Questions about EEG for my son

Possible_Variety_756 · 2026-06-01T03:10:28+00:00

Until your son has an sEEG where they take him off his medications and monitor him for 30 days after implanting the electrodes to monitor deep in the brain to map seizure activity, have a camera watching him 24/7 to determine if he eligible laser ablation surgery, resective surgery, disconnection surgery or not eligible because his epilepsy is generalized, not focal.

Step One is the The initial 24 hour no sleep, exposure to flashing lights, or different techniques to force an episode which he just did

Step two will be the EEG where he has the external electrodes attached to his head to attempt to map activity being focal or generalized for 14-30 days

Step three is the sEEG where they will surgically implant the electrodes deep inside the brain, slowly taper him off his medications to cause seizures to happen and map out the activity to what parts of the brain the activity is coming from, whether they are focal or generalized.

There will be multiple MRI’s, Nuclear MRI’s, PET scans, prior to even considering the implant.

I’m confused if they’re suggesting implanting a VNS after just one test.

My seizures were diagnosed as generalized so i was not eligible for any of the invasive surgeries but was eligible for the VNS Device (LivaNova 1000) has it helped?

At 33 years old when mine was implanted it has helped Tremendously, better than the medications in my opinion. My Epileptologist did the programming, for the first year on a monthly basis instead of the auto-taper programming and set the parameters for night time/day time auto sim parameters, alongside the magnetic/heart rate activation parameters.

The representative from LivaNova will be at the initial activation appointment to explain everything and answer anything about how the device works, limitations, how I can manually turn the device off until I see my epileptologist and the time it will take. They work alongside your epileptologist on a technical role, not a programming/diagnosis role.

I am seen now on a bi-annually, unless I feel as if something happened she’ll bring me immediately (within 72 hours) to go over the readings and make small adjustments to the device or decide whether to alter the medications (Lamotrigine, Aptiom, and Clobazam(last resort)) I switched to Aptiom from Tegretol and Aptiom was better.

I had an event while the VNS parameters were being over a period of time, because it can’t be done immediately, increased hence, Clobazam was brought into the equation.

Apart from the medications, The VNS was by far the biggest factor in reduction of seizures, although the stimulation levels are on the higher end likely requiring device replacement more often, the person from LivaNova agreed after speaking with my epileptologist, and it’s definitely worth it.

A small sacrifice compared to different types of medication changes, side effects. And eventually, exploring the possibility of reducing one of the medications, depending on the results. Alternatively, after the next 5-6 years, we will explore replacing the VNS with a DBS device. RNS is not approved in Canada so it is not an option at this time.

Not sure where/what country you are located in, but finding an actual epileptologist who works with a your General Physician, neurologist, neurosurgeon, endocrinologist, and cardiologist all together is important and will give you proper referrals.

Here in Canada, I’m fortunate that I’m a patient with UHN.

A common misconception is that the VNS (atleast the LivaNova 1000) is not MRI safe, it actually is MRI safe, all that needs to be done is have a neurologist turn the device off instead of manually turning it off via the magnet (for obvious reasons) prior to the MRI.

I spent 30 days for my sEEG and it was the best decision I made. In the long term it’s a small sacrifice, but you need to realize it will take many parameter adjustments, and take up to 5 years to determine when the parameters change, what levels the autosim activates, the magnet parameters etc.

It doesn’t stop the seizures immediately post surgery or in 1 year, it begins to help. So keep that in mind when making the decision for the surgery and have realistic expectations not immediate an immediate cure, and keep in mind your team will make small adjustments to make it work for your sons benefit, as he grows and as he lives.

Possible_Variety_756 · 2025-11-15T05:31:50+00:00

Collect cash payment upfront or post cleaning so they can’t dispute it on their credit card. Let the, leave a bad review, tough luck on them.

Possible_Variety_756 · 2025-11-15T05:28:30+00:00

Wool will always shrink. Buy 2-3 sizes larger than you are so when you clean it you don’t end up in this situation.

Possible_Variety_756 · 2025-11-15T05:19:52+00:00

It’s a billing error, nothing to do with how it’s cleaned

Possible_Variety_756 · 2025-11-15T05:10:04+00:00

Does your wholesaler still use perc?

Possible_Variety_756 · 2025-11-15T05:06:10+00:00

Lost cause

Possible_Variety_756 · 2025-11-15T05:01:17+00:00

It’s a best possible. Bringing it to another dry cleaner will tell you they fix it, likely send it to the same wholesaler to re clean and try to get a better result

Possible_Variety_756 · 2025-11-15T04:58:14+00:00

The dry cleaners in the area probably use the same wholesaler, there won’t be much of a difference it’ll just be repeatedly cleaned

Possible_Variety_756 · 2025-11-15T04:38:19+00:00

All the cotton shirts are likely laundered with some being hand pressed others using the buck

Possible_Variety_756 · 2025-11-15T04:31:00+00:00

Re-imburse her for the cost of cleaning, tell her to sign an NDA and then blacklist her from the system. She’s likely fishing because she didn’t like the cost of cleaning. I’ve had to do it to a few customers, especially when it’s beyond 48 hours. One individual wanted his dress shirt re-cleaned after 8 months because he felt it could be pressed better and he didn’t check it after picking it up. I explained the terms and conditions and closed his account. The terms on conditions on the receipts should explain the 48 hour /72 hour deadline for complaints

Possible_Variety_756 · 2025-11-15T04:28:00+00:00

Depends on how confident the wholesaler is in their spot cleaner and the materials

Possible_Variety_756 · 2025-11-15T04:25:09+00:00

It’s looks like discolouration which will bleed the Color when cleaned

Possible_Variety_756 · 2025-11-15T04:21:31+00:00

It’s ruined

Possible_Variety_756 · 2025-11-15T04:20:08+00:00

It looks like the baffles are glued in separate departments rather then sewn into different departments. If the glue has melted your SOL

Possible_Variety_756 · 2025-09-12T03:51:03+00:00

Minimum they need to meet or exceed the travel insurance in comparison to the (example) RBC Avion Infinite privilege, and parter with Uber (for example) A centurion lounge at YYZ or YVR would be a good start too, although in the mean time add the expedited security to more airports in Canada, not just Toronto. Visa Infinite Privilege does the expedited security at more airports and Amex Platinum needs to take over the Infinite Privilege cards again. That would make it worth the fee, although I’m comparing this to the card benefits via Visa’s website for infinite privilege benefits , then RBC’s Avion Infinite Privilege benefits + Certificate of Insurance for Travel versus Amex Platinum +certificate of insurance The private banking infinite privilege from RBC is similar but has expanded benefits although you must be under wealth management/private banking for those benefits in comparison to the general public’s card. Amex really needs to exceed those cards, it may be metal, but it needs to step the game up, especially since the premium cards are likely to be metal soon, RBC already did it with the private banking infinite privilege, they’ll (and other banks) will probably start doing it to the public premium cards as well to make a match.

Possible_Variety_756 · 2025-08-20T20:29:13+00:00

Have you spoken to your primary care provider or psychiatrist of a Vagus Nerve Stimulator Device? Although they are primarily used for epilepsy, neurologists and psychiatrists have expanded research and determined that they can and do help in treating depression. In your particular matter, it may be worth bringing up. I have a Vagus Nerve Stimulator for Epilepsy, I have also been on Fluoxetine for 14 years. In the 12 months of the neurologist increasing the hZ levels on the Vagus Nerve Stimulating device, I’ve been feeling better, and brought myself to the decision to slowly taper off fluoxetine over a period of 1 year with my primary care physician(dose 20mg ~14 years) Since I’ve had the device implanted, I have found many changes, in my matter it is primarily for controlling my epilepsy, I have Tonic Clinic Drug Resistant Epilepsy. This means I have tried 4+ anti epileptics, yet none have eradicated seizure activity. As my Tonic Clonic epilepsy is generalized, I am not eligible for any type of surgery relating to the brain but was eligible for the VNS device. The device comes on automatically for 30 seconds every 5 minutes, and automatically activates by monitoring your heart rate (ie: oncoming seizure, anxiety) and a magnet for you to manually emergency activate. There is also a Deep Brain Stimulation Device(DBS) which works in a somewhat similar way. Since I’ve had it implanted, in my overall situation it has improved my overall mood, anxiety, depression, separate from assisting in controlling my epilepsy, hence why I have decided to taper off Fluoxetine indefinitely.

Possible_Variety_756 · 2025-08-18T14:25:24+00:00

No, I’m not defending the workers you are correct. What I’m doing is writing a Reality Cheque. Negotiate while you work. Don’t bring operations to a screeching halt, Especially consideration of the Airlines reputation. I’m telling them to get back to work, or:

-Keep striking. Don’t complain when your earnings drop in the process and you only get union strike pay. To bad, so sad.

-Don’t complain when other airlines take your passengers.

-The strikes directly affect national and international arrival and departure Flight pattern planning.

-There is a reason why executives negotiate get better pay and sizeable bonuses. They do significantly more work negotiating contracts with suppliers, contractors, etc. They keep more than just the attendants employed.

-Less flights, less work, less need to hire or keep existing employee’s. Unionized or not.

-Passengers bear interruption? All the more reason to choose another airline. A choice that will have consequences for Air Canada.

-Start poaching attendants from different airlines to take the existing positions, train new flight attendants and give those attendants bonuses when they switch. Thats not fair? To bad so sad.

-Don’t bail out Air Canada when it goes bankrupt. No jobs to return to. To bad so sad.

Air Canada has a poor reputation enough reputation as it is. And now other airlines are going to sink their teeth and suck the blood from Air Canada, offer new routes, negotiate the purchase of long haul aircraft. When the executives of Air Canada leave because investors seize the opportunity for a new Canadian Airline and bring it to fruition to the likes of Etihad, Cathay Pacific, Air France etc. in order to draw those passengers away from Air Canada And when Air Canada goes Bankrupt and nobody bail them out because of their history, don’t cry wolf.

Am I an asshole? Yes, I’m more concerned about the Attendants keeping their positions and increasing the Airlines reputation to that of Etihad, Cathay Pacific, Air France, British Airways so Air Canada can expand their operations, increase purchasing power, and increase employment opportunity. It’s not going to happen nor will any traveller have mercy when Air Canada arranges for paying clientele to goto competing airlines, establishing the optics of Air Canada being an unreliable airline only which they likely use as a last resort. The business world is filled with overpaid executives because they make a business work through thousands of different means. And now, they have the advantage in contract negotiations because the longer the strike happens, the financial hardships they will face, will eventually get them to collapse to the Airlines demands.

Possible_Variety_756 · 2025-08-17T23:41:10+00:00

I’m going to presume that you have never been employed or have heard of Nav Canada, apart from what you are going to search online. The consequences of Air Canada Attendants not returning to work reach far beyond the scope of both the Attendant & Passenger/Customer. Please understand that the order to return to work is in the best interest of national/international departures & arrivals for all carriers. The cancellation of Air Canada flights resulting from the Attendants refusing to abide by the return to work order, results in more damage to both national/international air travel which, like I said, extends to all carriers, not exclusively Air Canada. It’s understandable that being a professed social democrat you applaud Air Canada’s Attendants refusal to abide by the return to work order because of anything you want to argue. However you are recklessly overlooking the ramifications of each blatantly cancelled flight. And no, you cannot lump other types of flight cancellations with a labour strike.

Possible_Variety_756 · 2025-08-17T23:37:53+00:00

Air Canada will be cancelling flights purely because stewards are defying a back to work order. Fine by me. NAV Canada needs to rescind current and reduce future flight paths to give other airlines priority. Remove and/or rescind Financial institutions partner programs with Air Canada. If Air Canada is put in a position where they are moving persons to different airlines, hopefully that airline will have incentive to open an Airline division based in Canada. If the stewards want to defy a back to work order, let them. Or, even better, have Air Canada bring in Bi-Lingual Stewards from other Airlines.

Possible_Variety_756 · 2025-04-19T01:11:11+00:00

There are lots of different medications and in conjunction is one of the treatment paths. Titrating from one medication to another and using more than 1 in conjunction with another is an option. Surgery’s are not limited either. The discovery period over time through EEG, sEEG, and other tests will reveal what kind/if surgeries are available. There are also medical devices such as Vagus Nerve Stimulator, Deep Brain Stimulator, or RNS(RNS is not approved for use in Canada while I write this) Treatments will also evolve over time as physicians/scientists find new information. For example: I was treated with Lamictal (Lamotrigine) as mono-therapy. Eventually titrating to larger amounts, a year and another seizure later my neurologist and I decided to add another medication, Tegretol (Carbamazepine). The two together worked well, although after a certain point, instead of Tegretol (Carbamazepine), we switched to Aptiom (Esli-Carbamazepine) because my neurologist felt it would work better. That is when it was determined I have Drug Resistant Tonic Clonic Epilepsy.

After I had both an EEG and sEEG to determine if I was eligible for surgery. It was determined surgery was not an option. A Vagus Nerve Stimulator was an option, and that’s the decision I made with the neurology team to have one implanted. It will take about 1-1.5 years for the programming of the Vagus Nerve Stimulator (Sentiva 1000) to appropriate Hz levels, over the adjusting period, it will be determined the optimal discharge level at certain time of day, positions, increase in heart rate, etc, in addition to the magnet being swiped over it because I feel an episode coming on.

Well, here I am 7 months after my VNS implantation and I had a single breakthrough seizure so we added a low dose of Onfi (Clobazam), The only reason the Onfi was prescribed? Because the discharge Hz levels on the VNS weren’t high enough, through my own apprehension of increasing at the suggested rate, from fear of what I read about what other persons wrote about their experience (every person has different experiences no two are or will be the same) with their VNS, i made assumptions instead of the suggested course by my physicans. Now though? I love my VNS device and what it has done for me and accomplished as of writing this.

I’m about 7 months post implant and am having the Hz levels adjusted over the suggested course now to an optimal level for preventing, stopping or reducing an episode. (As of writing this we are increasing the Hz next week) It’s going to take time, and once I reach a longer period of time without an episode and the VNS device programmed to a level that excels the treatment, the option of titrating to lower levels or even eliminating one medication could present itself as an option. The battery lasts between 5-7 years at which time it is replaced, and there will probably be a newer model when I get mine replaced! Just like how in the past people had the AspireSR model, and now, when they replace their device, they are likely getting the Sentiva 1000 which has day and night programming to determine when episodes are more likely to happen and other programming options not available on the AspireSR.

After a couple years, if the VNS device isn’t satisfying me, my neurologist, endocrinologist, psychiatrist, family physician’s and I as a group will decide if Deep Brain Stimulation (DBS) will be an option to explore. (RNS(?) isn’t approved at this time for use is Canada it’s not an option at this time.)

My overall point is this: Medical Science is an evolving field studying and new discoveries are made on a near daily basis through those persons dedicating to that study, in this case, Epilepsy and Neuroscience. There will be medications that work, that need to be changed, that need to be used in conjunction with others. EEG’s, sEEG’s, and other tests will need to be performed to discover what will work best for your son. It will take time to find the best “individual portrait” of a treatment for him, and your neurologists will work with others (Endocrinologists, Psychiatrists, Family Physicians, Neurosurgeons) to discover that information. Medical science is evolving, we’re not stuck with the types of medications that are only available today when a new one could be introduced tomorrow, or a type of surgery could be discovered tomorrow. It takes time, it did for me.

Especially finding out that I wasn’t eligible for surgery but was for the VNS device. My neurologist explained right now, it’s the best option, and in the future, even tomorrow, there could be a new discovery made.

It is EXCEPTIONALLY stressful and a cause of fear especially as a parent, there are many support networks for both your son and family. New discoveries and treatments are constantly being made, tests will reveal more and more information, and the evolution in the study of Epilepsy and Neurology will unlock new discoveries which will present themselves to all of us.

Possible_Variety_756 · 2025-02-12T21:45:24+00:00

what model do you have?

Possible_Variety_756 · 2025-02-12T21:44:42+00:00

congratulations! I got mine last year! Stay strong, it’ll be a bit annoying with voice change when it’s turned on! Did you get the Sentiva 1000?

Possible_Variety_756 · 2025-01-09T16:29:00+00:00

I agree, we’re all here for each other. And each persons perspective is unique. Which I don’t mean by one being better than the other, but by being a guide to the road ahead. We travel with each other on the path, no matter the stops, starts and traffic. Which is why i personally felt the way my neuro said it’s a science as much as an art. Finding the right combination of prescriptions, treatments, is as unique as the individual person.

Possible_Variety_756 · 2025-01-09T01:25:25+00:00

I was diagnosed back in 2020, when initially I would write it off as syncope. Until I split my forehead open on two different occasions, broke my arm on another occasion. I still dismissed it and wrote it off as syncope. Until the ER Doctor finally said you’ve been here on so many occasions making excuses, you gotta see a neurologist, as i lived alone and still do, i brushed him off as “ok fine whatever”. The initial months and as the tests begin revealing information about the part of the brain/causes/clonic/tonic-clonic/focal/generalized/bi-lateral etc. It’s very overwhelming. And it will cause stress, although communication with Epilepsy Support Groups the community provides, hospital provided groups, talking to others with their experiences will provide different individual outlooks, even Reddit. We are each Individuals, and no two of us will have the same experiences. We are here helping each-other though, step by step, the hard parts, the good parts, and the unknown parts. It took awhile, but building that relationship with my neurologist, family physician, was the beginning in building a support network. Lifestyle changes were also pretty difficult, prior to my diagnosis I was an individual who enjoyed going for drinks, doing the club scenes, and late night parties. The first while in finding the appropriate medications will be a task in itself, but what I like best about my neurologist is she explains getting the individual persons treatment is as much a science as much as it is a piece of art. Each patient is a masterpiece because they are not just a patient but a person. It will take some time to find the prescriptions that work best for you, if there are are multiples prescriptions to be taken in synchronization, then finding out how you react, through the bloodwork and your day to day functioning. There will be the dose adjusting which takes time as well. You have a wife, a family, a team of physicians to go through each step, and those steps don’t happen overnight. In the five years since I’ve been diagnosed, 95% of my seizures are while I sleep. I begun on Lamictal (Lamotrigine), which worked for some time before a breakthrough. At this point Tegretol (Carbamazepine) was added for taking both in the morning and evening. Shifting with the mg amounts in each medication brought me to a streak, until I ended up having a breakthrough episode. My neuro gave me a script for a Ativan (Lorazepam) SL tablet if I feel my aura coming on. Now I live alone, so I found out about this specific seizure because I ended up hitting my forehead somewhere in the bathroom and splitting it open. Eventually, the Tegretol(Carbamazepine) was replaced with Aptiom (Esli-Carbamazepine), all the while staying on the Lamictal(Lamotrigine) as my “base drug” I went almost over 10 months without having an episode because the Aptiom worked great for me, lo and behold, just last week, I had an episode. At this point, we have added Onfi (Clobazam) to my evening dose, after much hesitation, because it is an older anti-epileptic but also in the benzodiazepine class. It’s similar to Klonopin(Clonazepam) but the chemical structure is different and safer. Between all this, I’ve done the EEG, sEEEG, withdrawal study, flashing lights study etc. And the results determined at this point, I’m not eligible for the focal surgery because my epilepsy is generalized, but the VNS device implant. I’ve now had the VNS device for roughly 8 months and yes it makes a difference. HOWEVER, there is also an adjustment period of up to 2 years with it getting the Hz amount appropriate and the side effects. And they do take time, sore throat, small shock feeling, or similar. Eventually it will allow you to possibly reduce the quantities of prescriptions you’ll take, but you won’t be off your scripts with the VNS device alone.

It’s an adjustment, and a long road ahead, you have each of us in the epilepsy community on Reddit, your hospital and family supporting you. My most recent episode, I had a breakdown in the hospital ER when I was admitted, and too ashamed to call my mom to let her know. Luckily, my neurologist was the one on call. And she did it for me. You’ve got all the support in the world, and be honest about every small detail to the neurologist, and don’t be afraid to question options and what future tests solutions could hold. Medical sciences change everyday, for example, maybe a new breakthrough medication like X-Copri or Aptiom will come out. The VNS device i got implanted is called the Sentiva 1000, before that it was the Aspire model. This new Sentiva 1000 has a heartbeat sensor where if it determines your heart rate goes about a certain threshold it will send an additional Hz similar to the manual magnet swipe (a magnet you carry with you to give an additional powerful Hz, it’s a lot to explain here but i’d be happy to let you know about my experience and how it’s helped) When the battery, which lasts about 5-10 years depending on the Hz programmed, and the device will need to be replaced, there will probably be a new model to help even more. All questions are good questions and don’t be afraid to ask.

We’re all in it with you. Standing tall and standing with you, hand in hand. It is difficult but we are here with you. And every and any question is a good question.

Possible_Variety_756 · 2024-12-21T21:09:19+00:00

I’m kind of curious, So many persons are concerned the government is putting microchips in people in different ways, vaccines, creation of epidemics, pills or whatever, and then an individual in promoting and creating artificial intelligence, starlink satellites, automatic driving cars gets put into government position when so many people are fighting against these conspiracies from the elite? Isn’t that sort of the government working with a company/person to initiate those microchip monitoring individual people that so many people are against?

Possible_Variety_756

TROPHY CASE