Living Through The Unknown @FocusthruandEvolve #epilepsyawareness #healthupdates

本站添加: 2026-05-09

[00:00:00]Let's discuss epilepsy and what we've been going through here for the past couple of weeks. Doesn't seem to be slowing down. We are still running into a number of unprovoked seizures unfortunately when it comes to my youngest daughter. We're trying to find a way out of this cycle. She was okay for a couple days and now she's back into having them. Uh today she woke up rather groggy yesterday as well. So it takes her a while to kind of get readjusted in the morning. So it's a lot more difficult to get her out of the house into school.

[00:00:35]So it's been pretty rough. I've been needless to say I've been talking to the doctors every other day for the past couple of weeks and they're trying to help. They're trying to find the right dosage. And unfortunately, when it comes to seizures, finding the right dosage is pretty much the only way unless you go into something a little bit more advanced like surgery, and that's something that's just not an option for us. So, welcome, welcome, welcome. To those of you guys who are new to this channel, welcome back to my season subscribers. My name is Kathy and on Mondays I do videos all about fashion accessories. Just fun things that I enjoy doing to keep my mind off of the second half of the week video which are all about my two girls and their journeys battling two diseases TSC and FSGS. TSC being tubercis complex or tumors that can grow in any major organ throughout your body. An FSGS being a form of kidney disease that causes damage to the gumaruli which can lead to kidney disease, kidney failure, kidney transplant or kidney diialysis depending on the disease's progression. So, if you're interested in either or, please hit the little subscribe button and hit the little bell so you get notified on all of my latest videos. And please don't forget to hit the like button and comment below. Let me know what you think of today's video. And please don't forget to comment below. Let's talk about whether or not you're dealing with something as critical as epilepsy or if you know someone in your family that's dealing with seizures and uh how are you handling them? Are you in certain medications? Are you trying to find the right dosage? Let's talk about it.

[00:02:01]and let's get started.

[00:02:04]For a number of weeks right now, I know that I've been kind of talking a little bit about Alani and her journey and what she's going through right now. She all of a sudden started to have seizures, oncoming seizures, and it wasn't very easy to recognize because a lot of it looked to be more like um anxiety attacks. So, she was kind of having a combination of both because when you tend to have a lot of seizures, you then start to get very a lot of times you get worried or scared that something's happening that isn't happening. And that's actually a lot more common than people realize because you're just afraid of the unknown and what's going to happen next. And that's really how she was. It was very, very unlike her. I didn't recognize that pattern. I never seen it before. And just her overweight just her overall way of being. L's usually just chill. Um, little bit of a clown, likes to kind of just joke around and but all of a sudden recently, she's kind of been really off, like real sad, real real afraid, real nervous. Even like when I would talk to her, she would just stop in the middle of a sentence and then look off. And these are signs that I was seeing like, okay, something's wrong. I I got to find out what's going on. And this was very common. it just started happening these past couple of weeks. So, uh the prior Thursday, she had a pretty bad seizure that night. That Friday, I kept her home from school, took her to the doctors. Uh they upped her medication, uh which was good. It was okay. It, you know, she was still having these little stare offs and these little delays and stuff, but nothing as bad as it was that Thursday.

[00:03:43]That following Tuesday, she ended up having another pretty rough seizure. I had to give her an emergency medication.

[00:03:49]called the doctor again. They upped her other meds. So, we've been kind of playing between Keer and Sinismi, which are her two one two two of her main uh medications. And right now, this is where we are, right? So, uh the past couple of days, she was having seizures.

[00:04:04]Uh last night, she didn't have one, but she was still kind of moving slow and groggy because we had to up her medication last night, and that's because she had two seizures in a row.

[00:04:16]She had one this uh today is Friday, so she had one on Tuesday and she had one on Wednesday night. And then Thursday night uh during the day, I actually spoke to the doctor uh so before that night and I ended up giving her an extra pill from by um an extra sin uh dosage which the doctor told me to give. So that I think kind of helped in subsiding her from having any type of seizure last night. Uh yesterday morning was a rough morning. It was really really difficult to get her up and going. I had to help her kind of do a couple things because she was so exhausted and very out of it.

[00:04:55]Um definitely not her norm. But this morning she was a little bit better. She was more aware what was going on. She was still tired and you know moving a little bit slow but she was a lot more responsive than she was yesterday. So that was a good thing. Yesterday I did have to pick her up from school because she did have a couple like quick seizures. So, I I I kind of figured I was going to have to, but she wanted to go to school and um this week they have MAP testing, so it's really important to be there. You know, it's kind of like you're trying to make the right decisions and you know, you're worried all the time, you know, and then, you know, today I was like, should I send her, shouldn't I? And then I was like, you know what, I'm going to send her to school. I have a very good relationship with the nurse there. She's aware of what's going through. And uh so today, so far so good. I actually have to pick her up in about 40 minutes. So, no call today. Uh, so that's a good thing. Uh, and then I will continue to monitor her and I'll give you an update next week.

[00:05:52]I'll see how she does this weekend and this, you know, upcoming week to make sure that she's doing okay. My focus right now is to make sure that Alani gets back to just having a normal everyday um just just a normal everyday for her to be happy and be okay and seizure free. seizures are are are very difficult. If you've ever seen it, been through it. Um it can be a bit overwhelming to deal with. I'm used to it. So, I'm very calm during them. Uh Alani isn't very it's not she's not having grandma's. They're very um they're very isolated. She'll either uh she'll jerk her arms a little or drag her body very lightly. It's nothing like very like um you can actually not even realize she's having if she's sitting at the desk with her head down. You probably wouldn't even realize she's having one. That's how um very subtile it can be. On occasion, you know, it'll be a little bit more obvious if she's sitting up and stuff like that. But with her, on many occasions, it's like she's out of it. She's not responsive. And a lot of times, you know, that's probably the most challenging that we deal with than anything else.

[00:07:07]Yesterday evening wasn't too bad. She was groggy like I was saying before, and that was because I had to give her an extra dosage of sin. Sinismide is very very uh prone for sleepiness and extreme tiredness. So, it's almost like a reset.

[00:07:22]Every time we up her medication, it's another reset. It's another reset. It's another reset. So, now yesterday, she got her additional pill. So that means two weeks from yesterday is when we should start to kind of see her getting more aligned or adjusted to the medication.

[00:07:38]So unfortunately, but that's how it is in the world of epilepsy. Uh the only thing you can really do is either surgery um do all you want to do all the EEGs, you want to do all the monitoring, you know, make sure you check uh the MRIs and stuff like that. you know, if you're eligible or your child's eligible to get surgery, that will help. Um, unfortunately with us, it's if they went in to take out her sega or her tuber from her brain that's causing all this these issues, it would actually regress her uh her brain functionality, which isn't an option. And then where it's located is actually very difficult to get to. they can get it but 99% of chance that they won't get the whole thing out. So we'll be doing surgery again in a few years which doesn't make any sense. So our option was Everly Lymus which has been substantial a huge impact a positive impact on our lives where her tuber has shrunk which is 100% the best option that we had and definitely uh something that I'm glad that we went with in that time because when you're nervous and you're kind of having to make a decision at the last minute and you're not sure which decision to make um you tend to you tend to um respond emotionally And I did a lot of research before I went to see the doctor that day when we found out that she her tumor had grown a lot. And uh we thought that we were going to be running into the ER or to the hospital to get surgery. We what I wanted to do was just be well informed to make sure that when I am in front of the surgeon, ask questions, understand what our options are and what would be the best option for our child. and I'm glad I did because we ended up going with the medication that I actually looked into.

[00:09:31]Uh so I think right now uh it's just a weight game in the world of technology using your phone or using your agenda to keep track of even the smallest changes.

[00:09:44]If you see your child staring off, uh, confused, not responding, if you see any differences in when you adjust the medication, extra tiredness, how long is that prolonged, right? Is it going on for a couple days? Is it just a day or two? Is it something that you're seeing constant changes or a very distinct changes? Not responsive at all, uh, very, very sleeping all day and night.

[00:10:09]So, these are things that you want to keep track of. Is your child still having seizures? what kind of seizures did you see something different, slightly different or something that's very obvious? So these are situations where it's really or these are times for me specifically um that is really really important that I jot down what's going on so that when I go see the doctor on the I think I have an appointment on the 25th or the 26th one of those days um coming up with Alani that I give them all the information and anything that I've seen that very specific to just the way she's been feeling and changes that I've been seeing. It's really important that I provide that information. One thing that we are doing next week is uh she's going to be hooked up to an EEG at home EEG.

[00:10:52]And so she's going to be monitored the entire night. So uh the way it's going to work is that she's going to have the video uh recording her just to kind of keep track of her and how this is, you know, how um you know, how she's uh how's her brain moving or how's her brain working, right? Is she having seizures? Uh what kind of seizures is she having? So the stuff is going to be able to capture that data. And then when I go see the doctor, he'll be able to go over what they're seeing, which is great because the more data, the better. And just remember that you will go through these things, right? You're going to be going through uh retrieving information, um identifying, uh clues of what's going on. These are all things that you're going to be uh capturing in during this journey specifically because when it comes to epilepsy uh there's just so much uh that you're going to have to do to uh at least whether it's slowing down or completely stopping these from occurring or reoccurring. Um, it's just you you have to be very v vigilant because if you kind of hold off and just try to push through and see if they get better, they're not going to get better.

[00:12:02]When it comes to seizures, it's unfortunately when it kicks off, it's hard to shut off. It's like it's like a broken valve, right? When it's open and it keeps the water the pressure keeps coming more and more and there's more and more water coming out. very similar to when you start having seizures. If you don't stop them quickly or try to address or address them right away, the harder it is to shut off that valve, meaning that the seizures could be consistent and constant. And then um it's just it just becomes a huge very difficult task that you're dealing with.

[00:12:40]And then it's just so right now she's dealing with the breakthrough seizures which she will be because the medication is telling your brain to stop. It's saying literally stop. Don't keep you know we're good. You want to put a block is it's just putting like a a yellow cone in front of you telling you can't park here. That's that's what the brain is doing right now to the seizures. Uh so it's really really um or that's what the medicine is doing to to the brain right now and seizures. uh just you know just chill you know let us let us work with you and let us figure something out right kind of uh trying to come up with a plan together so that we could stop it but in the world of epilepsy you know uh just taking medication is not you know it's not you know sufficient enough you have to consistently you know adjust the medication to find out what's the right dosage to stop the seizures from occurring she has gone so many years without worrying about that, you know, and just be aware that as you get older, your body changes. You know, everything is changing. Uh you're you're growing. So the medication that you may have been taking before that was working may not be working anymore. And that's that's key here with us. It's just medication is not stopping the seizures anymore. So we need to adjust them.

[00:13:59]So [sighs] yeah, it's it's been rough, you know, very stressful, very difficult. Uh, you never want to see your child have a seizure.

[00:14:08]If you've never experienced it, lucky you. You know, I envy you. So, we're dealing with it. But we're going to get through another chapter in our life.

[00:14:18]Like I told Delani the other day, as you know, as you're well aware a well aware, um, you know, we face these challenges all the time like Amber as well. You know, you know, they both are constantly facing new challenges, but we face them head on. This is just another another mountain we have to climb and we always get to the top and we always, you know, move on and and and overcome the challenges. So, we will we will get to where we need to get to and and again, uh we will get her better because that's our focus right now. My only focus. you know, I had some plans um next week and and it just I'm too afraid to to do anything because I have to be here. All right, guys.

[00:15:11]Thank you so much for taking the time out to check out my video. I appreciate every single one of you guys. Please leave a comment below. Please let me know how you're doing. Help me with the algorithm of God as I continue to grow my channel and reach 15,000 subscribers by the middle of this year, which I'm changing closer and closer. But let's talk about it. Let's let's uh let me know. And thank you again so much. And please don't ever forget to focus through and evolve.

[00:15:37]Ciao.