What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?
I really can’t think of any resources. Maybe a support group because there’s not any support groups near where I live.
Ideal support would look like being connected to other families in our community who also have LGS to just have basic support for my daughter, but also for the caretakers, because sometimes when you’re caring for a loved one who has LGS, things are beyond your control. And just having someone acknowledge that what you’re going through is difficult, could be a tremendous help. And I don’t know anybody within my community at all, anybody else who lives here that struggles with LGS. Or maybe some support groups, something… I don’t know what that would look like, honestly.
I would like a money tree. Therefore, we could get everything she needed because … I’m kind of joking, but I’m kind of not, because everything we need for her is always inflated. Any adaptive equipment is always ridiculously priced. It’s a small market, so the pricing is always just absolutely astronomical for things that you would not expect to be. You just want to get a comfy chair for her, but it’s going to be $1,500 instead of $75. So everything she needs costs more, and it’s an issue and it’s a … I’m trying to get a bath chair for her so she can just take a bath and it doesn’t break my back. And it’s been, I don’t know, a seven-month process. Those kind of things. I wish it wasn’t so hard just to have the supports for daily life. I hate to feel like we are an inconvenience when all we want … We’re not asking for anything that’s outrageous. We just need to make her life comfortable and make us more comfortable caring for her. We have a very, very crappy wheelchair van and we have to keep it, even though it breaks down on us all the time because it’s her only way of getting around. And to buy a new one is absolutely astronomical. It is not a regular minivan price. And so it’s just things like that. If we had unlimited money, we would be able to do the things we need to do for her, not even buying things we don’t need. It’s just stuff that we do need just to make our life a little easier.
More one-on-one care with my child from respite or something like that. That way we can go more places, and I’d have a helping hand in the event that it was onset while we were out in public, or to get her home safely, someone could be in the backseat with her. That way, she could be watched more closer.
I think the biggest thing for us would be having an available respite care worker that would be consistent. We have been denied resources by the state because of our financial status, and it’s very difficult to find good consistent respite care workers.
Because we do have seizure control with my daughter, this one would lean more towards educational stuff, which I don’t know if you are interested in. But because she has trouble retaining and that’s why she cannot learn and she had major… it’s called sinus venous thrombosis, as a baby. When she was born, she had brain damage to the left side of her brain. And so I wish I had more of a way to teach her. I wish I knew someone that says, “This is how she will learn.” I’m not saying that that’s even a possibility, but I would love for someone to help me with that. For somebody to say, “We’ve noticed that with this in certain patients, this is the best way for them to learn.” Or, “We’ve noticed that with this, with these patients, it’s very difficult for these patients to learn.” And no matter what you’re doing, just doing something helps. And so that way I know I’m not just failing. That way I know I could just keep doing what I’m doing and that’s okay if we don’t have any progress or please help me help her progress. And that way she can feel more fulfilled. That way she can feel complete, being able to read, being able to text her friends, being able to just be as normal as possible. So I guess that’s where I would lean.
The resource that we need more than anything is help, in terms of we’ve, my daughter could really use a nurse. We had a full time nurse for about a year and she was so wonderful and she ended up moving. And so we lost her, but we have had the hardest time finding a nurse that is someone that meshes with our family well enough to spend 40 hours a week with them. But we just, we could use help. That would be delightful.
I think the best resource would be some type of app that kept everything right at your fingertips, all your insurance information, referral information, the doctor’s NPO numbers, all that kind of stuff where you can either look it up and get the information off the app. Every time you have to do a referral, having to call in and get the doctor’s NPO and their address and their phone number is very time-consuming. So some type of app that would consolidate that where you can easily get the information for the referral would be great. Also, something that tracked appointments so that you would know how many visits you’ve used in terms of your insurance would also be helpful because sometimes it gets a little difficult when you’re going to see multiple specialists too, what appointment are you on and do you still have a referral? Things like that. That would be a way you can input the information from the initial referral and then it gave you a reminder that “Hey, this is the last visit before you need a new referral.”
I guess maybe just some better support groups. There’s support groups out there, but I haven’t found the best support groups yet. Although they’ve been helpful, there may be more specialized groups that could be more helpful. Other than that, I mean, I have most of the tools I need to manage my care and manage my condition.
Something to track what seizures are specifically like, how frequently they’re there. Just someone that I can reach out to when they do occur, and understanding that’s exactly what’s happening at the time.
I honestly really can’t think of anything that I haven’t been able to find that I wish I had, and that response may be skewed because my epilepsy is pretty controlled and managed. As for an ideal support resource, I’m having a hard time thinking of one, again, that I really haven’t encountered, just because the epilepsy foundation website has been really, really helpful. The only thing that I haven’t really been able to find is any sort of support group that’s pretty active for young adults with epilepsy, like something that’s pretty consistent, not like a local group, but maybe something online where there’s more people. I haven’t really been able to find that. And I wouldn’t say it’s something that I’m lacking necessarily, but it isn’t really something that I’ve been able to find. But, other than that, I can’t really think of anything that’s really been lacking as far as support goes. I think there are a lot of really good resources. If there was one thing that I could have that isn’t necessarily epilepsy related, but more so for the medication, is maybe just resources and more information regarding newer epilepsy medications. It’s just been a little difficult navigating information about Vimpat, which is a newer medication. There’s just not really a lot of information online. And again, there’s a lot of questions that I don’t really want to bother my doctor with. So that would be nice to just have a website that compiles every single epilepsy medication, including the newer ones, with maybe personal experiences, anecdotes, things of that nature.
I think there needs to be more of a focus on mental health, the mental health of the people supporting the patient throughout all of this, and we spent time in the PICU, and we now go see a specialist at NYU. I think it would be great if there was a social worker at one of these appointments to help us with our feelings around all of this because there’s a lot of feelings around all of this. I think that ideal person would be somebody who would understand the condition and the medical needs, but could also translate that in a way that’s emotionally sensitive.
Resources to help manage my condition. Well, I would like to see a central website for collecting information about epilepsy. I have pretty much been able to find everything that I need, but I tend to skew towards low tech things. I’m sure someone’s developed an app for seizure journaling and identifying triggers. I think I know that I’ve seen that people are considering a wearable brainwave device that to help monitor one’s seizures. And that would be a really cool thing and a really valuable resource and idea to give your doctors maybe a couple of months of data to decide where your epilepsy is coming from and how it’s treatable. Because I know one of the frustrations my doctors and I have had, has been catching my seizures in the office, in the testing environment rather than outside, when it’s obvious that you’re having a seizure, I just am not hooked up to the machine to analyze things. I think at least something, like a seizure diary app or website that you can print pages out and send them to your doctor that tracks trends in, well, we’ve noticed this is a statistical, we noticed you have 60% more seizures when you report being overexerted or 60% more when you’re overheated. Probably for people who have frequent seizures, like I do, it’s very uncommon and I think it would be very hard and unusual to report all of that versus just recording I had more seizures today. This is the trigger and these are the consistent triggers that I need to avoid.
I wish there’d be a magic pill that could make people that have epilepsy not have seizures. I know that that’s pretty … is asking for a whole lot, but I wish that that would be there. Knowing that that is not something that we are going to have, having the resources that we have now in support groups and people that also deal with this has been very helpful with everything.
I wish that we had better school resources. The OT and speech therapy there is minimal. It’s embarrassing. And my son, along with LGS, he’s been diagnosed with autism, so I’ve been able to get him into a special autism school, but every place that I’ve gone to with treatment for my kiddo it’s a very specific guideline. Like, “Oh, we’re going to do this much OT and this much speech therapy and this much ABA.” It’s a very strict guideline that they follow. And, again, our kids are unique. They can go back and forth. They can regress and not be where they’re at for years again. And we need to be more accommodating and we need to be more flexible with the resources and with the therapy that’s provided. I really wish that there had been a local parent support group out here. That’s something that I tried starting a couple of times, but it’s really hard with our kiddos because our kiddos are really high need and they’re really complex. I wish that somebody like a caseworker or somebody had been assigned to us immediately when my kiddo got sick. I had to go and find all the resources myself. I had to go figure out that there was state funding, that there was all of these random state resources that nobody tells you about until you ask, but, I mean, you don’t even know to ask. I really wish that I’d had an advocate at the beginning of my journey. And I think the LGS community is trying to provide advocates like that, but it just wasn’t a thing when we first started our journey. And that would’ve made a huge difference, having an advocate in the hospital, right when my kiddo got diagnosed. I needed somebody there to guide me and help me because I was completely alone. And, again, we plowed through and [PII redacted] in a good spot now, but it was scary. And I had no idea what I was doing and I really could have used some extra support. And I wish that the state or the hospitals or something would fund specialty advocates to help guide you towards the resources and education on your kiddo’s disorder.
I’ve thought about this since I read this question, but I have to tell you, I don’t know what resources I wish I had because I feel like we’re just managing [PII redacted] situation the best we can and our responses to it and our responsibilities. I think just, I can’t think of a resource that I would want to have.