What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?
I don’t have a specific app or resource. We have a Facebook mom’s group for our area for kids with special needs and that resource has been really great as far as finding local things to do and different resources that are available in our state.
Honestly, I didn’t know there were resources for LGS. But if there is, I’d like to know what they are.
I would say the internet in general, I am a part of a few special needs parents’ support groups in Facebook. One for her specific disorder and that one helps a lot. The IFCR has been a helpful organization because that’s her exact disorder that causes her epilepsy. They have been a very, very supportive resource for us. If she was diagnosed probably a lot later in life, it was 2002 when she was born and started having seizures, so I didn’t really have a lot of technology like they do now. I know there’s a lot more options for seizure tracking but I do not use any of those. I still do old school, paper, and pen, but I do appreciate the internet, mostly for parental support.
The mom groups on a Facebook page that way I see that other moms are going through similar things that I am and I see how they handle it and what they’re going through and that I’m not alone in that.
We have joined a lot of groups just on Facebook alone, which have been extremely helpful. I mean, it’s parents and advocates for epilepsy. My daughter has a specific type of epilepsy where she has a lot of seizure activity at night while she sleeps, nothing breakthrough, but just a lot of, they’re called spikes in her EEG. That’s a specific type of epilepsy, so we’ve joined that support group of other parents that have the same issues, other patients. They suggest different things. They put different studies that their doctors are doing, and a lot of the things that they talk about, we can relate. My daughter has trouble with memory and with retention, and that’s why she has a hard time learning because these spikes don’t let her store the long-term memory overnight. So if I teach her all day, and I teach her a specific thing, at night, it kind of just gets erased. Knowing that this is something that happens with these types of spikes is, in a weird way, comforting, because I know why it’s happening. So even though I can’t stop it, at least I know why it’s happening. We also belong to different groups, different organizations that have helped us with getting the correct monitors for her bed to sense any activity at night. We’ve also been able to get a service dog for my daughter through other organizations. We’ve been trying our best with staying connected, learning as much as we can, and trying to educate others, as well, because there are some things that, you know, like just listening. Like if I had a friend that just called me and said her daughter was having seizures or any time I have a friend that has an acquaintance that… They reach out to me, and I say, “Yes. Please have them call me, because the things I know, I could help you with. I can tell you what test to ask for. I can try to guide you as much as I could.” That’s all I could really do, is share my experience. Hopefully, that helps someone else, because I see it being done all the time by people that have helped me, and I appreciate that.
The biggest resource, or the resources been most useful to us, has been Facebook groups, which sounds crazy but the parents in these groups are wonderful and they’ve lived through things and they offer wonderful perspective. You can ask questions, day or night, somebody’s up to help answer and they’re so good at finding out the new medicines that are coming out or new treatments and suggesting things. I mean, you have to take it with a grain of salt, but we are fortunate to be able to take that information to our doctor and say, “We heard about this. What do you think?” And then our doctor’s super supportive about things that he thinks we can try or things that we can’t. So it’s kind of like a team effort.
The two most important resources for us are a Facebook group called the LGS Foundation. I like this group because there’s a lot of parents or caregivers on there that will pose questions. And then other people answer as well as if I have a question myself, I can ask people if they’ve experienced something similar because you don’t run into a whole lot of people whose kids have LGS. It’s a good way to kind of get connected and figure out things that maybe somebody had already found a good solution to. The second one is the Epilepsy Journal. It tracks the seizures, it times them, you can put notes in, you can also put in if you’ve used a rescue med or things like that. During the chaos of the seizure, it’s just a quick way to time it and put all the information in there without having to write it down myself.
I don’t have a lot of resources, but the epilepsy website for the state that I live in has helped a lot. They have a fundraiser for a 5K, and one time I did that with my whole family, and that was really cool.
I would say some resources that are really useful are Facebook support groups that you can connect with other people with the same condition as you. It’s always nice to be able to ask questions. Obviously everybody’s different. It’s still nice to bounce ideas and just kind of chat with people that have the same condition. As well as my medical ID bracelet and the associated app and profile. That’s a big thing for me in allowing me to feel safe and allowing me to go places and not be worried. So that’s another big one.
I don’t really have any external resources. For the most part, I ask doctors questions. I search multiple websites. I guess one of the best websites that I use is WebMD. And when it comes to medications, I search what is suggested to me.
Out of all the resources that I have used throughout the few years that I have had epilepsy, I would say probably more than anything epilepsy.com has been really, really useful. It’s run by the Epilepsy Foundation and anytime that I have a question about anything that I wouldn’t want to bother my doctor with, such as, for example, the other day I was looking up if having consistent eye twitching has any sort of correlation to epilepsy. Right when I Googled that the epilepsy.com website came up and there was already a forum about it. There were already questions and answers and they have videos on their website. I really spent a lot of time perusing this website when I was first diagnosed 10 years ago. That has been instrumental to my journey with this diagnosis. It’s just been really useful and really helpful. Especially again, answering questions and doing research on things that I really don’t want to bother my doctor with.
The camp that my family has attended, that I mentioned in the other question, has been huge for us. It’s called Camp TLC, Camp Together Living A Challenge. We met other families who didn’t have the same conditions that we were dealing with, but other serious conditions. We laugh together. We cry together. It’s been such a gift.
I think like the CDC and the Mayo Clinic’s website have been really helpful with ideas on how to manage epilepsy and strategies. I haven’t really found so much an app, but a notebook and a piece of paper that I write down the seizures that I notice and like if I did too much that day to help identify the triggers. I think there are some apps and that that now will help you do that for you. But like, first of all, like going low-tech and just writing it in a notebook was all that mattered. I can’t say a specific organization, but one thing has been really helpful is I’m part of a drug company’s study right now, that’s basically an online support community asking us to reflect on our epilepsy. And that’s been a really interesting experience and people have shared a lot of the similar stories as I’ve had, about discrimination in the workplace and other things that have affected our lives. I think most of all, I think you need to be able to trust the facts that comes from the CDC and the Mayo clinic’s website and that. I think you get a lot of like snake oil salesman when it comes to epilepsy. And like, it’s just got to take this one herb, or there’s going to be this one magical fix to having epilepsy. And that’s just not reality. That’s just not reality. And I’m also in the camp, so I don’t think that more medication is always the better approach because of all the interactions you can get and all the neurological pathways that you’re messing with. So, I think these have been some of the most helpful things. I will say that I also use drugs.com to keep up on side effects and interactions and that. But I think those are the ones that are the most useful for me.
I’m in a support group for people that have a rare disease that causes my epilepsy that has been very helpful for me. It is through Facebook. That has been very helpful. I also found that just using the internet as a resource is great for when you don’t understand something and that you just need to look up to know what is really happening. So those are some good resources and they make you feel a lot better.
Oh, my gosh. When I first started with this journey with my kiddo, there was nothing, nothing. And it’s wild to me because this was … What, my kid’s seven now. And there was no resources. I couldn’t find anything for his infantile spasms and everything I found was just like, “Oh, your kid is so screwed. Your kid is never going to recover from this.” It was so bleak and horrible. What I did end up finding was actually a chat board that I found on infantile spasms and I joined that and then I ended up finding Facebook groups. Honestly, I found the infantile spasms and that one had branched out to the LGS community or kiddos who have aged out of infantile spasms. And joining those groups has been a huge resource for me. Wildly enough, I’ve been able to find four or five other moms in the state of Utah with kids with LGS and infantile spasms. Somebody lives 10 miles away from me, which again is crazy when you look at the numbers of infantile spasms and LGS. What are the odds? But seriously, those are some of the biggest resources for me is other parents. It’s not the doctors or the medical experts. It is parents who have been through this because we are going with our gut a lot of the time. And we had an LGS conference about this last year and it talked about how sometimes when we’re picking medications or treatments for our kids, it’s like having a dart with balloons. And we’re just throwing darts and hoping that one of them sticks or pops the right balloon. And that’s truthly what it is sometimes. And what’s nice is that these boards, they have parents on it where you can talk to them and ask them, “What’s worked for you? What’s been the best thing for you? What would you recommend? How do you get around insurance for this? Proper ways of dosing.” Like with cannabis, the doctors can’t dose it for you. You have to guess and it is ridiculous. I mean, I don’t know where I’d be without the parents, especially the IS and LGS boards. I don’t know where I’d be without them because it made a huge difference having their help and their guidance and just like a sounding board.
I think because [PII redacted] grew up and became adult pre-internet and pre-websites, I don’t really utilize them the way a lot of young mothers would utilize them. I do have a smartphone, but I don’t have any apps on it that I’m using. Back in the day, there were organizations affiliated with the Advocates for Retarded Citizens, which now they just call themselves The Arc because that name isn’t P.C. But there were parent support groups with that, that we were involved with. But [PII redacted] is 40 and I’m in my 60s. And so we just don’t really have any of those things that we’re using right now.