Awareness, Epilepsy & Struggles

Awarness Eplipsy & Struggles

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk news, information, and discussion for our community.

Being a parent of a medically complex child is an extremely difficult. To suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. Today's episode is titled Awareness Epilepsy and Struggles, and we're gonna get caught up on some awareness month information and stats.

Our guest on the show today is Amy Danner, who is the mother of an AVM survivor and epilepsy warrior. And we're gonna end with a short discussion on the prologue and current focus book, suffer Strong, how to Survive [00:01:00] Anything By Redefining Everything by Katherine and Jay Wolf. The reason why we have awareness weeks and days is to help bring a greater understanding of illnesses that affect children to the general population. Awareness days are a great time to fundraise, educate family and friends, or reach out to someone you know who is facing an illness. It's also a great time for those affected to say, Hey, this is something that I am dealing with and this is why awareness about this condition is so important.

It attaches a real face to a problem so that others will take notice. September was aneurysm awareness month. Aneurysms don't usually cause symptoms, so you might not know that you have an aneurysm, even if it's a really big one, and they can develop in several parts of your body and brain. And affect anybody at any age.

The awareness ribbon color for an aneurysm is red. Now, [00:02:00] October was brain a V M awareness month, and an A V M is also known as an arterio venous malformation. This is what my son has, like an aneurysm. An AVM can actually occur in different places in the body as well. Although the brain is the most common location, an AVM is when high flowing arteries connect directly to low flowing veins without a capillary system in between.

And this setup eventually leads to vessel failure, which also causes. Build directly into the brain, which is a, a big, big no-no. So just like with an aneurysm, an AVM usually does not cause symptoms. So you might not know that you have an avm, even if it's super large. And my son is also an excellent example of this.

So his avm, if you were gonna picture it, is three centimeters by three centimeters by five centimeters, which is roughly the [00:03:00] size of a, hence. in his brain, and yet this kid always passed each physical with flying colors and never had a headache a day in his life until the day the AVM ruptured Brain AVM is the number one cause of a brain bleed in child excluding trauma.

The avm ribbon color is maroon. Now being a stroke podcast, I think it's really important to mention that October 29th was world stroke day. Now a hemorrhagic stroke can occur when an aneurysm or an AVM ruptures and that floods the surrounding tissue with blood. The fatality rate is higher. and the prognosis is poorer with a hemorrhagic stroke.

Now, when it comes to pediatrics, pediatric stroke is among the top 12 causes of death between the ages of one and 19 years old. Unfortunately, childhood strokes are many times missed at first since there's just a strong lack of awareness that children can also have a stroke, and this [00:04:00] delays very much needed immediate medical care.

Now this month, November, is national epilepsy awareness. and epilepsy is a central nervous system neurological disorder in which the brain activity becomes abnormal, and this causes seizures. Sometimes you can have loss of awareness, sometimes not with a seizure. Seizure symptoms vary widely. This is why.

It's just something that I didn't really understand before my son's medical problems. I thought that a seizure was just like when you were shaking which is known as a tonic clonic with some seizures. Kids just simply stare blankly for a few seconds. Others do shake and there's just a lot of, a lot of ways that a seizure can present itself.

One cause of epilepsy is stroke and people with epilepsy and seizure experience so many challenges. The [00:05:00] awareness ribbon color for epilepsy is purple. Now, not all kids who suffer a stroke, who have an aneurysm or an AVM rupture are going to have epilepsy. But it is a concern for many. When we went to treat Carr's avm, for example, we were told that he had to have gamma knife radiation, and the doctors let us know that Kyler would very likely develop epilepsy from the treat.

Which he did, but they also told us that eventually he would develop epilepsy from the AV m even if we chose not to treat the avm. All right, so now I wanna welcome Amy Danner. Amy is a mother of an epilepsy and AV m Warrior. Again, thank you so, so much for spending your evening with me today.

Amy Danner: My name is Amy and I have two children. One is Aaliyah and one is Ian. And this story is basically about Ian. When a doctor and a chaplain come walking out to the emergency room and tell all five of you to [00:06:00] come into this little room, you, you start to fall apart. And when he had the a v m rupture in the left frontal lobe, he had two strokes. One in the left parietal and one in the left occipital.

Raylene Lewis: Oh, wow. 

Amy Danner: Right after that. But so, so here he is an AVM survivor. Right. Goes. September 1st they have surgery. They open the door and they don't look the same as they did when they came out the first time. And I'm like, what's wrong? Well, there's been a complication.

Like, what do you mean? There's been a complication? He said, and everything was flawless. 

Well, in recovery, we went to extubate him and he started seizing like, okay, what does that mean? Well, we can't get it to stop. Well, we've given 'em out of there and we've given them this and we've given 'em that it's not stopping 18 hours.

of seizing off and on, and they threw everything at him. Everything. He almost died. He coded twice. There's something called a V n s something. Nerve stimulator. Mm-hmm. that you, [00:07:00] it goes in the back of this nerve in your head, and what it does is it interrupts the electrical impulses of you. You go home, you have a magnet, you put it over it if you feel a seizure coming on, well, he sedated.

he's getting ready to die, and it worked. Wow. But it saved his life. That worked for a while, but still 11 meds still seizing. So he was on the epilepsy floor. He was there for 90 days, so they worked so hard to get him ready for rehab. So went to rehab at Hershey, Penn State Hershey. He was only there for three weeks because he just couldn't.

So I brought home, . A 22 year old toddler is basically what I brought home from the hospital. He was vibrant, spark, funny, everything. Getting ready to go to college, getting ready to start his life, you know, it was it. He was just amazing. He's still amazing, but he's different. Amazing. [00:08:00] Yes. Your new normal suck.

Yes. What has happened to him is horrible, but. Live your, your present, still clinging to the past and still grieving what could have been the future. You have to live each moment. My reality is not everybody else's reality. Nobody understands what you go through until you go through it yourself. You know, I have people that, oh, I understand how you feel.

It must be awful. You know, I don't wanna hear you understand. I don't wanna hear you're, , anything else I could take. But not that unless you've gone through it, you don't understand, you know, you, you just don't. And I don't want to hear, you're only given what you can handle, but you have the choice of whether or not you're gonna handle it.

So true. Or you have that choice. I could have tapped that long ago and let me tell you, there are times I wanted to tap out. [00:09:00] I just didn't wanna do it. You know, even now. , you know, he's back in the damn hospital again because he had seizures and it's like, and I. . I mean, you see 

Raylene Lewis: what seizures look like. So with Kyler, you know, Kyler has focal seizures.

When he does, he, he, it's almost like he's eating something like I can he, he becomes unresponsive, start staring into space. Yep. And then like lip smacking

Amy Danner: Ian has a lip smacking too. That's one thing I didn't realize. That was one of the things that they do. How I know and how we all know it's the seizures.

They don't respond to you, are you? . There's no yes or no. I'll pinch his toe with my nails. Mm-hmm. super hard. He doesn't even, nothing. No response at all. 

Raylene Lewis: That's, see, I say, what's my name? I'm like, what's my name? Kyler. What's my name? What's my name? No response. 

Amy Danner: Yeah. See, he doesn't really, he's not to the point where he can say that.

Yeah, his, his main word is no, 

Raylene Lewis: That's [00:10:00] the one all kids start with. . 

Amy Danner: Yeah. But that's the first one they start with. But when it's, yes, it's an emphatic yes. You know, we don't choose what happens and what we choose is how we deal with what happens. You know, everybody wants answers, definitive black and white, you know, answers.

They wanna know why it, and they wanna be able to fix it. And I think that's the hardest part of. Is not knowing why and not being able to fix it. And I've come close to nervous breakdowns. I've come close to giving up, but Ian said before the surgery, mom, I wanna, I wanna go around and, and talk to kids and, and get people to realize that a, what an A V M is and you know, how they could prevent it, blah, blah, blah.

So that was his goal. It's not just about Ian anymore, it's about every child, young adult, out. that could have that ticking time bomb in their head [00:11:00] and they don't know. And it has taken me almost, it's been 22 months, it has taken me to get to the point where my grieving for what was and what should have been is at a really good level where I'm able to handle it and I'm ready to take that next step in my life.

You know, I love the fact that Kyler is doing so awesome and that some of these kids are doing so amazingly well. But I'm. , unbelievably jealous. 

Raylene Lewis: Oh, I understand completely. Because even, even I get, you know, jealous sometimes. Yay. Kyler's doing really, really well. Kyler still has his avm. It's not gone. You know?

Amy Danner: Right. You look at the people who they were able to have their AVMs removed, and that's so hard. Like, I don't wanna be jealous. I wanna be happy, and I'm happy, but I'm so jealous. . And then I think, you know, and then I feel so bad for some of these moms who've lost their kids because I know they're thinking, I know.

[00:12:00] Because I would be thinking the same thing. Why are you so upset? You still have your son. So it's this teeter totter of emotions back and forth, up and down. You know, I really used to love roller coasters. until now. Now I'm not so sure. I mean, zero out of 10. They pretty much suck right now. You know, I don't recommend this to anybody.

Raylene Lewis: One Star. 

Amy Danner: Not even. You know, I just, I know those things were like, if I could get zero stars, I would. Yeah, that's this. You really learn what you're made of when something like this happens, you know, we get smashed into a million pieces and we get put back together again, but there's so many pieces missing now, and we're not put together the same way we were before. Yeah. 

Raylene Lewis: It's completely different, completely different life.

Amy Danner: It's, and this is our life now, and that's okay. I finally am able to say, this is our new normal. Do I like it? No. Am I [00:13:00] grateful for it? I'm grateful he's here. I'm grateful that I could be the one to take care of him.

I'm grateful for everything he's taught. , you know, through this whole thing. I'm grateful that he is bringing so many people together throughout everything, but I'm angry. I'm grief-stricken. I'm sad, and some days I'm done. You know, caregiving is a really hard thing. Absolutely. You know, these kids are so incredibly strong.

They fight with every ounce. Every ounce in. they fight. And you just need to realize that, that they can, if they can do it, do it. You need to fight with them. 

Raylene Lewis: If somebody wants to follow your story or reach out is there a way that they could get ahold of you?

Amy Danner: Right now it's just ian's army. If you go on Facebook, it's [00:14:00] i a n apostrophe s I think there's apostrophe. Yeah. Army. There's more than one Ian's army. , ours is private because you know how Facebook could be, get some pretty weird people, and but if you tell me on there that, you know, you heard about Ian's story or you'd like to follow him, I would be glad to. To, you know, to come in and and check it out. We will be having a website soon, which is also called Ian's Army.

It's, we actually bought the domain, ian's army.com. So we're working on the logo, which is kind of cool. It's an infinity sign, but it's made with one side is the burgundy ribbon for avm, and the other side of the infinity sign is a purple epilepsy. , so it's the two ribbons are kind of morphed together with Ian's army over.

Raylene Lewis: Thank you for talking and visiting with me today and sharing your story. 

Amy Danner: Thank you for letting, letting me talk your ear off . [00:15:00] 

Raylene Lewis: No, you have an amazing epilepsy and AVM warrior.

Amy Danner: Yes I do. 

Raylene Lewis: I'm excited to share his story. 

Our current focus book is starting the Book Suffer Strong. by Katherine and Jay Wolf, and I really didn't know about these two authors until another avm Mama sent me their very first book, which is called Hope Heals.

I was feeling very lost and adrift, and their first book definitely handed me the anchor. Naturally, I moved on to the second, though nothing like the first book, this second book has impacted me more than anything I have ever read, which is why I chose it to be the first book to focus on and work.

Katherine Wolf had an AVM rupture and stroke when she was 26 years old, so Jay. Katherine write the book together. They typically switch off on chapters and it flows very nicely together, but it's also very insightful to get each one's different [00:16:00] perspective on things. And the prologue, Jay mentions that hope prevails.

And at first I had a hard time with what that meant because, Sometimes I feel like there just isn't hope, and I feel like I have learned it the hard way that some things just can't be fixed. Jay starts the prologue by explaining that suffering takes on so many forms. It can be tempting to rank what is worthy of being deemed real suffering.

Like how many times have I wondered if I needed a reality check as to. Whether these deep eno emotional feelings were were valid or even deserved. But Jay points out that everyone, all of us, are struggling to live with realities that we would not currently choose, and this made a whole lot of sense to me.

He points out that we often isolate ourselves by saying, my pain is so big that no one understands. Or even just the [00:17:00] opposite. My pain is so insignificant, no one else is really gonna care. But in truth, these experiences, the ones that we feel most personal about, they're probably the most universal in life.

So we have to decide how we're going to deal with our suffering. Catherine and Jay recommend suffering strong, which is so much easier to say than to do, especially when things. Against our life that we've always known to be true and then they shatter part of that world that we thought was was super solid.

Jay says, we gain wisdom and a deeper appreciation for the lives we've been given as we learn to suffer. Well, not as victims, but as overcomers. Personally, I don't wanna be a victim. I wanna be an overcomer and I wanna show my children that no matter what happens, they can overcome too. The one thing that I've told my children over and over [00:18:00] with all that has happened in our life is that the circumstances.

Are sometimes totally out of our control, but our responses to those circumstances is not. That is the one thing that we have control over. We have control over how we are going to respond to what happens. I don't think that it's all talked to say that suffering does not have to be the end of the story.

But the beginning of a new one, I want to leave you with a quote today by Tim Tebow. He says, it is possible for your pain to propel you to a place of wholeness rather than defeat. And this was a quote that took me aback for a second, but I believe it really ties into what Katherine and Jay Wolf teach about when they discuss redefining your life.

When situations happen that are out of your control. As parents, we have to decide how we are going to react, and our children are gonna learn from our responses, which will affect how they look at the world and interact with it in the future. , [00:19:00] and let's face it, our reactions are going to teach them a lot, and that's what they're gonna use in their life.

Life is not fair and unexpected things happen all the time. I wanna end our time together with a motivational song recommendation. I don't play songs because of copyright laws, but there have been many, many times on this journey where a song has really spooked out to me and helped me with my day. So I think appropriate for today's podcast, I'm gonna recommend the song Don't Stop Believing By Journey.

It's a 1981 hit from their album Escape. So don't stop believing folks. And as always, if you have. Have a topic you would like to hear about, or a great song or motivational quote. Don't be shy. Share in the comments and let us know. Remember, you're never walking this journey alone. Take care of y'all.