What Have We Learned About Epilepsy This Year?

Joe Hage

🔥 Find me at MedicalDevicesGroup.net 🔥

April 2019

5 min reading time

Last year I wrote a post entitled “When Abby died.” It relayed how my unlucky friend Paul’s daughter was the “one” of the estimated 4,500 children stricken with a fatal epileptic seizure, now almost 11 years ago.

Knowing as little as I do about the disease, I asked the group, “Who in our Medical Devices Group community is working on epilepsy devices (or knows someone who is) and can comment on progress we’re making?”

Among the responses came from Benjamin Joy, whose son uses an Apple Watch equipped with SeizAlarm, an app to alert emergency contacts when seizure-like motion is detected.

Dermot Walsh wrote, “My daughter had epilepsy after a stroke as a toddler.” They performed a hemisoherectomy and partial disconnect. He says, it “completely cured the epilepsy and she has been seizure free for over 20 years.”

I had to look up “hemispherectomy,” a “very rare neurosurgical procedure in which a cerebral hemisphere (half of the brain) is removed, disconnected, or disabled.”

Nick Schmansky‘s company CorticoMetrics is working on software that aids a radiologist in finding cortical dysplasias in MRI images of the brain, he said.

Teresa Prego is a former Medtech Surgical/Zimmer Biomet Robotics (ROSA for neurosurgery) employee and a parent of a 23-year old with intractable epilepsy. Teresa says, her daughter used ROSA for a stereo-electro-encephalography (yes, I had to look that up also) to map seizure origins and determine if an RNS might work. It was minimally invasive, which was made the surgery something her daughter would consider.

An innovative technology like RNS takes time and patience. Adjustments to the neurostimulation are made at intervals, so progress can be frustratingly slow. On the patient side, we can’t see the data, so we don’t have insight into what’s happening.

We can see EEG data the device captures when we have office visits. This really appears to be a technology where telemedicine could apply.

Access to neurologists who have used/understand RNS is still limited to relatively few centers. There’s a lot to learn about optimizing treatment.

Bill’s niece is three-years old. She had an ablation at the Epilepsy Center at Texas Children’s Hospital. He anonymously shared,

The seizures are now less frequent, and while they appear more violent, they are “better,” and touch a different area of the brain. The seizures found a new pathway when the ablation stopped the others.

The plan is to implant a modulator in the skull. They offered to do it, but she would be the youngest patient to do it. The previous youngest was 11.

Last year, Joe Moore wrote in, “Our 31-year-old son is on his 3rd vagus nerve stimulator (VNS) from LivaNova (formally Cyberonics). It’s been a game-changer for his quality of life (and ours)! Yesterday he shared,

We experienced a bad seizure; it happened in the morning (unusual). He went hit the kitchen counter on the way down. When I heard Will yell, he was having a grande mal seizure, face down with blood pooling under his head and a tooth on the floor.

We go through life knowing there is a one-in-20 chance he won’t survive a seizure. For most families it happens at night, and the official cause if death is ‘natural causes.’ Adults don’t die from epilepsy, they just don’t wake up.

My wife slept by his bed for 3 weeks, and wouldn’t leave his side. When he complained she was freaking him out, she slept on the floor outside his bedroom door. We never told him what happened, he still doesn’t know how close things came. He suffered an orbital fracture and lost two teeth. If the seizure occurred at night, he would of been another statistic.

Tell people not to suggest treatments they read about on the internet to parents – as if we haven’t explored every possible option. Epilepsy is a generic term for seizure disorders caused by brain damage. Every situation, every treatment may differ, but every parent is the same. We love our children, and we do everything we can to the best of our ability.

Medibiotics’ CEO Robert Connor can use your help on his concept. He shares this 14-page PDF for your review. 😊

Bob explains medical and engineering evidence suggests epileptic seizures can be detected (even predicted) using EEG sensor data, but the data generally comes from complex arrays of wet electrodes, impractical for wearing during the day, adding,

Medibotics is working on integrating dry EEG sensors into eyewear with the long term goal of real-time (or close to it) detection and ideally prediction of seizures.

This is part of an overall trend toward convergence of med tech and wearable tech, which I think may transform health care. It could be a future breakthrough for epileptics whose conditions are not well controlled by pharma.

Bob welcomes your input and connections.

Thanks to everyone who gave us an update. There’s more at the original article, “When Abby died,” and I encourage your further comments here.

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Let’s talk about next year’s 10x Medical Device Conference

Two weeks out, you know if you’re coming but details here, with discounts for students, select startups, and the unemployed.

For next year, apply to speak. We’ll be in San Diego again. Write me if you have a preference among these dates: April 21-23, April 28-30, and May 5-7 (all Tuesday through Thursday), 2020.

For this week’s clip, a tense scene from The Social Network, shown at our 2016 event.

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Thank you for being part of our Medical Devices Group community!

Make it a great week.

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Joe Hage
Founding Principal, Medical Devices Advisory Group

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Posted by Joe Hage

Asked on April 30, 2019 7:44 am

723 views

	Private answer James Lee Please also look at there Neuropace RNS. https://www.neuropace.com Disclosure: I do not work currently work for a medical devices company but I was part of the design team for the first generations of this device about 15 years ago. I am an electrical engineer who has designed components, sensors and systems in medical devices over my career, and mostly have a heart for patients. I understand that there have been good clinical outcomes with the device and there was even a new story about it on the Boston local news: https://www.boston25news.com/news/implant-device-decreasing-frequency-of-seizures-in-mgh-patients/551720127 Marked as spam Report spam
	Private answer Nick Schmansky Thank you for mentioning our work. CorticoMetrics continues to work on our software tool to aid identification of FCDs, as well as working the regulatory process. The feedback from radiologists has been quite positive. Marked as spam Report spam
	Private answer Marc Fine An Israeli company developed a non-invasive treatment for Parkinson's tremor. https://www.timesofisrael.com/israeli-startup-uses-ultrasound-waves-to-reduce-parkinsons-tremors/ Marked as spam Report spam
	Private answer Christine Zomorodian Back in the mid-90s, I was lucky enough to be one of eight employees at a startup in Redmond called FRESA Biomedical, headed by a fellow of the Cleveland Clinic. We developed and executed assays (enzymatic, chemical and mineral) to determine blood levels of physiologic predictors of response (levels of free-radical scavengers) to epileptic seizure drugs. Some of those drugs (valproic acid, in particular) had a high rate of extreme adverse events (liver failure). We developed profiles that were able to accurately predict which patients were most or even somewhat “at risk” for these outcomes and recommend a therapeutic intervention prior to drug administration. We worked with the biggest pediatric epilepsy centers around the nation. That intervention was nutritional, therefore not terribly lucrative for potential investors. We didn't make it, but the science did. Think: neurologic oxidative stress. Why am I describing all of this? Because I am a big believer in cross-disciplinary problem solving. I fervently hope that those folks pioneering devices for epilepsy monitoring or interventional solutions are in communication and collaboration with those on the drug and nutrition therapeutics side. There are recent advances in genomic variant data (that is resulting in variant reclassification for a significant percentage of patients). There is very promising research in cannabidiol related to Dravet and Lennox Gastaut-type seizures (the Brits are ahead of us on this; with draft physician guidance, while we are squabbling over 'positions'). Both the US and UK epilepsy societies describe a highly-structured ketogenic diet (anti-inflammatory, anti-oxidant pathways and mitochondrial health) as being a good adjunct. There are some related drugs (tripterene celastrol and edaravone) showing a lot of promise. Both the societies have great websites, by the way. I find that the Johns Hopkins Epilepsy Center website is an excellent resource for patients and families. Sometimes “it takes a village.” For confounding and devastating conditions such as epilepsy, that seems to be the rule rather than the exception. I hope that the researchers here are involved with the epilepsy societies, that they are collaborating and communicating with researchers and entrepreneurs in the other disciplines. My connections are no longer fresh, but I would be happy to Marked as spam Report spam
	Private answer Joe Hage from Eliana Saavedra Grateful for Medical Devices advisory groups! Marked as spam Report spam
	Private answer Joe Hage from Betsy Gordon I have found a way (over the last 20 years) to cure myself of left temporal lobe epilepsy. It has been a journey utilizing several healing methodologies (no pharma involved). Too lengthy to type, and I am happy to share my success story with interested parties. Feel free to contact me through my website. - http://www.xrayelvs.com I am happy to have a 1-1 conversation... And, I have decided to add my journey with epilepsy on my blog page over the weekend...so feel free to visit my website>betsy's blog Marked as spam Report spam
	Private answer Joe Hage mfrom Hanne Vendelbo Grateful for science and everything done to assist people with medical challenges and their relatives to live as normal as possible 🙏 Marked as spam Report spam
	Private answer Joe Hage from Joe Moore This was just published. Research at Tell Aviv University that explores 'resetting' the firing rate that triggers seizures in intractable epilepsy. https://www.cell.com/neuron/fulltext/S0896-6273(19)30334-4 Marked as spam Report spam
	Private answer Joe Hage from Reza Memarizadeh Thank you so much for sharing! Marked as spam Report spam
	Private answer Joe Hage from Lisa M Boucher As a brain cancer survivor, & long time epilepsy patient, I would welcome a cure. However, I am grateful my seizure disorder isn't as devastating as many others. Medication mostly works & I'm generally seizure-free. It's the unpredictability that presents a problem. I feel for those who are unable to lead a normal life, as I have been able to do. Relief from this awful neurological affliction would be wonderful for all who suffer from it. Marked as spam Report spam
	Private answer Joe Hage from Betsy Gordon Hi Lisa, I have some medical articles coming up to be written and would like to have a conversation with you about these projects. Also, I have cured myself of left temporal lobe epilepsy, we can also discuss that as well, if you like. M: (407) 341-6766 Give me a jingle in the next couple of days - sound good? M: (407) 341-6766 (in FL - Eastern Time Zone) Marked as spam Report spam
	Private answer Joe Hage from Lisa M Boucher Absolutely! Marked as spam Report spam
	Private answer Joe Hage from Nikita Swain Me too Marked as spam Report spam
	Private answer Joe Hage from NAZAKAT ALI I interested Marked as spam Report spam
	Private answer Joe Hage from Monir El Azzouzi I interviewed @Sean hamilton on my podcast who has epilepsy and who created a medical device to monitor it. Https://podcast.easymedicaldevice.com/16 Marked as spam Report spam
	Private answer Joe Hage Thank you for sharing it here Monir El Azzouzi Marked as spam Report spam
	Private answer Joe Hage from Melissa Hurley My heart monitor can be used to find the trigger for epilepsy in human beings! Soon! Marked as spam Report spam
	Private answer Joe Hage from Ajay Kudale Melissa Hurley Best luck! Marked as spam Report spam
	Private answer Joe Hage from Melissa Hurley Thank you so much! I was actually hoping to study abroad for Women's Health and Stress Management in Pune this year, but I must wait until availability for the program for next year! I can't wait to bring this healing mechanism into our world! Marked as spam Report spam
	Private answer Joe Hage from Kym Brooks We have been working with cannabis cream that is helping with seizure activity. Marked as spam Report spam
	Private answer Joe Hage from Joe Moore We tried CBD oil without any noticeable difference in seizure activity. Our neurologist has had some success in using it, but limited to children and younger patients. Marked as spam Report spam
	Private answer Joe Hage from Kym Brooks Joe Moore Please Joe reach out to us at cannaphyll to talk with about the cream and our results with cbd and thc low dosages. Marked as spam Report spam