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Sudden unexpected death in epilepsy strikes one in 4,500 children a year. About ten years ago now, my dear friend Paul’s 16-year-old daughter Abby was that one.
On her tribute page it says, “She took it upon herself to hug anyone who looked like they needed it whether they knew it or not.” I asked Paul about his experience with epilepsy and he wrote, “Not sure we could provide much insight other than not to believe the ‘gold standard’ such as it is. We had the best physicians anywhere, department heads at Cleveland Clinic and Akron Children’s treating Abby for 10 years and we knew almost nothing till we lost her. The number of people suffering is more than most diseases but less is known about epilepsy. We dealt with the disease, and the side effects of the treatments, for 10+ years, yet we never believed we could lose her. I always hope that someday MRI could acquire images fast enough to allow us to find and fix the defects where they begin, the first synapse misfiring and ‘short circuiting’ the hemisphere, if not the entire brain.” +++ 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? On the epilepsy.com site, I learned: • Responsive Neurostimulation gives treatment only when it detects unusual electrical activity that can lead to a seizure. NeuroPace markets these. I’m out of space (thanks, LinkedIn, grr) but you can learn about seizure-alerting and investigational-stage devices at https://epilepsy.com +++ Make it a great week.
Joe Hage Marked as spam
 Posted by Asked on January 30, 2018 9:47 pm
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Joe Hage
from Mark C. Adams, MBA
Medical Device Leader, Executive It's just sad when a child and their parents have to deal with death it's unnatural. Even more so when the cause is a disease no longer on the forefront of technological advances Have we become that jaded as an industry? I hope not. Marked as spam
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Joe Hage
from Jessica Ching
Chief Marketing Officer, Disruptive Health Innovator & Speaker If you haven't seen this article on progress in neurology, it's worth reading. If only we could speed progress and bring these benefits to those who need it, sooner. Much sooner: http://www.apnewsarchive.com/2018/Researchers-developing-deep-brain-implants-to-deliver-medications-with-pinpoint-precision/id-9760860d3d9a42598e09c4c3e6783122 Note: as a consumer health champion, I am looking into mirroring this concept of direct, very fine tuned medication delivery via unconventional means. I'm hoping to better manage my own health by leveraging existing devices and using the "now" lab: me Marked as spam
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Joe Hage
from Joe Moore
National Sales Director (continued)...In fact the VNS made such an impact, when I lived in Houston I reached out to the company and begged to work there so I could impact other families the same way ours was, but never received any response. Epilepsy deaths are hard to track. The risk is always that after a seizure the the neural pathways that control breathing don't re-start. We have been fortunate in that this has happened only once to us, and I was home when it happened and was able to administer CPR until his brain kicked in. Commonly, seizures increase evening/night, so an epilepsy death is like SIDS in an infant. the person goes to bed and just doesn't wake up. The assumption is the death is direct result of the seizure, but since it happened in the middle of the night there is no way to be certain, so the cause is listed as 'unknown'. Recently companies have developed beds with sensors that alert the family when seizures occur during sleep. More recently a company developed a wearable... Marked as spam
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Joe Hage
from Joe Moore
National Sales Director Joe Hage I spoke to that company a couple years ago. I believe it will provide some patients a greater degree of freed and their families some peace of mind. It detects a seizure and sends a text to assigned phones. Assuming it works as claimed, it should family members to sleep a little better. Marked as spam
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Joe Hage
from Steve Anderson
CEO at Preceptis Medical Joe, thanks for bringing this to the community. Great topic and horrible heartbreaking disease. My son has refractory epilepsy, secondary to spina bifida and hydrocephalus. His is mostly controlled but he still has about 5 seizures/month. The neurologists do the best they can, but we are in the stone age of understanding this complex disease and figuring out effective therapies. Marked as spam
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Joe Hage
from Joe Moore
National Sales Director I have an adult son with intractable epilepsy. What I find is the lack of understanding of exactly what epilepsy is. I usually try to explain that the term 'epilepsy' is like 'cancer' in that it comes in many forms and different levels of severity. Every person (and their family) has their own unique issues and story. My son is on 3 different anti seizure medications and is near maximum dose on each. We have a 4 medication we use when he has 'clusters' of seizures. And suppositories when things get really bad and he is unable to take pills orally. Over the years he has been on several different medications. What you learn over time that everything has some 'trial and error' factor to it. Different meds work for different people, same with the doses, and different combination of drugs. He is on his 3rd VNS all from LivaNova (formally Cyberonics). the VNS has been a game changer for his quality of life (and ours also). Marked as spam
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Joe Hage
from Pauline Brown
Business Architect Thankyou for sharing this tragic story so that we can all understand more clearly the devastating impact that epilepsy can bring to a family. Perhaps more research using magnetoencephalography (MEG) is the way to go ..... Marked as spam
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Joe Hage
from Susan Christensen
RETIRED My husband has epilepsy related to scar tissue from and auto accident when he was 16. He's been on several medications, all with undesirable side effects. I worry about sudden death the most. I hope they continue to work on finding better therapies as this can be a very debilitating condition. Marked as spam
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Joe Hage
from Ken Murchison
Associate Director, Commercial Sales Analytics Stay far away from VNS - a recent article on NPR exposes the risk of death far outweighs the benefits. https://www.npr.org/2018/01/17/578562873/are-implanted-medical-devices-creating-a-danger-within-us Marked as spam
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Joe Hage
from Kelly Bryant
Talent Acquisition Business Partner | Recruiter, US I work for LivaNova and have been an employee for more than 6 years. We were once known as Cyberonics, the inventor of the VNS. I can say your story about Abby is truly a heartbreaking one and that is why we are fighting each and every day to make sure this doesn't become a reality for anyone. Our company is driven to advancing the VNS along with other great devices, aiming to change and better the quality of life for patients around the world. I support all recruiting efforts for the US and some parts of our international offices. Please feel free to share my information. We all have a deep seeded passion to help those who have diseases such as refractory epilepsy and other diseases. I see your post, Ken Murchison and I urge people to not make a judgment based on a few articles. For people who truly can benefit from this product, it is a life changer and I have seen that happen for countless families throughout my years here. Marked as spam
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Joe Hage
from Benjamin Ghanoongooi
Senior Quality Assurance Consultant at GIL Intl CSvs Inc My prayers for the family and loved ones. Marked as spam
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Joe Hage
from Melanie Blank
Seeking New Technical Documentation Opportunities My condolences to Abby's family, from a "lucky" person with middle age onset epilepsy completely controlled for 20 years with one med. Marked as spam
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Joe Hage
from Cuitlahuac Velazquez
IQS Engineer at TUV Rheinland There is a new device just approved called the RNS Stimulator made by Neuro Pace in California. Unlike the VNS the RNS senses when seizures are about to occur and nips them at the source. Marked as spam
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Joe Hage
from Thomas Fontaine
CEO and Founder at Seenel Imaging Hi Joe, Actually I'm working on a new and unique imaging device that will help to localize the epileptogenic area specifically interesting for any drug resistant patient where surgery is likely to mean seizure free.... the company is on the launch pad. Stay tuned. Marked as spam
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Joe Hage
from Steve Romanoff
Regional Sales Manager - ROSA Surgical Robotics at Zimmer Biomet The ROSA Surgical Robot from Zimmer Biomet is pioneering minimally invasive surgery for the treatment of epilepsy. ROSA acts like a 'GPS' of the skull, allowing Neurosurgeons to provide less invasive interventions. About 1/4 of the Level-4 Epilepsy Centers in the United States already have a ROSA and this is growing rapidly. ROSA is the first step in allowing Neurosurgeons to take more advanced and precise surgical interventions for the treatment of epilepsy. More info in the links: http://www.medtech.fr/en/rosa-brain + http://www.stanfordchildrens.org/en/service/neurosurgery/rosa Marked as spam
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Joe Hage
from Josh Ellis
Engineering/Regulatory Consultant The with surgery--with or without robots--is that it's only as useful as the EEG data you're basing your cuts on! Historically EEG systems have been low-res with slow temporal resolution and have therefore been missing steps in the seizure path in the brain. Cutting out the wrong chunk of brain doesn't do any good! Check out Electrical Geodesics Inc. (www.egi.com) for the latest in high spatial/temporal resolution EEG, I worked with them as an engineer about a decade ago and they really have an outstanding brain science team backing their product development. Vagus Nerve Stimulation...I'm not sure we really understand what we're getting into with that. Listen to this amazing RadioLab episode for an introduction into the importance of what is being communicated along that path, and how little we understand of it: http://www.radiolab.org/story/197242-gut-feelings/ Marked as spam
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Joe Hage
from Raymond Clark
President at Clark Consulting Group Cerebral Therapeutics is developing a system using an implantable pump to inject drugs directly to the affected area of the brain. Marked as spam
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Joe Hage
from Robert Connor
Assistant Professor at St. Catherine University I have not researched this area, but happened to read this and the request for insights into possibly related work in the med device area. Medibotics is working on incorporation of dry EEG sensors into eyeglasses (in a relatively non-intrusive manner) which could offer limited mobile real-time EEG monitoring. Granted, it would be nowhere near as many sensors as would be used in a wet EEG reading in a healthcare provider setting. However, it may be that even limited info from wearable mobile EEG sensors could help to detect patterns which could predict seizures -- which could be linked to a neurostim device to help prevent the seizure or at least give an early warning? Just conjecture. Might not be feasible or might be something which someone is already pursuing. Again, have not done thorough research in this area (except more narrowly on incorporation of EEG sensors into eyewear). I am not used to posting on LinkedIn, but will try to check back and see if there are responses. Marked as spam
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Joe Hage
from Teresa Prego
Startup Market Development & Commercial Leader - Market Growth, Strategy, Marketing, Commercialization,Product Strategy ROSA combined with technologies like the RNS from Neuropace as well as laser ablation are changing the epilepsy space dramatically, and changing the way points of seizure origination can be identified through minimally invasive (no craniotomy required) neurosurgery (SEEG). Understanding where the seizures originate and then being able to ablate focal areas or apply RNS to help control seizures changes treatment options for patients. As a former employee of Medtech, the small company that brought ROSA to market, and a parent of a 22 year old with epilepsy, I am in awe of the engineers who are making these new treatments possible. I only wish Abby could have benefitted from these developments. Marked as spam
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Joe Hage
from Brady Hatcher
Co Founder, Principal at Switchback Medical I just found out about this today. Amazing possibilities for my 1 year old niece. Very inspiring! https://www.texaschildrens.org/video/epilepsy-center-texas-childrens-hospital Marked as spam
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Joe Hage
from Keiron Sparrowhawk
Founder and Chief Scientist, MyCognition Hi, I worked in the Wellcome research laboratory that discovered lamotrigine in the early 1980's and have always had an interest in epilepsy. My "day-job" these days is running MyCognition, a cognitive health company. We have developed digital cognitive assessment and training programmes. In our neuropsychiatric clinical trials we have had several patients saying it feels as though our interventions have "reset" their minds, and overall we are getting some very promising results. We haven't yet done a study in epilepsy, but it makes me wonder if we would show a positive benefit? I'd be happy to make our products available to anyone who wishes to collaborate in an epilepsy study. Thanks for sharing. Marked as spam
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Joe Hage
from Genevieve Lavertu
Sr Director, Medtronic Care Management Services at Medtronic of Canada Ltd. Check this link: http://eplink.ca/category/research/ Marked as spam
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Joe Hage
from Neil Beswick
Chief Marketing Officer for Incyphae & VP Business Development for Resonea I have an 11 year old that is struggling with 2-15 seizures a day. VNS is a good option and we may try that next. What is not generally known (I was unaware until recently) is that a ketogenic diet has almost identical efficacy as VNS and can also be used in combination. The diet is only practiced at a handful of children’s hospital. A charity called the Charlie Foundation is a useful resource. Marked as spam
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Joe Hage
from Kristin Adkins-Lafata, MHA
Associate Administrator at Elevation Hospice of Colorado My daughter has epilepsy and has struggled for the last 4 years to make sense of this disease. Doctors and tests have yet to reveal why a routine surgery changed her brain and caused the onset of over 30 seizures a day. I pray for technology to catch up and create better outcomes for all who suffer from seizure disorders. Thank you for sharing Abby’s story. Marked as spam
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Joe Hage
from Richard Little
Chief Executive Officer at Exsurgo Rehab UK Ltd We are having a look at a detection and warning system, believe we can give enough notice to get the person safe to avoid all the secondary complications of injuries from fall. We are looking to collaborate with experts in the field. Marked as spam
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Joe Hage
from Peter Gianopoulos
Sales Representative at Zimmer Biomet Quebec There is a new Robotic machine called Rosa. I intended to help neurosurgeons to detect the specific location were the spark is done. Once detected they can operate. Marked as spam
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Joe Hage
from Nick Schmansky
Co-Founder & CEO Hi Joe, our company, CorticoMetrics (www.corticometrics.com), has been working on software that aids a radiologist in finding cortical dysplasias in MRI images of the brain. FCDs are apparently quite difficult to find with the eye, and are the source of some seizures that medication cannot treat. We're working toward FDA clearance of this software (as a device). The SBIR funded work is described here and I'll present at the Epilepsy Foundation 'Shark Tank' competition this month, seeking funding to expand the work to clinics. Marked as spam
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Joe Hage
from Dermot Walsh
Managing Director at Southern Cross Bio My daughter had epilepsy after a stroke as a toddler. The solution from great Ormond Street was surgical intervention. A hemisoherectomy and partial disconnect completely cured the epilepsy and she has been seizure free for over 20 years. Marked as spam
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Joe Hage
from Armando V. Mena-Durán, MD, PhD
Cardiovascular surgeon. Hematologist. Molecular Biology Researcher. Many epilepsy conditions are devastating and very hard to live with... Readings these lines and because the "Doctor Google effect" is very difficult for patients and parents to discriminate medical-scientific facts from pseudoscience that only creates false hopes anger and frustration. Everybody should be always be guided by a board certified physician to know or adopt new therapies not dummy gurus.. On the other hand we have increase the speed new therapies arrive to patients particularly in socialized Health Care systems as in Europe where bureaucratic paperwork makes it a long wait for many patients who cannot afford it. Marked as spam
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Joe Hage
from Mark Clark ABOC
Open to unique opportunities. Coffee Addict not intending to recover. LinkedIn Ninja warrior I have 3 in my immediate family with epilepsy, it needs more awareness. Marked as spam
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Joe Hage
from Benjamin Joy
Product Manager Individual & Small Group Insurance at Providence Health & Services My story and best solution I could find. We went six years before the reality of SUDEP really sunk in. My son has the worst odds. I hope Abby’s family has found a degree of peace. https://www.linkedin.com/pulse/walk-talk-living-litmus-test-benjamin-joy Marked as spam
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Joe Hage
from Karsten Hagemann
Regionalmanager bei Bayer Vital GmbH Sad story ... Please keep in mind to (try to) check/monitor heart rhythm for arrhythmias before/during seizures. There can be cross-talk (one triggering the other) and sometimes arrhythmias with intense muscle-contractions are miss-diagnosed as epileptic seizures. All the best for your relatives and patients. Marked as spam
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Joe Hage
from Debbie Briody
Group Operations Director at BELLS FOOD GROUP LIMITED My 23 year old son has epilepsy and we also find that diet has a real impact. No matter which combination of meds he is on, there are always side effects that have a real impact on his life - diet and exercise seems to counteract some of these. Marked as spam
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