In response to criticism that epilepsy care for children has little impact, healthcare professionals and administrators have developed various service models and strategies to address perceived inadequacies.
Epilepsy is not a disease, it is a disorder. People who have epilepsy are fully capable of leading a normal life. Read on to find out more…
Epilepsy is a neurological condition that is estimated to occur in 0.5% to 1% of the population of any country. According to the Department of Neurology, Jinnah Postgraduate Medical Centre, Karachi, one in every hundred Pakistani has epilepsy and at least 5 family members are affected in some way or the other due to it. The condition is also twice as common in rural areas as compared to the urban. Epilepsy is a sudden surge of electrical activity in the brain that causes a temporary disturbance in the messaging systems between the brain cells.
Unfortunately, the condition has been stigmatised in the country due to misinformation. Recently, a press conference was held in a bid to create awareness regarding epilepsy at Najumuddin Auditorium at Jinnah Postgraduate Medical Centre (JPMC) to squash the certain stereotypes of the disorder. According to Prof Dr Hasan Aziz, “It is a common misconception among unaware people that an epilepsy attack is a work of some ‘evil spirit’ or ‘supernatural beings’, or that person can be cured by sniffing a shoe. It is not contagious and is rarely hereditary; and it does not affect your intellectual capabilities. A person can live their life normally if they take their prescribed medicines on time, take care of their diet and sleep.”
There have been many famed personalities like Newton, Tolstoy, Socrates, Da Vinci, to our very own Abdul Sattar Edhi, Nadia Jamil and Suhaee Abro, who are epileptic.
Nadia Jamil, actress and mother of two young boys, was diagnosed with epilepsy in 2011, and has not let that get in the way of her work, “As an actress I need my body to work and as a mother I always have to be energetic. Initially, there was a sense of panic and the limitations of my body hit me, like it would for a person with asthma or diabetes. But, medications have helped me. I cook, clean, shop for groceries, ride a bicycle, work and run after my boys without fear. Epilepsy can be handled with medications and a little care in terms of lifestyle – getting proper rest and full sleep. To anyone who has epilepsy, you are not sick, there isn’t anything that you can’t accomplish. It’s not a disease, it is a condition which can be controlled if taken care,” stated Nadia Jamil while talking to this scribe.
According to National Epilepsy Centre (NEC) at JPMC, in about 70 per cent of the cases, there seems to be no obvious cause of the condition. However, for the remaining cases, strokes, brain tumours, head trauma (such as occurring during a car crash), infectious diseases (for example: AIDS), congenital abnormalities (prenatal injury, or brain damage that occurred before birth), or development disorders (such as autism or neurofibromatosis) are some of the factors that increase the risk of epilepsy.
The key symptom of epilepsy is repeated seizures. One should immediately consult a doctor if it is a recurring matter. A person may experience convulsions with no fever, short spells of blackout, fainting spells during which bowel and bladder isn’t in control. The person may do unexplainable things such as suddenly become stiff, have bouts of blinking or chewing, or do repetitive or jerking movements.
For diagnosis, a person goes through a complete physical and neurological exam, and their clinical history is taken along with a detailed account of their seizure that occurred. Additional testing may include EEG (Electroencephalogram) that detects the brain’s electrical activity.
The epileptic seizures can be controlled with antiepileptic drug (AED) therapy. The doctor will prescribe the dosage according to several factors for a particular individual like age, gender, overall health and the severity of the seizures. So, it is mandatory to take the prescribed dosage with punctuality.
In some cases, if there is an underlying brain condition that is causing these seizures, surgeries can be recommended. And, if the AEDs don’t work, the next step could be surgery.
While one is still trying to control their condition, it is imperative to take certain precautions. An epileptic person should avoid all activities that can potentially put their lives at risk like riding or driving a vehicle, working in factories (like having to operate heavy or open machinery) or heights. Anything that involves swimming, working near an open flame should be done under supervision.
There are also certain triggers that can provoke seizures in people with epilepsy like missing medications, consuming recreational drugs and alcoholic beverages, lack of sleep and other drugs that may interfere with the prescribed medicines.
Do not panic: If you witness someone having seizures, it’s important for you to stay calm in order to help someone.
Protect the person from potential injuries: Help keeping them from falling and gently guide them to the floor. Remove any objects or furniture that may injure the person.
Place a pillow under their head: If they are already on the ground, turn them to one side and loosen the clothing around their neck. Place something soft under their head.
Don’t force anything: Do not forcibly open or put anything in mouth (water, spoon, cloth). You may end up hurting them and yourself.
Record everything: Record the event on your device to show it to the doctor. Pay close attention to the body movement during seizure, how long it lasted, how the person reacted after and possible injuries.
Posted Mar 9 2018 in Anti-epileptic drugs
Approximately 60-70% of people with epilepsy will have their seizures controlled with medication. But even when epileptic seizures are controlled with medication the drugs used may have unpleasant, unwanted side effects. Ideally what patients and clinicians are looking for is a drug which works effectively and has no down side. Now new research from the Australian National University aims to look at the molecular level to find a way of reducing negative side effects without reducing the drug’s efficacy. If you would like to read more about this study please click on the link here:
A new class of epilepsy drugs based on a marijuana ingredient could be become available in the United States as early as the second half of 2018 pending approval from the Food and Drug Administration.
GW Pharmaceuticals, the maker of the drug called Epidiolex, announced on Wednesday the promising results of a clinical study of the drug.
A group of 171 individuals were randomly assigned to either receive Epidiolex treatment or placebo. The participants were between 2 and 55 years old with a condition called Lennox-Gastaut syndrome. They were also suffering from seizures existing drugs cannot efficiently control.
The participants on average had tried and discontinued use of six anti-seizure treatments and were experiencing 74 “drop” seizures per month. This particular seizure involves the entire body, head and trunk, and often leads to fall and other injuries.
Results of the study, which was reported in the journal Lancet, showed that over a period of 14 weeks, 44 percent of the patients taking the drug saw significant reduction in seizures. The rate is significantly higher compared with the 22 percent in the placebo group. More of those who were given the experimental drug also experienced a 50 percent or greater reduction in drop seizures.
“LGS is one of the most difficult types of epilepsy to treat and the majority of patients do not have an adequate response to existing therapies,” said Elizabeth Thiele, from Harvard Medical School. “These results show that Epidiolex may provide clinically meaningful benefits for patients with LGS.”
Adverse events associated with use of the drug include diarrhea, decreased appetite, sleepiness, vomiting, and fever. Once given the go-signal to be marketed in the United States, the drug is intended to be used as a prescription drug to be dispensed by doctors.
“Add-on cannabidiol is efficacious for the treatment of patients with drop seizures associated with Lennox-Gastaut syndrome and is generally well tolerated. The long-term efficacy and safety of cannabidiol is currently being assessed in the open-label extension of this trial,” investigators wrote in their report.
GW Pharmaceuticals has not yet disclosed the pricing of the drug, but Justin Gover, GW’s chief executive officer, said that the company is already in talks with health insurers about coverage.
Last Updated: February 14, 2018.
Both focused attention and progressive muscle relaxation result in reductions in seizure frequency in patients with epilepsy, according to a study published online Feb. 14 in Neurology.
Sheryl R. Haut, M.D., from the Montefiore Medical Center in Bronx, N.Y., and colleagues randomized 66 adults with medication-resistant focal epilepsy to 12 weeks of either PMR with diaphragmatic breathing or control focused-attention activity with extremity movements.
The researchers found that seizure frequency was reduced from baseline in both treatment groups (PMR: 29 percent; P < 0.05; focused attention: 25 percent; P < 0.05). There was no difference between the two interventions in seizure reduction (P = 0.38), although PMR was associated with greater stress reduction compared to focused attention (P < 0.05). Daily stress was not found to predict seizures.
“These findings highlight the need for larger, individually targeted behavioral therapy trials to control seizures and improve quality of life in patients with epilepsy,” the authors write.
The compound, valproate, is also used for migraine and bipolar disorder, and doctors already advised against prescribing the medicine for pregnant women in France.
Updated: Feb 10, 2018 13:45 IST
An expert committee of Europe’s medicines watchdog recommended Friday that a drug used to treat epilepsy and linked to malformations in children not be used in pregnancy. The compound, valproate, is also used for migraine and bipolar disorder, and doctors already advised against prescribing the medicine for pregnant women in France. France’s medicines regulator, known by the acronym ANSM, asked the London-based European Medicines Agency (EMA) to conduct a risk review.
The EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) said in a statement Friday it was recommending that valproate not be used by pregnant women for any of the three medical conditions. For women suffering from epilepsy, however, it may be impossible for some to stop after becoming pregnant, it said. These may have to continue treatment, though with “appropriate specialist care”. The experts also advised against prescribing the drug for women “from the time they become able to have children”, unless using contraception.
The interest in cannabis-based products for the treatment of refractory epilepsy has skyrocketed in recent years. Marijuana and other cannabis products with high content in Δ(9) –tetrahydrocannabinol (THC), utilized primarily for recreational purposes, are generally unsuitable for this indication, primarily because THC is associated with many undesired effects. Compared with THC, cannabidiol (CBD) shows a better defined anticonvulsant profile in animal models and is largely devoid of adverse psychoactive effects and abuse liability. Over the years, this has led to an increasing use of CBD-enriched extracts in seizure disorders, particularly in children. Although improvement in seizure control and other benefits on sleep and behavior have been often reported, interpretation of the data is made difficult by the uncontrolled nature of these observations. Evidence concerning the potential anti-seizure efficacy of cannabinoids reached a turning point in the last 12 months, with the completion of three high-quality placebo-controlled adjunctive-therapy trials of a purified CBD product in patients with Dravet syndrome and Lennox-Gastaut syndrome. In these studies, CBD was found to be superior to placebo in reducing the frequency of convulsive (tonic-clonic, tonic, clonic, and atonic) seizures in patients with Dravet syndrome, and the frequency of drop seizures in patients with Lennox-Gastaut syndrome. For the first time, there is now class 1 evidence that adjunctive use of CBD improves seizure control in patients with specific epilepsy syndromes. Based on currently available information, however, it is unclear whether the improved seizure control described in these trials was related to a direct action of CBD, or was mediated by drug interactions with concomitant medications, particularly a marked increased in plasma levels of N-desmethylclobazam, the active metabolite of clobazam. Clarification of the relative contribution of CBD to improved seizure outcome requires re-assessment of trial data for the subgroup of patients not comedicated with clobazam, or the conduction of further studies controlling for the confounding effect of this interaction. (2017;7:61-76) […]
With just 28 days in February, this month’s Epilepsy News is with us a little earlier than usual.
If a significant event pops up in the final seven days of February this year, then I’ll try and talk about it in next month’s edition as well. But with topics of technology, treatment, campaigning and design involved today, I’ve got plenty of interesting stories to tell you about what’s been happening around the world with epilepsy.
Researchers in Melbourne recently became more excited about the advancement of new, seizure predicting technology. By recognising patterns in the brains electrical activity, algorithms have been trained to pre-empt epileptic seizures.
At St. Vincent’s Hospital at the University of Melbourne, senior researcher Dean Freestone, PhD, and chair of medicine Mark J. Cook, MD, have now launched a company called Seer Medical. Here the new technology can hopefully be pursued with patients implanted with it later this year.
Likely to be contained in a chip inside a wearable device like a wristband or bracelet, the new forecasting technology would probably work best for people who typically have seizures about once a week.
For me, this new technology sounds interesting. I have a seizure approximately once every two weeks and reckon it could become so useful for myself. However, if people have seizures once every hour, or if the seizures are too infrequent, researchers have stated that it is difficult to train the algorithms.
But by knowing when seizures are coming along, I can understand why people who have tested this technology have felt more comfortable doing everyday activities. After being tested, people also claimed to benefit from improved sleep and decision making too.
Knowing when my seizures were due would be a handy tool for me and the people who have to keep an eye on me when they occur. It’d give me the chance to put myself in safer places beforehand, and even find ways to prevent them.
Being designed in Australia, I only hope we don’t have to wait too long before we have some form of the technology made available in the UK.
Right now, epilepsy diagnosis can be completed with the use of various scans, including EEGs, CTs and MRIs. Although they work, these scans don’t give doctors much information regarding the type of issues their patients will be facing with their epilepsy.
However, genomics interpretation software company Congenica has now teamed up with FutureNeuro, an SFI Research Centre for Chronic and Rare Neurological Diseases. This new partnership is working on a programme that will give doctors a much easier way to make a diagnosis of genetic epilepsy.
With the use of genomics, doctors may now be able to get a better and quicker view of the many challenging possibilities of epilepsy. This would lead a way to start individualising treatment and prognosis in the clinic. All in all, the earlier diagnosis would see positive impacts on the patient and their family.
Speaking recently, Congenica’s CEO, Dr David Atkins said: “We are excited by what this collaboration could mean for patients and their families around the world. The types of genetic mutations that this project will focus on are thought to be at the root of as much as 40 per cent of childhood epilepsy.”
I don’t suffer from genetic epilepsy, but wish this new partnership well in finding what they need to bring better diagnosis to children who may gather the condition through their mother, father and other family members.
Back in September, I told the story of Alfie Dingley, a 5-year-old with epilepsy whose parents were due to take him to the Netherlands so he could receive cannabis oil treatment to stop his daily seizures.
After about five months, Alfie has now returned because he has no health insurance in another country. Now his parents are back in the UK, they hold a great passion for gathering their son a medical cannabis licence. However, their recent request was denied by the Home Office, who said the drug “cannot be practically prescribed, administered or supplied to the public”.
Alfie’s mother, Hannah Deacon, is clearly very much upset by the response. Right now, Alfie suffers from up to 30 violent seizures a day, but when receiving treatment in the Netherlands, he went for 24 days without a single attack.
Speaking on BBC News, Hannah told presenters that she wanted to speak to MP’s Amber Rudd and Jeremy Hunt, saying: ‘I want them to know my reality with my son in A&E every week, watching him have a seizure, watching him go purple; wishing that he will live.”
I know this isn’t positive news to tell my readers about. But it is another clear reason that I wish to raise awareness of epilepsy, and speak out for people with difficult health conditions.
Medical cannabis won’t just be useful for Alfie – it was recently made more legal to use in various states across the USA. It doesn’t just help people with epilepsy and will be helpful for many other people with various health problems in this country as well.
After struggling to stop up to sixty seizures occurring every day with conventional medication, five-year-old Leafy Liu now only suffers around four seizures a year. Her patterns have improved greatly with her new ketogenic diet, which has had her parents spending £1,200 and Leafy eating approximately 3000 avocados – at least two a day for the last four years.
The ketogenic diet was discovered by her parents Justin and Claire after their daughter first started having seizures when she was six months old. They were scared by her first seizure, which lasted for 25 minutes and led to her being taken to the hospital.
As time continued, Leafy’s seizures became more frequent, with 60 minor seizures sometimes occurring in a day, and her longest seizure lasting for around 45 minutes. Because of the side-effects involved with anti-epileptic drugs, her parents searched online for an alternative solution to their daughter’s issues.
Here they came across the ketogenic diet and were quickly stunned by how effective it was. High in fat and low in carbohydrates, burning fat for fuel is said to be better for the brain. Within two days, they started to see big changes occur, and Leafy moved quickly from having up to two major seizures a week to having just one seizure a month.
Although a lot of fruits are avoided with the ketogenic diet, it seems to have started their daughter Leafy’s passion for avocados.
Speaking from their home town of Loughborough, father Justin said “The avocado has been a real staple; she absolutely adored it from the word go.
“We’ve spent a fortune buying them, but it’s been worth it. They are wonderful.
“It’s amazing. When I see what other children are eating for lunch, and compare it with what Leafy has, I think it’s so much healthier this way.
“When she was at her worst, I could never have envisioned that avocado would be the thing to help her through, but that’s how it’s turned out.
“We’re just so thankful that we discovered the diet when we did because it’s changed all of our lives for the better.”
Out of all the individuals this month, I’ve been most impressed by the poster design skills of 18-year-old Thomas Bell, who suffers from epilepsy, dyspraxia and hemiplegic migraine. Tom was born with epilepsy, but after having to live with all of his invisible health conditions, he’s designed his poster campaign through Fixers, the national charity that looks to give young people a voice.
As a whole, Tom intends to shine a light on invisible conditions. Although better controlled now, Tom used to have to manage migraines as often as twice a month. Living with epilepsy, Tom was bullied by his peers in school, who used to flash lights in his eyes and say “I want to see you have a fit.”
He believes the reason for them doing this was because his conditions are invisible, and they didn’t take them seriously. These frustrating times have led Tom to create his poster, which involves a cartoon of himself explaining epilepsy, dyspraxia, hemiplegic migraines, and gives further information about why he’s designed it.
The poster’s heading states ‘Not all conditions are visible. If you could see my pain maybe you’d understand’.
Since they’ve been created by Fixers, Tom has said that he’s happy with how the posters have turned out, and now wants to campaign with them in local schools to drive home the message.
This month has seen the inclusion of mainly positive news stories. People and companies mentioned have impressed me with the way they’ve exploited their efforts to improve epilepsy in different ways.
Right now, I only hope to keep an eye on the projects that are currently being developed, so I can take advantage when they come along to be beneficial to myself and others in the future. As well as that, the story of Alfie Dingley’s difficult life makes me want to play a part in getting cannabis oil treatment legalised in the UK.
The poster brought forward by Thomas Bell shows that he’s got similar interests to me too. He’s only 18, and I don’t want to push him into any career movement – but if I can give him a helping hand with his campaign, I wouldn’t turn it down.
UC San Diego Health now offers patients with epilepsy another non-pharmacological way to treat seizures. For the more than one million individuals who live with uncontrolled seizures despite taking medications, UC San Diego Health recently began offering the first and only FDA-approved brain-responsive neurostimulation (RNS) system designed for the treatment of refractory epilepsy.
“This device is approved for use in patients who have seizures coming from up to two different locations in the brain,” said Jerry J. Shih, MD, epileptologist and director of the Comprehensive Epilepsy Center at UC San Diego Health. “When unusual brain activity is detected, the neurostimulation device sends brief painless electrical pulses with the goal of disrupting the emerging seizure and to normalize brain waves.”
Shih added, “This device provides another treatment option for patients who were previously not candidates for traditional surgery because the seizure focus was in or near important brain structures controlling memory, language or movement.”
“In clinical trials, patients treated with this device experienced substantial seizure reductions in the first year that continued to improve over time,” said Sharona Ben-Haim, MD, neurosurgeon at UC San Diego Health. “The device continuously monitors and detects the patient’s unique brain activity, allowing us to personalize treatment for each individual.”
Epilepsy is a neurological condition in which patients experience seizures, sudden surges of electrical activity in the brain. Symptoms range from brief staring spells to uncontrollable limb movements. About one in 26 people in the United States will develop a seizure disorder. Treatment with medications can control seizures for 60 to 65 percent of patients, but 35 to 40 percent of patients continue to have seizures, affecting their quality of life.
Called the RNS System, the device is the first and only closed-loop, brain-responsive neuromodulation system. The neurostimulation system consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. The system comes with a remote monitor that patients use at home to wirelessly collect information from the neurostimulator and then transfer it to a patient data management system.
The patient’s neurologist can log into this system at any time to review accurate, ongoing information about the patient’s seizure activity and treatment progress. This helps physicians learn more about their patients’ seizures and improves patient care.
The RNS System was developed by NeuroPace, Inc. in Mountain View, CA. The system was approved by the FDA in November 2013. More than 1,300 patients have received the device nationally.
The Comprehensive Epilepsy Center at the UC San Diego Health Neurological Institute is the only nationally designated Level 4 Epilepsy Center in the region. It offers the latest technological advances in diagnostics, medical therapies, surgical procedures and clinical trials.
The epilepsy team includes epileptologists, neuropsychologists, neuroradiologists, epilepsy neurosurgeons, EEG technologists, clinical nurse specialists, and researchers.
To learn more about epilepsy treatment options at UC San Diego Health, please visit health.ucsd.edu/specialties/neuro/specialty-programs/epilepsy-center or call 858-657-7000.