A question for the LGS (Epilepsy) Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

Our biggest support has been my youngest daughter, who is also my daughter’s personal support worker. Together, we work together as a team to help get everything, all of her basic necessities and ADLs met every day. We’ve had support from the doctor at OHSU in Portland, through the medicine treatments and anything else that my daughter may need.

We are very fortunate to have a wonderful community of friends and family and amazing specialists who all walk aside with us in this terrible condition our daughter has. It would be hard to pinpoint one single person, but we are thankful to have wonderful grandparents for her. We have a wonderful epileptologist that is very involved in our life and makes decisions for her best interests. We have friends who we have known along the way, some with children with similar disorders, that we are able to bounce ideas off of, which has been very, very helpful.

My family, my mom has to be my biggest supporter. She helps a lot with my child. She’s always there for the hospital stays. Then, any time that there’s ever any kind of episode that I can’t handle alone, she’s there.

Our biggest supporters have been family. They include our little guy just as much as they possibly can and they try to find different ways to support him. They come over. They help us by just giving us a break at different times. Also, I would say his therapy team and his teachers have been such amazing supporters for us. We’re in a public school and his teacher really goes above and beyond as well as his aides, to make sure that he’s included as much as possible and to really set goals that are specific to him and find creative ways that we’re able to address those goals.

If I’m separating myself as to say my daughter and I are in the struggle together and who supports us? Our biggest supporter, of course, is my husband and my son, but I don’t think of it that way. I think of it as our struggle together. My husband and I are very vocal, very attentive. We’re always looking for and trying to read articles and find out what’s new, what’s growing, what’s changing. And my husband’s very good about that, so he keeps us up to date in that point. As far as doctors are concerned, our current neurologist is very supportive. He listens to what we say. He asks what we would like to do if we do have a concern, if we have a new idea, if we have a new question, he fully listens and if we truly want to try something, like when we were trying the CBD oil, he was on board. He was very good with that until the point that he said to us, “This is no longer working. I would love to have her seizure-free. Let’s try this,” which we’ve always appreciated. Our circle of friends is amazing, as also extended family. Whenever my daughter has a hospital stay or a difficult time, if you will, if you want to call it that, and she’s hospitalized, our family just jumps in. I’m sorry. They bring us food, they help with my son. My husband and I will stay in the hospital with my daughter the whole time, we never leave her alone, and so they come and they visit and they bring my son. Our friends call, they send her gifts. It’s a very nice support group. Of course, I would say I would never want her to have this, but because she does have it and because we do deal with it, we have seen some beautiful things come out of it as well. Beautiful communities that help us. Organizations that just are there just to help you, which it’s invaluable and we’re forever grateful. So, yes, very difficult, yes. Very heavy, but we’ve had wonderful support system and everybody truly loves my daughter and she has such a bright personality, she wouldn’t say anything is wrong with her. To her, her life is beautiful so I have to follow her lead and just say, “Life is beautiful and we are blessed.” And so as far as that’s concerned, we’re very lucky to have a very strong support system.

Our biggest supporters would be our doctors, my daughter’s therapist, the people that work at the hospital, and our friends. Man, people just show up when you need them. We’ve had people fix meals, so that we don’t have to worry about it. Bring gift cards. We’ve had people that have offered to keep our other child. Doctors and therapists included have brought care packages, and just all kinds of stuff for us, anytime that we’ve needed it. And then, we have our best, best friends who are always there for us that just show up all the time, even in the really dark, crazy moments, and are just there and listen. They’re those people you can call it two o’clock in the morning and they’ll be there. So, we have a pretty good community of friends.

First and foremost, my spouse, he takes the journey with us. He’s there to take the load off. When we’re having a bad day, he’ll jump in and help. Other people who have helped support is, I have a good friend whose son also has a severe form of epilepsy, so she’s a great person to call when I have questions, if something new arises with my son that we haven’t experienced before that she might have, I can bounce ideas off of her, get some advice. We have a really good neurologist that has also been a really good supporter. We can contact her anytime by messaging her and she usually gets back to us pretty quickly with ideas or advice in terms of things to do to help them.

It’s definitely my family and my doctors, but most specifically my dad. He is the one that takes me to my doctor’s appointments and helps me through everything. And he is the one that I think understands the most, so he is definitely my biggest support system.

My family and friends are a big support. They are just there for me to talk to when I’m having flare-ups, or if I have a seizure they’re there to just kind of help me along. My doctors are also a really huge support. I have quite a medical team. And so they work very hard to keep all my conditions in check, including my epilepsy. And so I would say that they’re a really big support as well. Overall, it’s just really important that I have these people because they allow me to live the most normal life I can and that they support me. And they help me out when I need an extra hand if there’s something that I can’t do, or that I’m limited in doing because my epilepsy, there’s usually somebody that’s willing to help.

My doctor and my family. And I guess, you would count that as friends. My family is not really family, but even if that’s the case, some examples of making sure that I take my medicine, just checking on me, asking me what are doses that work when I get a new provider or my specific doctor, and just adding supplementals that will make things better, such as folic acid, or those are the best examples.

My biggest supporter specifically when it comes to my condition is my mom and my grandma, they are my rocks and they’ve supported me so much through my journey. The times that I have had seizures they have been the ones that have driven me for the six month period where I’m not allowed to drive, they have been the ones that have financially supported me when after I had seizures couldn’t work, they are the ones that accompany me to my doctor’s appointments and are there to not only financially but emotionally support me as well. Those are the main main ways they support me. And the only other factor that I think is really substantial is Vimpat. The medication that I take does not have a generic form so it can be a little pricey. And if there’s ever times where I feel it’s just not doable or within my budget to purchase them, my mom or my grandma will consistently step up and offer to pay which is really nice and a really good peace of mind that I can have every month.

Friends and family, for sure. My mother actually moved closer to us so she could help when things happened with our other children. Friends, I have friends I can text no matter what time of day or what’s going on. Our doctors, we have a wonderful team. I actually have the cell phone numbers of some of our doctors. But I also have to say other families that we’ve met through this experience. We went to a camp for families of children with special needs and medical frailty and we’ve made some wonderful supports through there as well.

I think I’ve gone through an upheaval in my life the last two years. And I think my doctor right now is probably the biggest supporter of my approach and my holistic approach. But you know what, it’s working for you. And it’s great for your unique situation. I think my doctor, who’s been really supportive of trying to treat things through diet and not because of the amount and the severity of reactions I’ve had in the past. But I think also to keep my faith community of the church a bit, and my faith has been very central to coping with this. I’m a very independent person and I try not to rely on people in everyday life, unless I absolutely have to, because I’ve been really burned that way in the past. I think that my doctor is definitely probably my biggest supporter and my biggest cheerleader and that she says, “Come on, you got this. You can keep going. You can manage your life, even with everything wrong with you.” And for that, I’m really grateful.

My biggest supporter are my family, my mom, and my sisters, and my husband. And I think that the ways that they have showed me support is that they are showing me that I am not different. I just have something that might be a little different to some people, but not everyone, and that they have showed me that I’m going to be all right.

Biggest support system has been, [PII redacted] neurologist has been fabulous. He’s always been really supportive. I have my own mental health therapy. That’s been really helpful for me to work through trusting myself and being okay with where this likely will inevitably end. And [PII redacted] team has been really helpful. His teacher, she has been very accommodating. She’ll track seizures for me and she will do the odd things that I asked her to do with him, all of his OT speech therapy. And then another huge resource for me has been my family. Dad left and definitely is not very involved. He hasn’t been involved for all of it, really. But my mom specifically has been a huge help. We have been fortunate enough to get funding through the state, and so I’m able to hire her to help with extra after-school education for my son. And then I have a brother who’s also… He’s been able to step in and take over a lot of the parenting for me as I’m trying to finish my grad program so that I can survive without their dad. And again, that goes back to what I talked about before, our society is so based on being individualistic and that’s just not a reality for my family. I need a village, I need a whole freaking township, like a whole country to help me, because I can’t do this alone. And it’s been amazing to have my, specifically, my mom and my brother have really pulled through and helped me this last couple of years, as I’ve tried to get more independence so that I can provide for my kiddos.

The biggest supporters we had was the doctors that we’ve worked with. They’ve always been able to answer our questions and have encouraged us, helped us find alternate treatments, even things outside of the seizures themselves, just other things that would benefit [PII redacted], including physical therapists, occupational therapists, language therapists, even mental health therapists. I’ve been grateful for the doctors that we’ve had, the neurologists that have been willing to look at [PII redacted] as a whole person and to help us as his caregivers.