A question for the LGS (Epilepsy) Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

I’m not sure what advice I would give if we… My daughter has had LGS epilepsy since she was the age of two. If we could go back to the age of two, I would try to explain to her what epilepsy was, how it works, so that she would want to choose to have a life instead of using it as an excuse to not to do things and to just stay home all the time, so that she could be more open and accepting of this diagnosis instead of being afraid of it.

I would say to her, “As hard as it is, stop focusing on the seizures. She’s going to have them, and it is going to be part of your everyday life. Basically stop hating them so much because you’re going to be miserable every single day she has one.” Just as hard as it is, and maybe unrealistic as it is, I still would try to encourage to accept the fact that that is going to be her life and that’s going to be your life. How I feel now, this many years later, is that seizures are a part of our life, part of her day. And they’re terrible, I’m not going to sugar coat that, but they’re everyday life. So it’s just a part of our life now. And it’s something we accept, and obviously, we would always love to go away, but it’s also just something that we can’t focus on every day or we would live in anger.

I would tell myself that it’s going to be a very long, hard road ahead and just embrace and pray and know that there’s lots of challenges to come.

We are so incredibly proud of our little guy’s determination. I would tell a person at that… who we were at that diagnosis when he was three months old to not be discouraged and to not give up, that he will do amazing things. He will outdo every expectation that the doctors are giving. Every time they say, “He probably won’t be able to do that,” he does.

This is a very heavy question. I would just tell myself that to just keep searching, to keep fighting, to keep learning, and doing what’s best for my daughter. I feel we have done so. I would advise myself to… I guess I would just maybe give what medications we’re on now because the journey has been difficult because she wasn’t seizure-free if you will. And now, because of the combination of medication that she’s on after years of searching, now we’re in a good place. So maybe I would just tell myself, try these medications at this dosage, because this is what works for her. I would also tell myself to be patient when it comes to friends that are outgrowing her and she doesn’t communicate with the same way anymore because she can’t keep up with them. They’re at a different level. That’s been hard, I think on me. She has a very good circle of friends, but kids are kids and they notice the differences and she’s just different and they know. And so I would say, be patient with that. But other than that, I mean, it’s been a difficult journey, but we’ve always just done what’s best for our daughter and we’ve always just taken on the next challenge fully and done very well with it, I feel. So maybe just the medication part would be the only thing that would be really heavy for me to say to myself.

I would tell the person that I was back when we were first diagnosed to, don’t seek seizure freedom, but seek as best control as you can possibly get with the highest quality of life and learn to balance those two. You don’t want to do too much medication to the point where the seizures are better controlled, but he’s not able to function at a good capacity. I’d also tell myself to learn to roll with the punches and to be flexible, realize that you don’t know what each day is going to bring and to definitely enjoy the good periods because there’s going to be bad periods that follow. So take advantage of those good periods and try to find outlets or ways to take time for yourself so that you don’t get overwhelmed or exhausted. Right now. It’s definitely a roller coaster. There’s times where we’re in a good place and doing very well, and there’s other times that there’s a lot of exhaustion and frustration. It’s kind of an up and down.

Oh man, that’s a loaded question. I’d give that person a hug and I would tell her she’s going to be okay and that things are going to look different than what she thought, but that doesn’t mean that it’s all going to be bad and that she is a lot stronger than she realizes. And to pray and hold on to your boots because it’s going to get wild.

I was actually born with my condition, so I guess that really doesn’t apply to me.

I would give them the advice to just keep pushing through no matter what happens with their condition, you can survive it. And although you’ll go through ups and downs with the epilepsy, you’re still going to live a fulfilling life. You’re just going to have a little bit of an extra challenge in management and trying to keep everything in check, but I would tell them that it’s not the end of the world and that you might even come out a stronger person because of that.

Be patient with yourself. Things will change. Go with your gut. If it doesn’t feel right, speak up. Don’t just let it happen. I feel much better now, once I started giving up with what I thought was right by the doctor, but I was the one going through it, and it was easier once I figured that out and started speaking up for myself.

If I could travel in time and meet the person I was when I was diagnosed and my loved ones, the advice that I would give them which may be hard to follow for someone who is newly diagnosed, but just to not be so fearful of the label of the diagnosis. Hearing that yourself or as a loved one hearing that someone is diagnosed with epilepsy, it can be really scary and it can be really frightening. But I think giving the advice that don’t be so fearful, that it will be okay. And again, I think that might be a little hard for someone that’s newly diagnosed, but just that there are a myriad of treatments and options out there. I wish that would have been told to me by doctors. Not necessarily, “Hey, you’ll be okay,” or “Everything will be fine,” but just “Listen, there are many, many different options for medication. And if one doesn’t work for you, there are others out there.” And just not having a guarantee per se, but just knowing that there are a lot of options would have been really helpful or maybe getting in contact with some support groups to find other people that also were diagnosed as well. I did a lot of that on my own. As a 13-year old, I was trying to find support groups online because I just felt so misunderstood and so confused. And it would have been really nice to have someone provide that for me. That’s the advice that I would give.

I would tell myself to just keep fighting. That’s a really hard question and I don’t think anybody’s ever asked me that. I would tell myself it’s going to be worth it. I would remind myself of my other children and how it’s going to impact them and I would just remind myself that I needed to be patient.

Oh boy. I think I’m largely still the same person when I was first diagnosed. I was diagnosed about six years ago and they think that I’ve probably been having seizures since I was a child, but things weren’t caught. So I think I would just say, hey, do you know what, you got this, as long as you keep going forward and coping and being faithful that you’re going to get through this and it’s not a big deal, you can manage it. I feel like I’ve come to terms with the fact that I have epilepsy. It’s just a part of me and that I cope and do everything I can and do the best I can. But sometimes life is unavoidable, but keep looking forward and things will eventually be on the upswing or you’ll learn to cope with it.

When I was first diagnosed, if I could go back to that time, I would let myself know that everything’s going to be okay. When I was first diagnosed, I thought my whole world was crashing down. I was very upset. I didn’t know what was going to happen. And I needed counseling, I needed a lot of things. So I would just let myself know, back when I was 18, that things will be okay. Things will end up happening for the best, and I will make the best of myself. And how I feel now is I’ve accepted that I have a disability of epilepsy. I’ve accepted that seizures are going to be a part of my life. And I know that that is something that is a package deal for me.

Oh well, I don’t regret anything that I decided to do with my son. I would probably tell myself to trust in the choices that I made, and trust that I’m not crazy when I see the things that I see with my son. And in the end, because this is such a rare disorder, I really… I am his best advocate, and I’m really the only person that notices the things that are going on with him. That doesn’t mean I’m wrong, that just means… This goes back to this is a rare disorder that people just don’t understand, and that’s okay. I used to beat myself up a lot about how… I was just so angry, was a guinea pig, and I still don’t like that, but I also appreciate the value of being able to provide evidence towards something better and towards a cure. I just tell myself that, again, it’s going to be okay. It’s going to be hard, and it’s never going to not be hard, but that I’m not wrong and I need to trust myself.

I really don’t think I’d want to travel back in time, to tell my person…Tell me back then what I’m going through now, because the naivete that I had about the whole situation actually gave me the courage and strength to continue going forward and trying to find solutions and resolutions. I guess I would encourage my younger self to just do whatever it would take to do, but I don’t think I would explain what was going on know now because I think in that situation, ignorance is bliss because it’s exhausting. And after these 40 years, we’re still in it and still living it and I don’t know that it would have helped me to know in my early twenties, what I would be doing in my sixties.