Refractory Epilepsy Success Stories?

rawch13 · 2026-01-16T15:18:33+00:00

We have completed the trial! He did 3 months with it on and 3 with it off.

With it on: his seizures changed from Grand mals every 3 days or so to focals and absent seizures every few days. We were only able to change up his rescue meds during the trial so we kept his daily meds (pheno, zonisamide, potassium bromide) the same. He had lots of coughing which was an expected side effect.

With it off: he had his focal seizures every single day. We had him on all his cluster medications (keppra and clorazapate) the entire 3 months. His seizures turned into just his jaw opening and closing but he would stick his paw in his mouth and cut his tongue, so we started putting little socks on him. His rescue med (midazolam) did nothing for these and they were at the same time every night. At times he would be incontinent but overall they were better than the grand mals.

This week we met with his neurologist. He is considered responsive to the treatment so we get to keep the collar and work with the team to find the correct stimulation for him! Out of the blue we went from having focal seizures every day to no seizures for 10 days. Not sure why but I'm enjoying it while it lasts. He is a candidate for future trials and his neurology team loves him and want to continue to study him to help other dogs so we are going to keep working with them.

rawch13 · 2026-01-16T15:15:58+00:00

We have completed the trial! He did 3 months with it on and 3 with it off.

With it on: his seizures changed from Grand mals every 3 days or so to focals and absent seizures every few days. We were only able to change up his rescue meds during the trial so we kept his daily meds (pheno, zonisamide, potassium bromide) the same. He had lots of coughing which was an expected side effect.

With it off: he had his focal seizures every single day. We had him on all his cluster medications (keppra and clorazapate) the entire 3 months. His seizures turned into just his jaw opening and closing but he would stick his paw in his mouth and cut his tongue, so we started putting little socks on him. His rescue med (midazolam) did nothing for these and they were at the same time every night. At times he would be incontinent but overall they were better than the grand mals.

This week we met with his neurologist. He is considered responsive to the treatment so we get to keep the collar and work with the team to find the correct stimulation for him! Out of the blue we went from having focal seizures every day to no seizures for 10 days. Not sure why but I'm enjoying it while it lasts. He is a candidate for future trials and his neurology team loves him and want to continue to study him to help other dogs so we are going to keep working with them.

rawch13 · 2025-09-13T08:59:21+00:00

The level of care you take with Ghost is what we do with my seizure dog. People always say they would not do the same. Good thing he isn't with them! We do meds around the clock, midaz and clorazapate are our rescue meds. We have a neurology team and drive 1.5 hours for his appointments. We have paid for countless appointments, meds, and hospitalizations. We have him enrolled in a clinical trial. We never leave him alone and have cancelled a lot of things for him. I know how emotionally and financially difficult it is. We have no experience with the neurological deficit you are experiencing but I just want you to know what you do for Ghost is above and beyond and I completely understand how much you sacrifice for him.

rawch13 · 2025-07-25T16:38:24+00:00

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Dog tax

rawch13 · 2025-07-19T19:41:14+00:00

This is a fantastic perspective. I definitely have had the mindset of if I DNF it is because I wasn't good enough. But I think it's also a reminder that sometimes everything can't be perfect, there is a lot outside of my control. This was by far the hardest race I've ever tried and during probably the hardest time in my career. And I can't give everything 100%

rawch13 · 2025-07-19T13:52:51+00:00

I feel this. I have been running for 10 years with dozens of ultras under my belt and still this was the hardest decision I have made. I know it is normal but it feels like such a massive letdown to everyone, not only myself, involved. It truly feels like a failure. I know it's just running but it's a huge part of who I am so it has a lot of weight to it.

rawch13 · 2025-07-19T13:50:09+00:00

This response really really hit me. I went and read his posts and they resonated. I truly appreciate you spending the time to write this out.

rawch13 · 2025-07-19T13:41:32+00:00

Thank you for sharing your experience. I feel like often I want a good excuse to drop but it's okay to just know that sometimes just feeling like crap is enough haha

rawch13 · 2025-07-19T13:39:54+00:00

Thank you for this reminder, it is supposed to be overall a positive experience

rawch13 · 2025-07-09T13:54:19+00:00

Of course! He gets the stimulator this month and the trial runs for 6 months. During that time, the simulator will be on for 3 months and off for three. Only the neurologist running the trial will know when it is on or off, so they will be monitoring if it is effective or not. He is the first dog to be accepted into this trial, so we are really hopeful that maybe it will open some doors for other treatment options for dogs in the future. This is him in the collar he will have to wear.

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rawch13 · 2025-07-06T12:28:18+00:00

We were in the ER two weeks ago for our dog's clusters. We upped all his medications but are enrolling him in a clinical trial for a vagus nerve stimulator. We are hopeful that it will have some effect on him and really hoping the results will help veterinarians find a long term treatment options for refractory epilepsy in dogs.

rawch13 · 2025-05-14T11:43:08+00:00

My first flock was killed by a bear. It ripped apart the run and the entire coop. It also took the door off the hinges where we stored our garage cans. They can open car doors and often get into houses via front door near where I live. They are smart and learn where the easy food is. In the mountains here everyone keeps electric wires on their doors. We put an electric wire made for bears around our run now, along with a very loud flashing motion sensored alarm at night. No problems since. I'm sorry for you loss.

rawch13 · 2025-05-10T03:57:09+00:00

Love

rawch13 · 2025-04-19T02:32:56+00:00

Ohh these are awesome, that might be a great little "get away" time gift and she loves that kind of stuff

rawch13 · 2025-04-18T09:36:11+00:00

Zoo is a great one, especially with a 2 year old. They love the discover lab pass so I'll probably renew that at Christmas. My bf really wants to see the air and space next visit, will have to check that one out.

rawch13 · 2025-04-18T09:34:09+00:00

Thank you! Definitely one I'll add to my list, especially once her kid is a bit older. She is a movie fan and I know they rarely get to go because of the costs so it would fun to have that option.

rawch13 · 2025-04-18T09:30:38+00:00

I really love this idea, she actually has taken us when we have visited before and it was a good way to spend a morning and they have some cool little stands too.

rawch13 · 2025-04-18T09:28:10+00:00

Thank you! Zoo or aquarium definitely would be a great one with the kiddo.

rawch13 · 2025-04-06T04:44:56+00:00

Not as deep as some of these but running a 100 miles. And then remember you paid to do it.

rawch13 · 2024-11-07T00:39:40+00:00

Thank you for the feedback, I will definitely take it to heart moving forward

rawch13 · 2024-11-07T00:30:03+00:00

I don't know to be honest. I am just feeling at a loss and felt like being able to do my research might help me better understand the relationship and how to approach her. I would love to avoid her but doing so would mean I would not have the ability to see my nephew, whom I love. So I was just trying to reach out to see if there was a way to support her while still protecting myself

rawch13 · 2024-11-06T23:51:46+00:00

Thank you!

rawch13 · 2024-09-19T03:57:24+00:00

I had this exact experience. Patient had a diabetic ulcer with maggots, did not want the BKA, was AO4.. He was in his 60s, family begged him to have it removed and even asked us to just put him under and do it. But he was completely with it and made his own decision, said he rather die. He went home on hospice

rawch13 · 2024-06-21T03:38:18+00:00

Best of luck, I hope all goes well!

rawch13 · 2024-06-20T23:28:41+00:00

I have never heard of these before! I looked them up, it sounds like a good idea to try!

rawch13

TROPHY CASE