Parent/Caregiver of children with Generalized Epilepsy: Help with safety concerns for older children with Epilepsy

TeresaF

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I don't really know where else to start but at the beginning so there's no way to make this short. I'm hoping to find out what other parents do in similar situations and finally reaching out for support. My husband and I have been together for 25 years with no family history of epilepsy on either side. We have 3 kids diagnosed with generalized tonic-clonic Epilepsy, I didn't even know that was possible. My oldest had his first grand-mal seizure when he was 15 years old and was put on meds starting with Topamax. Nine years and 5 different medications later including CBD, he still has seizures 1-2, sometimes 3 times a month. Usually within an hour after waking up but sometimes in his sleep (Scary). My 15 year old was diagnosed when he was 9 and continues to suffer from grand-mals while on medication too and my youngest, 11 years old, was diagnosed with the same type this year. This has been devastating for us and I don't know how other parents with kids that have grand-mal seizures every day deal with this issue. I have depression and anxiety from it but I'll be okay. It's my kids I worry about constantly, their safety. Living in a 2-story house, the thought of them having one on the stairs is a constant real fear and the feeling of having to watch my children get beat up by their disorder without the ability to help them or protect them is wearing on me emotionally. My oldest has cracked the tiles in the shower with his head from a fall and recently fractured bones around his eye from hitting the tile floor in the bathroom that blackened both eyes. Yesterday, my 15 year old dropped from a seizure in the morning and hit his eye on the edge of the shower giving him a massive hematoma above his eye which is now blackened and swollen shut. Three weeks ago, he was by himself after being dropped off by his bus and walking home, and he dropped in the street. Strangers nearby, noticed he was having a seizure and called 911. One of them had a brother with Epilepsy and knew exactly what to do to help. Someone was looking out for him that day! Luckily, my youngest has yet to have a seizure like this. I requested an EEG because she constantly fluttered her eyes starting when she was about 5 years old and was having the same symptom my oldest had before he was diagnosed. Randomly feeling muscles jerk and body goes limp, almost dropping whatever is in their hand, but not actually having a seizure. I bought a baby monitor which is upstairs near their bedroom to avoid constantly running up to check on them every time I hear a noise or thud. Before I bought it, I found myself on the edge of my seat waiting for the inevitable and putting my ear to the adjoining wall downstairs to listen for seizure activity. I also put foam padding on the tile floor in the bathroom upstairs to try to protect them from injuries. Having to be on high alert and hyper-focused on noises and things prevents me from sleeping very much and my grades continue to decline in my college classes. My youngest is now home schooled from a hybrid charter school where she attends 1 day a week and completes courses at home online the rest of the week because she has anxiety. It was so bad it caused stomach aches and panic attacks preventing her from going to school. Sometimes, I physically had to drag her on the ground but I hated doing that, so she racked up more than 90 absences over the last 3 years. She was afraid to go to school but didn't know why and thought she was a bad child, hating herself for it. Now she's on Zoloft, which has helped tremendously. My husband also has frequent seizures but for a different reason. He has type-1 diabetes that isn't controlled and usually has grand-mal seizures in the middle of the night when his blood sugar gets too low. I'm the only one who doesn't have any medical issues, never had a seizure, and I feel like I'm the only one taking care of everybody. I don't know what I can do to keep my kids safe, aside from wrapping everything including them, in bubble wrap. I don't want them afraid to live life so I can't do that, but I joke about it. Does anyone deal with similar circumstances? What do you do to cope and what are some of the things you do to keep your kids safe from injuries?
 

Porkette

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Hi Teresa,

Welcome to CWE! Epilepsy runs in my family have 3 cousins that have had grand mal seizures and the thing that has helped them the most is the ketogenic diet this stopped most of their seizures. Your 2 oldest kids are at the age of puberty where the hormones are changing a lot and this is one thing that can trigger seizures for some people.
You mentioned that your kids are having seizures in their sleep or right after they wake up this is called a at Nocturnal seizures and the best thing for you to do is to have both of your kids have a sleep study done along with an e.e.g. at the same time by doing this the Dr. will be able to see if the kids are having seizures in their sleep. I had this problem until I went on Vimpat and that stopped this form of seizure. As far as your son having seizures in the shower tell him to make the water much cooler. My neuro told me that hot water hitting the head can sometimes trigger seizures and I saw the same thing happen to me when the hormones were changing each month. I have both absence and complex partial seizures and the best thing I ever did was have surgery to reduce my seizures. I would have 300 seizures or more a yr. until I had the surgery then they were reduced down to 60 as of this day. Another thing my Dr. had me do is start using cbd (med. marijuana) I was amazed at how that has helped me and I buy it in a mouth spray and squirt it in my mouth 2 times a day. If you are interested check out healthyhempoil.com What I like about this company is if the cbd doesn't work they will return your money within 90 days.
As far as the safety of the kids the best thing to do is just let them live a normal everyday life. I know this sounds strange but my parents sent me to a boarding school that dealt with kids who had both emotional or neuro problems. I was gone for 3 yrs. and when I came home the family relationship was never the same. I work with kids who have neuro or emotional problems in public school and take my word the best thing to do is just let them live a normal every day life or it will bother the kids. Also just sit down with the kids and ask them how they feel about the matter and what they would like you to do. If you want to find out the cause of the kids seizures ask their Dr. to do a wada test on them this will show the cause of the seizures. I wish you and your family only the best and May God Bless All of You!

Sue
 

TeresaF

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Hello Sue,

Thank you very much for responding and I appreciate your input and advice. I'm so sorry to hear what happened to you, that must've been really hard to deal with. It's sad that your relationship with your family suffered from it. I would never send my kids away. As a matter of fact, I tend to do the opposite. I joke with my 23 year old by saying he's never leaving to live on his own, none of my kids are. But in reality, we all know that's not true. I definitely encourage them to live a normal life and not be afraid to do anything. My oldest moved out once to live with roommates but moved back home after 8 months because of the roommates. It definitely wouldn't be safe to live alone while his seizures aren't controlled yet. Even though he's taking 2 different medications regularly, he's still having them at least once a month or more. As a parent, I don't know how others cope with this. It's a lot to deal with and I have depression and anxiety from the stress of being the caretaker, but I always know things could be worse. All three of my kids have the same type of epilepsy which is generalized tonic-clonic and I'm told it's genetic. The biggest trigger of seizures for them is waking so no matter what time they wake up or what they're doing, they have always had a seizure within the first hour to 2 hours after waking up, especially if they are startled awake. They try to stick with a routine of staying in bed at least for the first hour to give them time to slowly wake and never shower right away. My son was suffering from side effects of one of his medications and his Dr. wouldn't approve the use of CBD, so he weened himself off and started using CBD only. It worked for 8 months and he started having seizures again so he had to go back on medication. We were also told it's only effective for certain types of epilepsy, not for his type. If you don't mind me asking, was the surgery you had called VNS? We're considering it because we may be dealing with medication resistant seizures but not sure yet. Again, I want to thank you for taking the time to respond to my post and I wish you the best of luck and much happiness in the future!

Teresa
 

Bernard

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Hi Teresa, welcome to the forum. It sounds like you and your family have been through a lot. My kids (2 boys) so far have not had any seizure activity thank goodness, but it's always a possibility as my wife and her maternal line have a long history of epilepsy.

... I requested an EEG because she constantly fluttered her eyes starting when she was about 5 years old and was having the same symptom my oldest had before he was diagnosed. Randomly feeling muscles jerk and body goes limp, almost dropping whatever is in their hand, but not actually having a seizure. ...
There are many different types of seizures. Everyone can recognize a tonic clonic/grand mal, but there are other types of seizures that are more subtle. What you described above could easily have been a complex partial seizure. The thing about the less noticeable seizures like complex partials, absence, etc. is that it's still a seizure event in the brain.

... I feel like I'm the only one taking care of everybody. ...
I can relate to the hyper sensitive awareness and stress for always being on alert. For me, at some point, I just realized that if it's going to happen, it's going to happen and all I can really do is respond to the best of my ability. Aside from that, we explored everything we could to try and help control the seizures including diets, EEG neurofeedback and other things. A sugar busters/LGIT type diet (try to eliminate simple carbs - sugar, white flour, etc.) helped bit. EEG Neurofeedback helped a lot until my wife delivered our first child. Things went haywire after that. 19 years later and my wife is still searching for full control, though things are much better now than they have been in a long time.
 

Porkette

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Hi Teresa,
The surgery I had done was a right temporal lobectomy. I had scar tissue on the right temporal lobe which in turn caused me to start having seizures. I started having absence seizures when I was around 10 yrs. old then 2 yrs. later I started having complex partial seizures also.
After many yrs. of seizures and no meds helping me I decided to have surgery done and my surgeon removed 75% of the right temporal lobe
and all of my right hippocampus where short term memory is. The hippocampus was removed because it shrunk and became hard after yrs.
of seizures.
To be sure anyone in your family is drug resistant have their Dr. do a DNA test. All the Dr. has to do is take some blood and get some salvia
from the inside of their mouth. This is sent to the lab where they can see the amount of enzymes in the liver along with the body chemistry
and with that info that can tell if a person is drug resistant like me but if they are not this test will show the best seizure med for the person with the least side effects. Another thing the kids can do as crazy as it sounds it take 2 tablespoons of apple cider vinegar with mother in it in the morning
and then eat their breakfast. I started doing this last yr. and I found out it reduced my seizures even more do to a protein in the vinegar. It doesn't
taste the best but I would rather use the vinegar than take a lot more meds. I wish you and your family only the best and May God Bless All of You!

Sue
 

valeriedl

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I'm the one who has epilepsy and I can't imagine what my parents, like you, went and are still going through. I had my first seizure 17 years ago when I was 27. They have no idea what caused my seizures and I was in the hospital for a month, mostly in an induced coma to stop my brain from having them. When I came home I was still having seizures left and right and my mom and dad would't let me out of their sight. If I went in the bathroom my mom would sit outside the door and come in when I was taking a shower. She slept on the floor outside my bedroom too. If we went somewhere I wasn't out of their sight.
I'd been on a ton of meds. Some helped, I'd only have 10 a month instead of 20. Others did nothing or made things worse. My neuro didn't want to do CBD so he suggested I a VNS, Vagus Nerve Simulator, which I did. It's helped me a lot. I'm still taking meds and having seizures but not nearly as many as I was.

Here's some info about it.

I usually don't know that a seizure is coming on or that I've even had it. If I do feel like I'm going to have it I'll use the VNS magnet. If someone see's me having one then they can use the magnet on me.
When I started staying home alone when they went to work we sat down and talked about the things that I should or shouldn't do while they were gone. I wouldn't go up or down the steps, don't go outside, take a shower, cook and any other things that we thought might be bad. Pretty much the only thing I don't do now is cook, and that's more of my decision than it is theirs.
I hope parents are able to give you some good advice that will help with things.
 

TeresaF

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Hi Teresa, welcome to the forum. It sounds like you and your family have been through a lot. My kids (2 boys) so far have not had any seizure activity thank goodness, but it's always a possibility as my wife and her maternal line have a long history of epilepsy.



There are many different types of seizures. Everyone can recognize a tonic clonic/grand mal, but there are other types of seizures that are more subtle. What you described above could easily have been a complex partial seizure. The thing about the less noticeable seizures like complex partials, absence, etc. is that it's still a seizure event in the brain.



I can relate to the hyper sensitive awareness and stress for always being on alert. For me, at some point, I just realized that if it's going to happen, it's going to happen and all I can really do is respond to the best of my ability. Aside from that, we explored everything we could to try and help control the seizures including diets, EEG neurofeedback and other things. A sugar busters/LGIT type diet (try to eliminate simple carbs - sugar, white flour, etc.) helped bit. EEG Neurofeedback helped a lot until my wife delivered our first child. Things went haywire after that. 19 years later and my wife is still searching for full control, though things are much better now than they have been in a long time.
Thank you for the warm welcome! Yes, you're right! When she was diagnosed the Dr. said every time she fluttered her eyes was a seizure and I couldn't believe it. She constantly did that everyday for 4 years and I had no idea that's what it was. I've been told it's genetic so I wonder how uncommon it is to have all my kids diagnosed with it but NO family history on either side. While I realize there's nothing I can do to prevent them from having seizures, I know how important it is to be there when it happens to make sure they aren't hitting their head, turn them on their side, and call 911 if it lasts more than 5 minutes or they have back to back seizures. I've prevented my oldest from falling because I was next to him when it started, caught him, and gently laid him on the floor. They stop breathing and their lips turn blue until the seizing stops so I worry about that, fearful of SUDEP. It's so hard to watch your loved ones go through that and feel so helpless. Thank you for your input and your story. I wish you the best of luck and much happiness for you and your family!
 

TeresaF

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I'm the one who has epilepsy and I can't imagine what my parents, like you, went and are still going through. I had my first seizure 17 years ago when I was 27. They have no idea what caused my seizures and I was in the hospital for a month, mostly in an induced coma to stop my brain from having them. When I came home I was still having seizures left and right and my mom and dad would't let me out of their sight. If I went in the bathroom my mom would sit outside the door and come in when I was taking a shower. She slept on the floor outside my bedroom too. If we went somewhere I wasn't out of their sight.
I'd been on a ton of meds. Some helped, I'd only have 10 a month instead of 20. Others did nothing or made things worse. My neuro didn't want to do CBD so he suggested I a VNS, Vagus Nerve Simulator, which I did. It's helped me a lot. I'm still taking meds and having seizures but not nearly as many as I was.

Here's some info about it.

I usually don't know that a seizure is coming on or that I've even had it. If I do feel like I'm going to have it I'll use the VNS magnet. If someone see's me having one then they can use the magnet on me.
When I started staying home alone when they went to work we sat down and talked about the things that I should or shouldn't do while they were gone. I wouldn't go up or down the steps, don't go outside, take a shower, cook and any other things that we thought might be bad. Pretty much the only thing I don't do now is cook, and that's more of my decision than it is theirs.
I hope parents are able to give you some good advice that will help with things.
You're so lucky to be alive! I've always said that it's harder on the caretaker than it is for the person afflicted with a disease or disorder. It's amazing to hear what your parents did because it's exactly what I've done and still do. I've sat outside the bathroom door until he comes out, stood in the doorway with the door cracked talking to him until he's done taking a shower, and wanted to sleep on the floor outside his room just to make sure I could hear him if he had one. I never got much sleep because I would wake up 4 or 5 times in the middle of the night and check on all three of my kids. The slightest noise woke me up until I got the baby monitor which I sleep with every night under my ear like a pillow. Sometimes, I wonder if I'll lose my sanity someday but I know I can't let that happen because I have to be here for them and be strong. I'm sure your parents felt the same way. And for you, it must be hard to struggle with seizures and the inability to be completely independent, but I'm glad you've found some success controlling it and gained your independence. Thank you very much for sharing your story! It's been helpful for me to learn that there's other people going through similar situations. Especially finding out other parents do the same things I do, so I must NOT be crazy. I wish you the best of luck and much happiness for you and your family!
 

Porkette

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Hi Teresa,

How's it going today? If I may ask do you or any of your kids use cell phones? The reason why I ask is sometimes a person can be cell phone
sensitive meaning when there are using their phone or are around others using their cell phone it can trigger seizures. I found out I was cell phone sensitive after seeing a pattern of seizures at work when students came to school and were using their phones before school and during their lunch periods. My neuro did an e.e.g. on me and had staff use their cell phones but I didn't know they were using them and each time any of the staff used their phone the e.e.g. showed a big spike which could lead to a seizure. It all relates to the frequency the cell phone uses. Wishing you and your family only the best and May God Bless All of You!

Sue
 
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