A question for the LGS (Epilepsy) Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

How I currently manage my condition is, I see a neurologist on a quarterly basis, I take medication daily and I also have to go for an MRI yearly to ensure that nothing has changed.

After nearly 20 years of untreatable epilepsy seizures, our doctor finally sent us to a specialist in Portland where we finally got a diagnosis of LGS. We’re currently taking five heavy meds. And if we don’t get up to help her remind her to take her medicines, she doesn’t take them. And it’s just altogether difficult. She has to have someone with her all the time. She can’t ever be left alone.

So, we take her to see a specialist, an epileptologist. She goes every three months. She is on a daily regimen of five medications, all to do with her seizure disorder. And so, that is how we treat it. We make the decisions based off of her quality of life. We choose each medication knowing what weighs more, the risks or the benefits, and that is how we make our choices for that.

We have tried numerous medications. They worked for a little while, like a honeymoon period, and then they stop working. And at this time, it is not currently under control. We still struggle with it daily.

Our son is currently on several different medications for his seizure disorder, including Onfi, Vimpat, and Keppra. He also is on the ketogenic diet, which we decided on because his seizures were refractory and we were supposed to do a six-month trial to see how it worked for him. And we’ve seen a drastic decrease in seizure disorder. He is also on Baclofen for spasticity on his left side and receives Botox injections every three months for those. He also receives PT, OT, speech, and vision therapies to help improve his skills.

How we have gotten to this point is after years of switching hospitals, searching for the perfect care for her, we started off not knowing anything about epilepsy, not knowing any medications to where now she has tried over 15 medications and combinations of different medications. Currently, she’s on three different medications, and that’s how it impacts our life because we must remember to give her medication every day on time. She has been seizure-free for a long time, which we would love to continue. But if we leave the house, we need to make sure we have rescue medication for her in case she does start to seize. Like I said, we’ve been to four different hospitals now, and by hospitals, I mean the specialists that see her aren’t assigned to specific hospitals. So now we’ve been to four different specialists over the course of 10 years. Currently out of UCLA, which we have been for five years now and we’re very happy, and now she has been seizure-free. We have even tried CBD oil for her, but now we are strictly on pharmaceuticals. It took a while to find the perfect combination for her of different medications, and we came to that decision with our doctor through countless EEGs she has had, many hospital stays, and she still has seizure activity, but she doesn’t have breakthrough seizures, which is what you would see on TV if you will. She doesn’t have any breakthrough seizures, but she does have still a lot of seizure activity that hasn’t broken through, so we’re not fully out of it yet, but we’re in a much better position for her.

We do a combination of treatments to manage his epilepsy. He takes daily medications. One medication three times a day, and the other three, two times a day. In addition to that, he has a VNS implant that helps regulate his seizures as well. We also had a corpus callosotomy done three years ago to help with the drop seizures. So, the combination of different things was decided basically as things progressed and certain things were working and other things were not. He’s trialed many different medications. Many have failed, others have worked for a period of time and then quit working. So it’s like we rotated medicines based on how he’s doing at the time and when the medicines by itself weren’t enough, the VNS is introduced and that’s been a big help as well.

My daughter is followed by several different specialists. She sees someone for neurology, epileptology, GI, general doctors, and vision, and all the things. Anyway, her current medication list for her epilepsy, we landed on these medications after trial and error over the past seven years. She’s tried about 18 different meds. We’ve done brain surgery, we’ve done BNS surgery. She’s tried two extreme diets. So we landed on these three, just because they seem to be the most effective, with the least amount of side effects for her right now.

I take medicine twice a day. I take Lamictal. And I also go see a doctor a few times a year. I chose the medicine because it’s the one that doesn’t make me have seizures as much. So… And then also to help I take depression medicine as well.

I currently regularly see a neurologist to manage my condition, as well as take medications. My doctor and I discussed the options and the medication I’m on, Lamotrigine, was selected because of the fact that I’m on so many different meds and there can be so many interactions, so we sat down and we talked about what would be the best plan of action, and we figured out that that was probably our best option. But other than medication, and then yearly EEGs and just making sure everything is in check and following up several times a year with my neurologist, that is pretty much my treatment plan.

I just… At this point, managing it is taking the medication, ensure I wear what I need to by way of glasses. And we discussed it and we’ve worked with the type of medications that I needed to take. So we found one that worked on a day to day basis. So it was just trial and error.

I was diagnosed at 13 years old. And since then it has been a very long journey trying to find medication that’s worked for me. So I’ve tried almost every single medication from Topamax, Keppra, Depakote, Lamictal. And I am now on Vimpat. And the way that we decided on this approach was really a trial and error method. So again, starting from when I was 13, trying these medications, to 2018, when I was changed to Vimpat. So that’s the approach we decided on. My epileptologist consistently has taken a very conservative approach just in keeping me on the lowest dose that’s manageable. And that was decided by both of us just in managing symptoms.

My son currently has a VNS implanted in his chest. We came to that decision after not having success on meds alone in controlling seizures. He’s also now currently taking four anti-epilepsy medications, Calbonate, Epidiolex, Trileptal, and Keppra, and he is on so many medications because he does have refractory epilepsy and it has been difficult to find medications that keep him stable and non-seizing.

Honestly, I’m slightly limited nowadays in my treatment options. I developed a condition called angioedema and mastocytosis, two separate conditions in the last six years, and that limits them to kind of medication and the ability that I have to treat it. Right now, I’m having to basically manage my epilepsy through management of triggers and through diet and a healthy lifestyle, and most of all, managing inflammation. I’ve kind of been through a series of epilepsy drugs, and I’ve either had reactions or we had to discontinue them. And the doctor said, “Well, let’s just see how well you can manage and cope,” because most of my seizures are not of the grand mal variety. They’re usually focal absence seizures, and that makes things a little bit easier to manage. I know my major seizures tend to be nocturnal seizures. So when I’m asleep at night that I tend to have seizures almost constantly. My doctor and I just arrived on this very slowly saying, “Well, we’ll try this. Well, it’s not working anymore, or it’s not good for your body.” So we’ve kind of been left to adapt to an anti-inflammatory controlling diet and daily aspirin and management of inflammation triggers. But a lot of it is live by the day and go with the flow because I’m limited in the medications I can take with the reactions that I have to them.

I’ll be honest, most of the things that have been done for my son has been decisions that I have made. For lack of a better word, I’m pretty anal about what type of treatment my son needs. I spent a lot of time researching the different types of treatment, the different options available, side effects. What’s really difficult with LGS and my son initially started with infantile spasms. These are medical conditions that are so, so individual. Every kiddo is different. The treatment that works is so unique for each kid. What works for my son with managing his infantile spasms was just very odd. I don’t even know what convinced me to do what we did. We ended up using vigabatrin and phenobarbital to manage it. Those typical medications, like the ACTH shots or the prednisone, those just did not work. It was really just an odd combination that ended up helping him. It’s been the same with managing LGS. I don’t know why or how we managed it, but my son has a really good neurologist who’s been very flexible and open to trying different things with me. He’s always been very accommodating to try new routes. I mean, been on so many medications I couldn’t even tell you. At least 20 to 25 different medications. What we’ve ended up finally having work is we did the VNS implant, which actually had to be fixed. Let’s see he’s on clobasm and zonisamide, which I know that one’s an odd one. Most kids aren’t on that one. Then he has a couple of medications to help them with sleep, but again, it’s just this odd combination of medications that between myself and the neurologist we’ve looked up and we just trusted. I feel like the best thing is that he trusts my judgment with things and he trusts that what I’m telling him and what I’m reporting back to him is accurate. If I say him this isn’t working I want to try something else, he’s so open and willing to try new things. That’s probably been the biggest thing that helps treatment is just that really awesome teamwork that we have together with his neurologist.

[PII redacted] is not mentally able to make decisions for his medical care, and so the decisions have been his dad and mine and the doctors. He has a vagus nerve stimulator that was surgically implanted four years ago. He’s on six different seizure meds that we take at a specific time. He takes it at a specific time, three times a day. We monitor his food because that can be a trigger for seizures. We make sure his environment is pretty stable. We can’t take him above 2000 feet in elevation. So we have to…When we travel, we have to stay near sea level. So those are all things that we’ve done to manage his condition, to not have seizures.