's why we want to raise awareness for the charity and the message is, there is always help out there so talk to somebody".
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
BBC News
4 hours ago
- BBC News
Instagram sisters from Birmingham raising neurodiversity awareness
Two sisters have been supporting people living with neurodiversity and helping educate others through their new training company. Iveta Pudilova, 23, discovered she was neurodivergent after sister Vera was diagnosed with autism."I grew up non-verbal. I couldn't speak until I was about five years old and even now I experience verbal shutdown. So verbal communication can be a really difficult challenge, Iveta said. In 2019, Vera started documenting her experiences through drawings and reflections on Instagram. Iveta helped and the Birmingham sisters went on to found the National Neurodiversity Training company last year. By May, the company had delivered neurodiversity training to seven organisations and 350 people, helping them to understand how to better support is an umbrella term that includes a number of conditions including ASD, attention-deficit hyperactivity disorder (ADHD) and dyslexia. Iveta told the BBC her sister Vera's Instagram reflections were not intended to go viral, but her take on life soon gained traction. She explained her sister is "a very creative person" who made "content illustrations about her experience of being diagnosed... to connect with other autistic people". Iveta joined her and added: "We started an e-commerce [initiative], selling communication products like badges and cards, because a lot of neurodivergent people are non verbal." 'More productive' Badges and cards have helped neurodivergent people express themselves in public. One design reads: "I wear noise-cancelling headphones but I can still hear you."Iveta said they started e-commerce work "to empower other neurodivergent people".However, she added "the lack of neurodiversity awareness and support is impacting everyone, including companies, and so we transitioned to delivering neurodiversity training". Their company now works with organisations including the NHS and is behind training delivered in tech firms, universities and local project, in partnership with Birmingham Newman University and the NHS, involved training psychological and wellbeing practitioners to better support autistic patients. 'Looking to leave' "What we found is that neurodiverse teams are about 30% more productive when they have the right support," Iveta said. "But 50% of neurodivergent staff are... looking to leave their employer because of a lack of support."She said in the work with the NHS, they addressed "diagnostic bias", which she explained was essentially when a practitioner diagnosing someone "might have personal biases". The company was invited to deliver staff training "on recognising their own biases, addressing them, but then also tailoring their therapy services and support to their autistic patients". Iveta added: "In the last year we've seen kind of the corporate world take up neurodiversity a lot more because there's more demand both internally, and [from] society pressures." Follow BBC Birmingham on BBC Sounds, Facebook, X and Instagram.
BBC News
4 hours ago
- BBC News
The world is getting hotter – this is what it is doing to our brains
As heatwaves become more intense with climate change, scientists are racing to understand how extreme heat changes the way our brains work. When Jake was five months old, he had his first tonic-clonic seizure, his little body stiffening and then jerking rapidly. "It was extremely hot, he had overheated and we witnessed what we thought would be the scariest thing we would ever see," says his mother, Stephanie Smith. "Unfortunately, it wasn't." Seizures began to crop up often in hot weather. As soon as the stifling, humid days of summer would arrive, the family would resort to all kinds of cooling methods and a fierce battle to keep the seizures at bay would ensue. Following a genetic test at the age of 18 months, Jake was diagnosed with Dravet Syndrome, a neurological condition that includes a form of epilepsy and affects around one in 15,000 children. Seizures are often accompanied by intellectual disability and a range of comorbidities such as autism and ADHD, as well as difficulties with speech, mobility, eating and sleep. Heat and sudden temperature changes can bring on a seizure. Jake is now 13 years old, but has endured countless seizures with the turn of the weather, his mother says. "Increasingly hot summers and heatwaves are adding to the burden of living with this already devastating condition," says Smith. Dravet Syndrome is just one of many neurological diseases that are exacerbated by higher temperatures, says Sanjay Sisodiya of University College London and a pioneer in the field of climate change's impact on the brain. A neurologist who specialises in epilepsy, he frequently heard from patients' families that they had more troubles during heatwaves. "And I thought to myself, of course, why shouldn't climate change also affect the brain? After all, so many processes in the brain are involved in how the body copes with heat." As he dug into the scientific literature, he discovered a range of neurological conditions that are made worse by rising heat and humidity, including epilepsy, stroke, encephalitis, multiple sclerosis, migraine, along with a number of others. He also discovered that the effects of climate change on our brains are already becoming visible. During the 2003 European heatwave, for example, about 7% of the excess deaths involved direct neurological problems. Similar figures were also seen during the 2022 UK heatwave. So, as the world warms due to climate change, what can we expect the effect on our brains to be? The human brain is, on average, rarely more than 1C (1.8F) higher, on average, than our core body temperature. Yet our brains – as one of the more energy-hungry organs in our bodies – produce a fair amount of their own heat when we think, remember and respond to the world around us. This means our bodies have to work hard to keep it cool. Blood circulating through a network of blood vessels helps to maintain its temperature, whisking away excess heat. This is necessary because our brain cells are also extremely heat sensitive. And the function of some of the molecules that pass messages between them are also thought to be temperature dependent, meaning they stop working efficiently if our brains get too hot or too cold. "We don't fully understand how the different elements of this complicated picture are affected," says Sisodiya. "But we can imagine it like a clock, where all the components are no longer working together properly." Although extreme heat alters how everyone's brains work – it can, for example, adversely affect decision making and lead to people taking greater risks – those with neurological conditions are often the most severely affected. This is for many reasons. For example, in some diseases, perspiration may be impaired. "Thermoregulation is a brain function and can be disrupted, if certain parts of the brain are not functioning properly," says Sisodiya. In some forms of multiple sclerosis, for instance, the core body temperature appears to be altered. In addition, some drugs that treat neurological and psychiatric conditions such as schizophrenia affect temperature regulation, leaving those taking them more vulnerable to heatstroke, or hyperthermia as it is known medically, and at a greater risk of heat-related death. Heatwaves – and elevated nighttime temperatures especially – can affect people's sleep, affecting our mood and potentially worsening the symptoms of some conditions. "For many people with epilepsy, poor sleep can increase the risk of having seizures," says Sisodiya. Evidence suggests that hospital admissions and mortality rates among people with dementia also increase during heatwaves. Part of this may be due to age – older people are less able to regulate their body temperature – but their cognitive impairment may also mean they are less able to adapt to extreme heat. They may not drink enough, for example, or forget to close the windows, or go out into the heat when they shouldn't. Rising temperatures have also been linked to an increase in stroke incidents and mortality. In one study that analysed stroke mortality data from 25 countries, researchers found that out of 1,000 deaths from ischemic stroke, the hottest days contributed two excess deaths. "That may not seem like a lot," says Bethan Davies, a geriatrician at University Hospitals Sussex, in the UK. "But given that there are seven million deaths from strokes a year worldwide, heat may well be contributing to over 10,000 additional stroke deaths per year." She and her co-authors warned that climate change is likely to exacerbate this in years to come. A disproportionate share of the burden of heat-related stroke will be in middle- and low-income countries, which are already most affected by climate change and experience the highest rates of stroke. "Rising temperatures will exacerbate health inequalities both between and within countries and social groups," says Davies. A growing body of evidence suggests that older people as well as those with a low socioeconomic position are at an increased risk for heat-related mortality. A hotter world is also harming the neurodevelopment of the very youngest. "There is a link between extreme heat and bad pregnancy outcomes such as premature births," says Jane Hirst, professor of global women's health at Imperial College London in the UK. One recent systematic review of the scientific research found that heatwaves are associated with a 26% increase in preterm births, which can lead to neurodevelopmental delays and cognitive impairments. "However, there is a lot we do not know," adds Hirst. "Who is most vulnerable and why? Because clearly, there are 130 million women who have babies every year, a lot of them in hot countries, and this does not happen to them." Excessive heat due to climate change may also put additional strain on the brain, leaving it more vulnerable to damage that can lead to neurodegenerative diseases. Heat also affects the barrier that normally protects the brain, making it more permeable and increasing the risk that toxins, bacteria and viruses can cross over into our brain tissue. This could become more important as temperatures increase, as so too will the spread of mosquitos that transmit viruses that can cause neurological disease, such as Zika, chikungunya and dengue. "The Zika virus can affect foetuses and cause microcephaly," says Tobias Suter, a medical entomologist at the Swiss Tropical and Public Health Institute. "Rising temperatures and milder winters mean that the mosquito breeding season begins earlier in the year and ends later." (Read David Cox's story on how the US's mosquito season is already changing.) Heatwaves are capable of influencing a whole range of factors, from the electrical firings of the nerve cells to suicide risk, climate anxiety and even the stability of medication for neurological conditions. But exactly how rising temperatures affect our brains are still being investigated by scientists. Heat affects people in very different ways – some thrive in hot weather, others find it unbearable. "Different factors might be relevant for this differential sensitivity, and one of them may be genetic susceptibility," says Sisodiya. Genetic variants could influence the structures of proteins that might render some people more vulnerable to the impacts of climate change. "There may be thermo-latent phenotypes that will only become apparent when those environmental pressures are sufficient to bring them out," he says. "What we're seeing today in people with neurological disorders could become relevant for people without neurological disorders as climate change progresses." There are still other questions that remain to be answered too. For example, is it the maximum temperature, is it the length of a heatwave or the nighttime temperature that has the greatest impact? It may well differ for each person or by neurological condition. But identifying who is at risk and why will be crucial to developing strategies to protect the most vulnerable. These could include early warning systems or insurance to compensate day labourers for lost wages due to extreme heat. "The era of global warming has ended, the era of global boiling has arrived," UN Secretary-General Antonio Guterres announced, when July 2023 was confirmed to be the hottest month on record. Climate change is here and it is intensifying. The era of the hot brain is just beginning. -- For trusted insights into better health and wellbeing rooted in science, sign up to the Health Fix newsletter, while The Essential List delivers a handpicked selection of features and insights. For more science, technology, environment and health stories from the BBC, follow us on Facebook and Instagram.
Daily Mirror
8 hours ago
- Daily Mirror
Psychiatrist warns 'leg bouncing' could be sign you have undiagnosed condition
More than 2 million Brits have undiagnosed ADHD - but as it can be hard to identify in adults, many people may live with it which could then lead to various challenges An estimated 2.25 million Brits have undiagnosed ADHD - and this could lead to various challenges for them in their daily lives. Not only this but studies suggest around 25% of adults suspect they have attention deficit hyperactivity disorder (ADHD) but a very small percentage of those actually seek professional evaluation. ADHD UK reports "people with ADHD show a persistent pattern of inattention and/or hyperactivity–impulsivity that interferes with day-to-day functioning and/or development" . To help you recognise key signs, psychiatrist Ahmed Hankir, who is known as @proahmedhankir on social media, has taken to TikTok to share common signs seen in adults. He said: "ADHD isn't just a childhood condition - and in adults, the symptoms can be a lot more subtle. Clinically, ADHD is grouped into three core symptom clusters inattention, hyperactivity, and impulsivity." Breaking down the "five real signs you might notice in adulthood", he said: "Sign one - restlessness or difficulty relaxing (hyperactivity). "You might feel constantly on edge or like you can't switch off -even when sitting still. Your leg's bouncing, your mind's racing, and relaxation feels impossible." For sign two, he spoke about a compulsion to interrupt others or finish their sentences - classifying this as impulsivity. He added: "It's not that you're rude - you just blurt things out before thinking, or cut people off without meaning to. You realise it afterwards, but in the moment it feels automatic." For sign three, he says people with ADHD tend to make rash decisions, describing this as impulsivity. "You might suddenly change jobs, book a trip, or make a huge purchase without fully thinking it through," he added. "Later, you're left wondering, 'Why the hell did I do that?'" He added: "Sign four - difficulty paying close attention to details (Inattention). You miss things – important things. Like appointments, deadlines and meetings. Forms? Emails? They become a blur. It's mentally exhausting." Finally, he says the fifth sign to watch out for is frequently starting tasks but not finishing them, saying this shows both inattention and impulsivity. He added: "You start one task, then jump to another, and another... and end up with five open tabs and nothing finished. It's not laziness – it's how your brain processes attention and motivation. "Just because you relate to some of these doesn't mean you have ADHD. But if they're persistent and impact your daily life, it's worth speaking to a mental health professional for a formal assessment." If you suspect you have ADHD, visit your GP for an assessment. ADHD UK have put together an at-home test and you can share the results with your GP.
