Hello. I am new to this forum. My wife and I have 4 beautiful children. Our daughter, 7 has recently been diagnosed with E. She's had 2 seizures in about 6 weeks. Her MRI was clean, her EEG had occurrences. She is on Keppra. She doing great, but my fear and Anxiety of it happening again is terrible. She sleeps in our bed at night because I am that afraid. Looking for some positive vibes, hope and advice. Thank you:woot::woot:
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Hi Philip,
Glad you are here! I am also a parent of four, youngest is 9 and has epilepsy.
I'm not going to pretend it's easy at first. It takes time to wrap your head around the new normal. A lot depends on the kind of epilepsy you are dealing with and your child's specialists. It's great that keppra is bbq working for her. That stuff is amazing, almost like magic. It worked pretty well for our child but came with a side effect that required she get off of it. These drugs really are different in every one.
Our child has disrupted sleep cycles so ends up sleeping on a mat next to our bed most nights. But she starts out in her bed. I found the disruption to my sleep when she climbed into our bed was really bad for my ability to function. Sleep hygiene is something you want to return to normal when/where possible.
Glad you are here! I am also a parent of four, youngest is 9 and has epilepsy.
I'm not going to pretend it's easy at first. It takes time to wrap your head around the new normal. A lot depends on the kind of epilepsy you are dealing with and your child's specialists. It's great that keppra is bbq working for her. That stuff is amazing, almost like magic. It worked pretty well for our child but came with a side effect that required she get off of it. These drugs really are different in every one.
Our child has disrupted sleep cycles so ends up sleeping on a mat next to our bed most nights. But she starts out in her bed. I found the disruption to my sleep when she climbed into our bed was really bad for my ability to function. Sleep hygiene is something you want to return to normal when/where possible.
Please know that any one seizure is likely to stop. If your child goes into status then having emergency medication is important.
I'm sure it helped that our child started with partials that never generalized, so she's had hundreds of events but none were tonic clonics. Now the generalized seizures she has (atypical absence and neg myoclonics) are controlled by meds. But really she has hydrocephalus and the epilepsy was diagnosed at age 6, after having 5 minor brain surgeries since ~8 months of age and at least a few months in the hospital in those years. She's had enough CTs (~30) that I wonder why she doesn't glow in the dark. So since the epilepsy is not an encephalopathy, really think we lucked out. Working with brain specialists before the epilepsy helped.
I'm sure it helped that our child started with partials that never generalized, so she's had hundreds of events but none were tonic clonics. Now the generalized seizures she has (atypical absence and neg myoclonics) are controlled by meds. But really she has hydrocephalus and the epilepsy was diagnosed at age 6, after having 5 minor brain surgeries since ~8 months of age and at least a few months in the hospital in those years. She's had enough CTs (~30) that I wonder why she doesn't glow in the dark. So since the epilepsy is not an encephalopathy, really think we lucked out. Working with brain specialists before the epilepsy helped.
There are two major classes of seizures.. generalized (whole brain) and focal/partial (seizure starts in part of the brain, sometimes spreads to whole brain). Tonic clonics are the type that public thinks when they hear the word seizure - dropping and shaking seizures. They are generalized seizures and tend to scare parents more. Other generalized seizures can be usual very brief staring (absence), myoclonics (my daughter's look like she's clumsy or fumbling), atonics (drop seizures), etc. The old (but easier) way to describe partials is to break them into simple (person is aware during seizure and can usually talk), complex (awareness is impacted, various ways it comes out) and secondarily generalized (spreads to whole brain, mainly tonic clonic).
So what kinds of seizures has your daughter had? Do you know if she has primarily generalized seizures or partial seizures? Keppra is good for treating both generalized and partial types. I am of the approach that the more one learns, the better to eliminate fears of the unknown.
So what kinds of seizures has your daughter had? Do you know if she has primarily generalized seizures or partial seizures? Keppra is good for treating both generalized and partial types. I am of the approach that the more one learns, the better to eliminate fears of the unknown.
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Hi Philip,
I agree with Hobbes it sounds like your child may be having partial seizures. I've had complex partial seizures for 44 yrs. along with absence seizures.
If you notice your child has a daydream look on her face, pupils dilated, and maybe she will smack her lips along with a little shaking this could be a complex partial seizure. If she just stares for a few seconds and then seems confused for a few seconds like she doesn't know where she is or what happened that's an absence seizure and she will feel tired and want to sleep.
Keep track of her seizures be sure and write down on a calendar what time they happen and describe the seizure, by doing this the neuro may see a pattern in her seizure. I have them every month between the 18th and the 21st and that's even after brain surgery was done. When you go to the neuro you may want to ask about the ketogenic diet this diet did wonders for me reducing my seizures the diet is high in fat but low in carbs and starch foods. It's been around since 1927 I learned about it from others in my family who had epilepsy. I wish you and your family the best of luck and May God Bless All of You!
Sue
Also keep your daughter away from NutraSweet (ex. diet soda) it has been proven that NutraSweet causes more electrical activity in the brain which can sometimes trigger seizures for some people.
I agree with Hobbes it sounds like your child may be having partial seizures. I've had complex partial seizures for 44 yrs. along with absence seizures.
If you notice your child has a daydream look on her face, pupils dilated, and maybe she will smack her lips along with a little shaking this could be a complex partial seizure. If she just stares for a few seconds and then seems confused for a few seconds like she doesn't know where she is or what happened that's an absence seizure and she will feel tired and want to sleep.
Keep track of her seizures be sure and write down on a calendar what time they happen and describe the seizure, by doing this the neuro may see a pattern in her seizure. I have them every month between the 18th and the 21st and that's even after brain surgery was done. When you go to the neuro you may want to ask about the ketogenic diet this diet did wonders for me reducing my seizures the diet is high in fat but low in carbs and starch foods. It's been around since 1927 I learned about it from others in my family who had epilepsy. I wish you and your family the best of luck and May God Bless All of You!
Sue
Also keep your daughter away from NutraSweet (ex. diet soda) it has been proven that NutraSweet causes more electrical activity in the brain which can sometimes trigger seizures for some people.
Thank you so much Sue..... I just need to understand more about them. During her EEG light flashes did nothing to her, bright colors did nothing. The only time they saw activity is when they did the breathing excercise to get her winded. That's when all her abnormalities were. Her MRI was completely clean, Praise the Lord for that. As I told Hobbes we are afraid to let her sleep by herself. That fear sets in and I become very afraid. I feel like if I'm close to her, I can keep her safe. Sounds so very silly to say. Her Neuro is of the opinion it's quite possible she will outgrow this. I pray everyday for that to be the case
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Hi Philip,
Rapid breathing can sometimes cause more activity in the brain which in turn could trigger a seizure for some people. Other foods that you may want to keep your daughter from is anything with MSG and soy that has been proven to trigger seizures for many people.
After your see the neuro and if for some reason you are not happy have your daughter see an Epileptologist which is a Dr. that specializes in epilepsy. I saw many neuros over the yrs. but I got the most help from when I saw a Epileptologist this Dr. was able to keep me on the least amount of med, and was able to pinpoint the cause of my seizures later on I was able to have surgery to reduce my seizures. I wish you and your family only the best and May God Bless All of You!
Sue
Rapid breathing can sometimes cause more activity in the brain which in turn could trigger a seizure for some people. Other foods that you may want to keep your daughter from is anything with MSG and soy that has been proven to trigger seizures for many people.
After your see the neuro and if for some reason you are not happy have your daughter see an Epileptologist which is a Dr. that specializes in epilepsy. I saw many neuros over the yrs. but I got the most help from when I saw a Epileptologist this Dr. was able to keep me on the least amount of med, and was able to pinpoint the cause of my seizures later on I was able to have surgery to reduce my seizures. I wish you and your family only the best and May God Bless All of You!
Sue
Hi Philip,
There are a lot of ways kids can 'grow out of' seizures. That's actually what they initially talked about with my kid (think that's in the intro to epilepsy spiel they give most parents, because the kids with big problems are quickly identified and rest with hard to control E also become apparent over a few years). Then after a year of not getting complete control they stopped talking about it for a few years, then things changed and now our current doc is thinking she may actually grow out of them. But no guarantees, better to take it one step at a time. First step is getting used to this new reality so you can get to a good arrangement for your family.
When our daughter sleeps in her room, it isn't far from ours and we have the doors open so I can hear if she starts vomiting during the night. Unless your child has some life-threatening issue with seizures (e.g. stops breathing), there is no reason to have her sleep in your room except for your worries. Kids pick up on parents' fears which can cause other problems so try to get to a good workable normal for your family. Our kids don't need to be afraid of epilepsy, their fears or the parents' fears should not cause kids to lose out on normal childhood experiences. That can stunt growth more than epilepsy itself. I think the grow out of it spiel is to help parents adjust. Your child is going to be great, with or without epilepsy.
There are a lot of ways kids can 'grow out of' seizures. That's actually what they initially talked about with my kid (think that's in the intro to epilepsy spiel they give most parents, because the kids with big problems are quickly identified and rest with hard to control E also become apparent over a few years). Then after a year of not getting complete control they stopped talking about it for a few years, then things changed and now our current doc is thinking she may actually grow out of them. But no guarantees, better to take it one step at a time. First step is getting used to this new reality so you can get to a good arrangement for your family.
When our daughter sleeps in her room, it isn't far from ours and we have the doors open so I can hear if she starts vomiting during the night. Unless your child has some life-threatening issue with seizures (e.g. stops breathing), there is no reason to have her sleep in your room except for your worries. Kids pick up on parents' fears which can cause other problems so try to get to a good workable normal for your family. Our kids don't need to be afraid of epilepsy, their fears or the parents' fears should not cause kids to lose out on normal childhood experiences. That can stunt growth more than epilepsy itself. I think the grow out of it spiel is to help parents adjust. Your child is going to be great, with or without epilepsy.
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Continuing..
When our daughter wakes up in the night because something is wonky with her sleep cycles (eeg shows that clearly), she will often come into our room. We now have a place for her to sleep in our room so she doesn't disrupt my sleep any more than necessary. Years of sleep deprivation have taken a toll on me. I can only help my kids when I take care of myself. Always a struggle but worth it, especially when there are four kids.
When our daughter wakes up in the night because something is wonky with her sleep cycles (eeg shows that clearly), she will often come into our room. We now have a place for her to sleep in our room so she doesn't disrupt my sleep any more than necessary. Years of sleep deprivation have taken a toll on me. I can only help my kids when I take care of myself. Always a struggle but worth it, especially when there are four kids.
Thank you Hobbes....... Like I said, this is all so very knew and I'm trying very hard to find our norm. I don't at all want to make her afraid. I guess my fear is you know the worst (losing her). I am trying to read as much as I can to understand it better and educate myself before I put myself in a home[emoji851][emoji851]or my wife puts me in home. She's an EMT so she's a lot calmer and more rational then I. Thank you for listening
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Ha ha! Freaking out from time to time is completely normal for parents 
I keep telling myself to breathe, focusing on deep breathing helps me put aside my worries for a few seconds and your body needs it. Sudoku helps for longer but doesn't help on physical side. It is going to take some time so explore ways to keep yourself in the now so you have time to adjust. Various places have primers on seizure types, epilepsy issues and patient advocacy. Epilepsy foundation is one place. Medscape has articles also. Ask your child's neurologist what type(s) of seizure(s) she seems to have, what should you be watchful for, etc... Wrightslaw has an epilepsy manual from the epilepsy foundation that covers more than you may need to know, see http://www.wrightslaw.com/advoc/articles/epilepsy.manual.pdf
Your local epilepsy foundation affiliate, children's hospital or The Arc may have a parent support group. Few support groups do just epilepsy so know there may be unexpected avenues to help you cope.
I keep telling myself to breathe, focusing on deep breathing helps me put aside my worries for a few seconds and your body needs it. Sudoku helps for longer but doesn't help on physical side. It is going to take some time so explore ways to keep yourself in the now so you have time to adjust. Various places have primers on seizure types, epilepsy issues and patient advocacy. Epilepsy foundation is one place. Medscape has articles also. Ask your child's neurologist what type(s) of seizure(s) she seems to have, what should you be watchful for, etc... Wrightslaw has an epilepsy manual from the epilepsy foundation that covers more than you may need to know, see http://www.wrightslaw.com/advoc/articles/epilepsy.manual.pdfYour local epilepsy foundation affiliate, children's hospital or The Arc may have a parent support group. Few support groups do just epilepsy so know there may be unexpected avenues to help you cope.
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Use Time As An Ally To Help Your Daughter!
Philip,
Your daughter may have had some seizures, but if you and your wife treat her like a little china doll(that can be hurt by anything she does) she may get the impression that you need to protect her from everything. This is the kind of thought that can make a child start to feel everything needs to be done for them. They can't do anything themselves. You don't want your daughter to feel like this. She needs to see that she CAN do things for herself like all of the other kids. Doing these things will give her self-confidence in herself and allow her to mature lie she should.
You need to use time to learn about E and teach your daughter that she can also learn about E.
Her getting a knowledge of her E will give her the ability learn the different ways that she may have to do certain things. Any person who has E has had to learn things and continue to learn each and every day, because advances are always being made in the treatment of E!
I have lived w/E for 50 years and I still learn things every time that I talk with another person who also has E.
This is why you can't expect everything to happen right away. These things take time and patience to work through. It you act frustrated, you daughter may think you are frustrated with her not something else! :twocents:
ACsHuman
Philip,
Your daughter may have had some seizures, but if you and your wife treat her like a little china doll(that can be hurt by anything she does) she may get the impression that you need to protect her from everything. This is the kind of thought that can make a child start to feel everything needs to be done for them. They can't do anything themselves. You don't want your daughter to feel like this. She needs to see that she CAN do things for herself like all of the other kids. Doing these things will give her self-confidence in herself and allow her to mature lie she should.
You need to use time to learn about E and teach your daughter that she can also learn about E.
Her getting a knowledge of her E will give her the ability learn the different ways that she may have to do certain things. Any person who has E has had to learn things and continue to learn each and every day, because advances are always being made in the treatment of E!
I have lived w/E for 50 years and I still learn things every time that I talk with another person who also has E.
This is why you can't expect everything to happen right away. These things take time and patience to work through. It you act frustrated, you daughter may think you are frustrated with her not something else! :twocents:
ACsHuman
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Hello and welcome!
For people who experience absence seizures, hyperventilation is a common trigger. I mention this because you stated your daughter has had "staring" seizures.
And it will take time to adjust to your "new normal" and it's okay to be scared and concerned. With time, you will get "used to it" (I don't think anyone gets used to epilepsy, especially since it is so unpredictable and seizure type/s and frequencies change) and can become a more proactive parent and will figure out what is best for your daughter. It does take time though.
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I'm not sure how much help this will be because I was 27 when I had my first seizure, 13 years ago, and your daughter is only 7.
My very first seizure was a tonic clonic and I had to be put into a coma for about 3 weeks before they managed to get the seizures to stop happening one right after the other. It was another few weeks after that before I was able to come home.
After that my seizures were mostly simple and complex partial and was having them quite frequently, usually only a day or two apart. I was still having some tonic clonics but not that often. It took a few years before my neuro found the right meds to get them under control. I'm still having seizures, on average 5 a month and they are usually only complex and simple partials. I am still having tonic clonics, maybe 2 a year. My seizures aren't as bad as they weren't in the beginning and they don't last nearly as long.
During a seizure I'll just stare off into space, my eyes might twitch and I'll smack my lips together and sometimes an arm or leg might shake a little.
At first my parents treated me like a child. They didn't let me out of their sight. If I was in the bathroom taking a shower my mom would sit in there with me. I slept in my bedroom by myself but I know one of my parents sat outside by the door all night.
It took a while before they realized that I was going to have seizures, wither they were looking or not, and there wasn't anything they were going to be able to do about it. They started letting me do things on my own then.
I try to get enough sleep and stay away from caffeine, they are things that can cause people to have seizures, especially me. Make sure you keep track of your daughters seizures and what she does during them. Let her neuro this when you see him.
My husband's father has epilepsy but he only had seizures when he was younger. I don't know if you want to say he grew out of the seizures or not? He also doesn't take meds anymore. This is something that might happen with your daughter or it might not.
There are people who take Keppra that have no problems with it and others do, I guess it depends on the person. I'm on it and the only real problem is it makes me angry very easy, the nickname is Kepprage. It doesn't take much to set me off and I have a very hard time being around children. My husband has realized it's the Keppra that does it and there's really nothing I can do. I think it's because he's with me more often and he goes to my neuro appts with me so he's learned a good deal about my meds and their side effects. Even though we've told my parents this they just think I like yelling at people.
Good luck and I hope things go well with your daughter.
My very first seizure was a tonic clonic and I had to be put into a coma for about 3 weeks before they managed to get the seizures to stop happening one right after the other. It was another few weeks after that before I was able to come home.
After that my seizures were mostly simple and complex partial and was having them quite frequently, usually only a day or two apart. I was still having some tonic clonics but not that often. It took a few years before my neuro found the right meds to get them under control. I'm still having seizures, on average 5 a month and they are usually only complex and simple partials. I am still having tonic clonics, maybe 2 a year. My seizures aren't as bad as they weren't in the beginning and they don't last nearly as long.
During a seizure I'll just stare off into space, my eyes might twitch and I'll smack my lips together and sometimes an arm or leg might shake a little.
At first my parents treated me like a child. They didn't let me out of their sight. If I was in the bathroom taking a shower my mom would sit in there with me. I slept in my bedroom by myself but I know one of my parents sat outside by the door all night.
It took a while before they realized that I was going to have seizures, wither they were looking or not, and there wasn't anything they were going to be able to do about it. They started letting me do things on my own then.
I try to get enough sleep and stay away from caffeine, they are things that can cause people to have seizures, especially me. Make sure you keep track of your daughters seizures and what she does during them. Let her neuro this when you see him.
My husband's father has epilepsy but he only had seizures when he was younger. I don't know if you want to say he grew out of the seizures or not? He also doesn't take meds anymore. This is something that might happen with your daughter or it might not.
There are people who take Keppra that have no problems with it and others do, I guess it depends on the person. I'm on it and the only real problem is it makes me angry very easy, the nickname is Kepprage. It doesn't take much to set me off and I have a very hard time being around children. My husband has realized it's the Keppra that does it and there's really nothing I can do. I think it's because he's with me more often and he goes to my neuro appts with me so he's learned a good deal about my meds and their side effects. Even though we've told my parents this they just think I like yelling at people.
Good luck and I hope things go well with your daughter.
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Hi Philip, welcome to CWE!
An epilepsy diagnosis is never easy, but I think it must be especially hard when the diagnosis is for a loved one, and triply so, when the loved one is a young child. Getting informed about epilepsy is one of the best coping strategies there is. It can help you manage what must feel very strange and scary.
Do push your daughter's neurologist for more information about the kind of seizures she is experiencing. You mentioned that the hyperventilation part of the EEG produced brainwaves that were positive for epilepsy. That would tend to suggest that she is experiencing absences seizures (perhaps atypical ones). But your neuyro should be able to explain what he/she thinks is going on.
If they are absences, and the medications don't seem to help (or have intolerable side effects) you might want to ask about trying dietary treatments such as the Modified Atkins Diet. It's shown particular promise in treating absence seizures. More info here:
https://www.atkins.com/newsroom/201...r-epileptic-children-in-indian-clinical-trial and here: http://atkinsforseizures.com/
best,
Nakamova
An epilepsy diagnosis is never easy, but I think it must be especially hard when the diagnosis is for a loved one, and triply so, when the loved one is a young child. Getting informed about epilepsy is one of the best coping strategies there is. It can help you manage what must feel very strange and scary.
Do push your daughter's neurologist for more information about the kind of seizures she is experiencing. You mentioned that the hyperventilation part of the EEG produced brainwaves that were positive for epilepsy. That would tend to suggest that she is experiencing absences seizures (perhaps atypical ones). But your neuyro should be able to explain what he/she thinks is going on.
If they are absences, and the medications don't seem to help (or have intolerable side effects) you might want to ask about trying dietary treatments such as the Modified Atkins Diet. It's shown particular promise in treating absence seizures. More info here:
https://www.atkins.com/newsroom/201...r-epileptic-children-in-indian-clinical-trial and here: http://atkinsforseizures.com/
best,
Nakamova