living with epilepsy - how do you sleep?

[vikingmom]

Help, an asteroid hit us! Or so it feels.

 

Our 6 y/o started having seizures out of the blue last week, and was diagnosed per EEG with Rolandic epilepsy. (Still awaiting MRI results, which may or may not change diagnosis, for there are some symptoms inconsistent with Rolandic.) While I understand (and am thankful) that this kind of epilepsy has a good prognosis, I am still pretty frazzled in figuring out how to LIVE from here on out. The neurologist said to continue life as normally as possible... but how to do that when we can expect a seizure any moment?

 

The seizures he has had have been mostly while falling asleep, but they said with his brainwave pattern (some atypical waves after the spikes) we cannot rule out nocturnal seizures (because something else in addition to Rolandic could be going on), and that timing each seizures was of utmost importance. So I have watching him like a hawk at night, fearing that I will miss a seizure.

 

But this is not good... I just came out of sleep deprivation after our infant started sleeping through the night, and now I am right back there - only worse- for I was still resting while nursing the infant in the middle of the night. With this I am constantly in a state of anxiety and jumps at any and every movement my ds makes. Can you say permanent flight and fight response!?

 

Soooooooo, anyone out there with experience, ideas about how to sleep (bed alarm?monitor?), encouragement, anything... we are still processing and learning about what our "new normal" will look like. It has been a long, hard week... I need a hug.

[unsinkable]

(((Hugs))) I'm so sorry.

 

We were a family bed family when my DD developed epilepsy so that's how we monitored her.

 

Probably not much help.

[Splash]

_{My daughter doesn't have epilepsy but she did have a seizure while in the hospital and was on kepra for six months. Probably not much help be actually moved her bed into our bedroom for the first three months she was home. Now she has a couch she sleeps on in our room when she isn't doing well. I have spent many nights waking up to check on this particular child. It is exhausting. I hope someone has a great idea for you.}

[Sandragood1]

Hang in there! Believe it or not, you will get used to it. Our child also had night time/falling asleep seizures. We tried a monitor but it didn't work well- too many false alarms.

 

Since your ds is so young, I'd consider moving him into your bedroom until you get everything figured out. Or a pallet on the floor i his room for you. Keep the house quiet and if you a light sleeper you will hear if he has a seizure.

 

I can't remember whether they medicate for Roland's? Whether or not they medicate you son you may want to consider going gluten free in his diet.

 

Keep in mind that most seizures don't actually cause damage except from falling/ injury from the lack of body control.

 

There are a number of good medications that you can try. I'm sure that you will find something that works.

 

Hugs to you. I was a wreck during our initial dx but things got more tolerable with time.

 

Sandra

[vikingmom]

Thank you all for checking in and talking to me:-) He is currently sleeping on a mattress on the floor in our room. He typically shares a room with his brothers, but they are (understandably) scared to witness another seizure and have been quite traumatized by discovering the first! Though we typically embrace diet and natural remedies over medicine (unless absolutely necessary), we agreed to let him take Trileptal for lack of knowing what else to do at this point. We have been so blindsided and overwhelmed. So I am interested to hear that gluten-free may be a helpful diet to consider. It would not be too hard a switch for us, for may of our meals (but certainly not all) are already gluten free.

 

Thanks for all the hugs and it is good to hear that "the wreck" stage actually some day be overcome:-)

[sheryl]

Well, there are some standard precautions to take regardless of the type of epilepsy. Our dd has controlled epilepsy. She seized for 2007 and with the introduction of her 2nd med the end of that year, she became seizure free within 30 days or so. The doctors feel confident that, in time, she'll be able to be successfully weaned from her med. Your ds "may" have nocturnal seizures. It may be too soon to tell. Also, seizure "types" can change over time. Your son is how old? Because he just started seizing, I'd sleep in the room with him. And, YES, YES, YES, you MUST carry on life as (normal some people call it) usual as possible. These are normal kids so I like to say "usual". :) Gently here, if your child will cease, it will happen. So, you need/must carry on as usual as possible and you will need your sleep for your sake, his sake and I believe you mentioned a new baby. A seizure is NOT the end of the world. YES, it will take you time to process the reality of what is happening. My dd's neuro said to "continue" doing what you normally do. He said no horseback riding (at the time) and no swimming alone. He still says to this day: no bathing alone (she does, but at 14 I can call to her and she answers several times - so, I'm always checking that way), no swimming alone (I don't think anyone should ever be completely alone, epileptic or not), no skydiving. DD is entering her 5th year horseback riding! What I'm getting at is this. With your son - do normal/usual things, but you may want to go full steam ahead as you did pre-onset. What you do, have him close by and eyes/ears on him at all times. You don't need to fix your eyes on him 24 hours a day. You'll learn to "listen" to your environment. If you hear a thump perhaps he fell or seized and knocked something over. When our dd was seizing she was NOT sleeping well (she did NOT have nocturnal episodes) and would wake up early. One morning I walked downstairs and into the kitchen. I saw cereal all over the counter. She was shorter and as was typical then b/c this was 5/6 years ago and she was younger/shorter, she would climb onto the counter to get the cereal box from the cabinet. Obviously she seized - I'm just thankful she did not get hurt. Perhaps a monitor or alternate with your dh to sleep with him at least the first couple of weeks. There's so much to say. You'll get to recognize "how" he sounds, looks, acts, etc when is seizing. Hopefully your ds's dr will find med/s that will help him. I sure he will. Just maybe hang back for a couple of weeks and allow yourselves to regroup. Then, I'd start introducing events, activities, things, school, etc. his way. Not all at once to overwhelm him. I will validate you here by saying (gently again and with a hug) that it was a terrifying time for us and mostly me as I'm the wife/mom and home with my child. Now, take the info. you get from others and try to paint a picture in your mind. Bottom line is, you and your family will be fine. It may take time to feel that way again. I'm here to encourage you to hang in there and that's why you may just want to sloooooooow down for a bit and resume your "usual" routine in a few weeks after you've had a chance to assess the situation and learn info from what you've researched. HTH :grouphug:

[Whereneverever]

We have a monitor that goes under the mattress and alarms. It was the only way I felt comfortable stopping co sleeping.

[unsinkable]

No offense to others' experiences but viking mom is brand new to this epilepsy diagnosis. Please reconsider mentioning death.

[Whereneverever]

No offense to others' experiences but viking mom is brand new to this epilepsy diagnosis. Please reconsider mentioning death.

 

And some of us who have been living with this for a long time still don't like to dwell on that.

[unsinkable]

And some of us who have been living with this for a long time still don't like to dwell on that.

 

Exactly.

[sheryl]

Well, my oldest had seizures when he was a baby and then a couple of times when we were trying to wean him off the medications. I just decided that I couldn't live my life being scared to death. I thought, "God loves him so much more than I do. He knows what is best and if he chooses to take him, then so be it. " I took the precautions people took above but really we lived a normal life. I knew that I couldn't watch him 24hours a day and just had to trust God. I just couldn't live my life being scared 24/7 so I gave up control. That baby just graduated and has been seizure free for 16 years.. But as he heads off without me, I have been reminded of how I had to live when he was a baby. I can't be with him anymore, and I just have to trust God. Hang in there!

 

well said.......that "is" living by faith. so glad all worked out for y'all. it's hard and there is no way around it. To the op, there are people who do not respond to meds, but most do, I believe. and, for on-set as a child I believe it's more promising. hopefully asta will chime in, she's really the one and only on wtm whose opinion I most respect on the matter of epilepsy. she is the go-to woman, hands down.

[LostSurprise]

Its fairly common for parents of children with night seizures to either share their bed with their child, set up a bed in their room, or trade off sleeping with the child in the child's room.

 

The good thing about night seizures is that they generally come in light sleep, so most seizure activity will be within the first 2 hours of sleep and the last 2 hours of sleep. Remind yourself of this when you wake up in the middle of the night. Its possible that its a seizure but its less likely than in the windows I mentioned above.

[Whereneverever]

http://www.emfit.com/en/care/products_care/epilepsy-monitor/

 

This is the monitor we have. It only helps with seizures with motor activity, but it's been really reliable and effective for us without a ton of false alarms.

 

So sorry you are going through this, mama.

[Hot Lava Mama]

Sending my prayers to you. My ds was diagnosed with the same thing at age 7. I also felt like my world was rocked! I wasn't able to even complete a single sentence for months without crying. Here's the good news: if you have epilepsy, that is the "best" kind to have. The remission rate is very, very high.

 

My ds took about 6 months before we got the right medicine to control his seizures. During that time, he slept with us. I also didn't sleep a wink. Do remember, though, that these type of seizures are most likely to happen when the child is going down to sleep, or just waking up. You will learn to watch carefully at those times. Also, you might strongly consider having a medic-alert bracelet. Some of the epilepsy medicines do not mix with other things. If there were ever any accident and your child needed something, the paramedics would look for the bracelet. Also, if you aren't around, this will help if he had a seizure and people around him did not know he had epilepsy.

 

The good news is that my now 14 year old son has been seizure free for almost 3 years. When the child goes through puberty, many of the brain pathways go away, leaving that "patch" without any connections. Some books say that the epilepsy is "cured", but you have to remember that it is still "there" and can be accessed if the child later uses drugs or alcohol. Start preaching now about NO drugs or alcohol. Let your child know when they get older that he has significantly more to loose if he uses drugs. The epilepsy will come back and won't go away again.

 

There is life with epilepsy. The biggest thing is to treat your child as "normally" as possible. Your reaction is huge. If you treat it like it isn't a big deal, your son will learn to deal with it like it isn't a big deal. If you need to cry, go in another room. Come out when you are done and go on with life.

 

I will tell you what my ds doctor told us: "It's going to be o.k. HE is going to be o.k."

 

Even if he doesn't "grow out of it" (remember it is just in remission), there are tons of very good drugs out there to control it. (By the way, we used Trileptal (I can't remember how to spell it!) and it seemed to have the least side effects and we were able to use a very small amount.)

 

I hope you find peace in dealing with it. Look forward to being in my place a few years from now. Be strong for your son.

 

Good luck.

Hot Lava Mama

[Whereneverever]

Have you gotten any books yet? Something like this may really help. http://www.amazon.com/books/dp/0060538481

[Hot Lava Mama]

Have you gotten any books yet? Something like this may really help. http://www.amazon.co...s/dp/0060538481

 

Be careful with some of the library books! I remember the first thing I did was got a ton of books from the library. The problem was that they were very old. The reading was making me almost suicidal! They did not have any current information and were still talking about epilepsy as "possession" and crazy stuff like that. They also were not up to date on the prognosis of the different kinds. Ask your doctor for a recommended book.

 

Hot Lava Mama

[Whereneverever]

My library at the time had the sweetest librarian and the tiniest selection. The books were horrible. That one isn't really scary, although it isn't very up to date. Even the Cleveland clinic's book is three years old at this point.

[trulycrabby]

No advice, just wanted to offer my best wishes and support!

[unsinkable]

well said.......that "is" living by faith. so glad all worked out for y'all. it's hard and there is no way around it. To the op, there are people who do not respond to meds, but most do, I believe. and, for on-set as a child I believe it's more promising. hopefully asta will chime in, she's really the one and only on wtm whose opinion I most respect on the matter of epilepsy. she is the go-to woman, hands down.

 

sheryl,

 

I'm sorry you think it's OK to mention death from epilepsy and support others like seeking54him who are also mentioning death. It is inappropriate to mention in a thread to a mom who is new to all this. it is also hurtful to those of us whose children will NOT recover from epilepsy.

 

asta is brilliant. She is a wonderful resource with much knowledge. I hope she chimes in, too.

 

But there have been many of us, sheryl, who have offered advice, supported you and prayed for you and your DD and family thru the years. How awful it feels to know that all of that meant nothing to you.

[Jean in Newcastle]

No offense to others' experiences but viking mom is brand new to this epilepsy diagnosis. Please reconsider mentioning death.

 

What in the world are you talking about? She used an expression "scared to death" to talk about her own feelings of being scared, not about any possibility of that outcome. You are the one who is actually making that leap and making that come to the foreground. She then talked about how she coped with those feelings through her faith. You may or may not cope with feelings in the same way but in no way was she trying to scare the OP.

[unsinkable]

 

 

What in the world are you talking about? She used an exp<b></b>ression "scared to death" to talk about her own feelings of being scared, not about any possibility of that outcome. You are the one who is actually making that leap and making that come to the foreground. She then talked about how she coped with those feelings through her faith. You may or may not cope with feelings in the same way but in no way was she trying to scare the OP.

 

What are YOU talking about?

 

"If your child will cease, it will happen."

 

"If God chooses to take him, so be it."

 

Those are what I am talking about. I'm trying to protect vikingmom...what are you trying to do, besides call me out?

[Quiver0f10]

Hang in there! Believe it or not, you will get used to it. Our child also had night time/falling asleep seizures. We tried a monitor but it didn't work well- too many false alarms.

 

Since your ds is so young, I'd consider moving him into your bedroom until you get everything figured out. Or a pallet on the floor i his room for you. Keep the house quiet and if you a light sleeper you will hear if he has a seizure.

 

I can't remember whether they medicate for Roland's? Whether or not they medicate you son you may want to consider going gluten free in his diet.

 

Keep in mind that most seizures don't actually cause damage except from falling/ injury from the lack of body control.

 

There are a number of good medications that you can try. I'm sure that you will find something that works.

 

Hugs to you. I was a wreck during our initial dx but things got more tolerable with time.

 

Sandra

I agree. My 13 yo started having seizures a few years ago. He also only has them as he is falling asleep. We did have him sleep in our the first few nights until we knew what was going on. You do get used to it. :grouphug:

[Whereneverever]

 

 

What in the world are you talking about? She used an exp<b></b>ression "scared to death" to talk about her own feelings of being scared, not about any possibility of that outcome. You are the one who is actually making that leap and making that come to the foreground. She then talked about how she coped with those feelings through her faith. You may or may not cope with feelings in the same way but in no way was she trying to scare the OP.

 

 

Seeking54him also mentions God taking the child if it is his will... I assumed that meant death. What else would that mean?

[vikingmom]

http://www.emfit.com/en/care/products_care/epilepsy-monitor/

 

This is the monitor we have.

 

 

 

Thank you! I was going to ask you for a link:-)

[Whereneverever]

 

 

Thank you! I was going to ask you for a link:-)

 

 

It's expensive but has a lot of settings options- you adjust it by the child's weight and how long you want to have it alarm after. So, it won't alarm if they flop over in bed, but fifteen seconds of fast motion makes it go off, if that makes sense.

 

It's been a sanity saver.

[vikingmom]

I just wanted to thank everyone who responded. I experienced every response as heart-felt and well meant, whether it was sharing a personal experience or encouraging/ gently protecting me. I am scared, yes. I am a physical therapist and well acquainted with the facts, but when the facts becomes part of your life and shakes your child, it is somehow very, very different. I am thankful to learn from you all and there is great comfort in knowing that we are not alone in this maze we are trying to navigate. I suspect I am going to lean on you all a lot in weeks and months to come...

 

OK, off to cry bit...

 

[Mergath]

After I first started having seizures at around twelve or thirteen, I had quite a few at night. My mom didn't even know I'd had them until I didn't get up the next morning, and nothing could rouse me. (I tend to sleep like I'm in a coma for twenty-four hours after each seizure, because they're very severe.) It freaked her out at first, but she got used to it. I think the important thing is just to make sure there's nothing dangerous around the bed. Keep the space around the bed free of sharp corners, make sure there's nothing in the bed that could be a strangulation hazard, go for firmer pillows over giant heaping fluffy ones, etc.

 

I've been having seizures for over a decade now, day and night both, and I'm fine. (Though it's been awhile now, so fingers crossed I might have outgrown it!) As long as status epilepticus (or whatever they're calling it now) isn't an issue, what safer place to have a seizure than in bed? :p I preferred those, because I didn't have to deal with having a sore head for days afterward.

[Whereneverever]

I just wanted to thank everyone who responded. I experienced every response as heart-felt and well meant, whether it was sharing a personal experience or encouraging/ gently protecting me. I am scared, yes. I am a physical therapist and well acquainted with the facts, but when the facts becomes part of your life and shakes your child, it is somehow very, very different. I am thankful to learn from you all and there is great comfort in knowing that we are not alone in this maze we are trying to navigate. I suspect I am going to lean on you all a lot in weeks and months to come...

 

OK, off to cry bit...

 

 

Oh, mama, I'm so sorry. Do you have a friend who can be there while you cry? It's so overwhelming. I remember feeling like my whole world was crashing down, but it will be ok. I know that seems hard to believe, but it will be.

[Peach]

Our son was just diagnosed last year, so I know, pretty freshly, where you are. I was afraid to let him get out of my sight at first but little by little, we have adjusted. We did our very best from the beginning to keep his life as normal as possible so that he wouldn't view himself as damaged or helpless or anything of that sort. It seemed really important so that he'd carry on, be a kid, enjoy his friends, etc. I think that helped him adjust faster than anything. It had been a strange time for us but we are getting to the point now that I don't worry about it every single day.

 

We had quite a bit of trial and error with his medication, since his particular brand of epilepsy seems to be all over the place, but what he has now is working for now. I'll admit though, in the beginning I was terrified. Hang in there and remember that you have to keep your own strength up too. I found some cool videos on YouTube of kids discussing having epilepsy and how they deal with it and how they are still just normal kids like anyone else.

[Whereneverever]

After I first started having seizures at around twelve or thirteen, I had quite a few at night. My mom didn't even know I'd had them until I didn't get up the next morning, and nothing could rouse me. (I tend to sleep like I'm in a coma for twenty-four hours after each seizure, because they're very severe.) It freaked her out at first, but she got used to it. I think the important thing is just to make sure there's nothing dangerous around the bed. Keep the space around the bed free of sharp corners, make sure there's nothing in the bed that could be a strangulation hazard, go for firmer pillows over giant heaping fluffy ones, etc.

 

I've been having seizures for over a decade now, day and night both, and I'm fine. (Though it's been awhile now, so fingers crossed I might have outgrown it!) As long as status epilepticus (or whatever they're calling it now) isn't an issue, what safer place to have a seizure than in bed? :p I preferred those, because I didn't have to deal with having a sore head for days afterward.

 

 

I just want you to know how grateful I am for adults like you who discuss this so freely- I told my dd a little about you and she's so happy to know how well you live your life. She has so many questions about being a grown up and the more grown ups she hears about the more happy she is.

 

So thank you, Mergath.

[Mergath]

I just want you to know how grateful I am for adults like you who discuss this so freely- I told my dd a little about you and she's so happy to know how well you live your life. She has so many questions about being a grown up and the more grown ups she hears about the more happy she is.

 

So thank you, Mergath.

 

 

No problem! Happy I can help in some small way. :)

[Splash]

It h as been almost a year since my daughter's diagnosis with aHUS and being in the hospital PICU I still cry at the drop of the hat but it is getting better. I can breathe now and am beginning to find our new normal. She is doing well, disease under control more or less. Back to her previous activities, time with friends, etc. It does get easier or maybe you just get used to it as you learn how to mange it and keep them healthy. It helps to have other mom's who have been through something similar to talk to and just cry. Other thing we work on is helping dd cope and see herself as "normal" and more than just her disease. For awhile after hospital that is all she wanted to talk about but other kids didn't know what to do with that info so it was rough. She has had to learn who to talk to about it and who really just isn't the right person. She did keep asking to meet other kids with her disease. Since it is so ultra rare doctor didn't have any other patients with it but she did get her a spot in one of the Serious Fun Network camps for kids with chronic life threatening diseases (for her kidneys) this week and we pick her up today. She was so excited. Her councilor actually grew up attending the camp too and is now a nursing student. How great is that.. Anyway don't know why I'm sharing all this but just want you to know it does get better and build your support systems.

[Hot Lava Mama]

OK, off to cry bit...

 

My heart breaks for you.  I was where you are now.  It's been years, but I remember like it was yesterday.  I cried, and cried, and cried. 

 

I remember literally dropping into the chair so I didn't pass out when the doctor came into the ICU and told us.  I was stunned! 

 

I came home and cursed out God.  How in the h#ll could he do this to a sweet, innocent little boy.  What did he do to deserve this.  Was this somehow meant to punish me?  I was so VERY angry!  I was so VERY heartbroken.  I was SO very lost!

 

Then, after he came home, I remember looking at my calendar on a regular basis and remembering how "normal" everything was just a few days ago. 

 

I remember looking at my nephew (also the same age as my son) and being angry when his parents said, "Sorry", because I figured they didn't mean it because their kid was "normal" and they were just glad it wasn't "their" kid.  (Obviously, my kid is just as "normal" as anyone else, but that feeling did go through my head during my time of extreme stress.)

 

I remember crying on the phone, crying in my closet, crying in bed.  I felt so helpless and lost.  I knew "I" could handle "hard" stuff, but this was my baby.  How could that happen to such a sweet, little thing. 

 

The worst part was the realization that nobody could tell me at some point, "It's over!"  There just were no answers.  The doctors could not tell me for sure what would happen.  We didn't know for sure if the medicine would work.  They could just tell me "generally", this is what happens.  I have always been someone that looks towards that "goal".  In this case, there wasn't any.  We had to just live day by day and see what happens.  That was the hardest part.

 

My reason for telling you this is to show you how desperate and helpless (and hopeless) I felt.  The thing that kept us together was keeping everything as normal as possible.  I tried not to "over-protect" him (even though we did heed the warnings about showering alone, swimming, etc.), I tried to make him go back to everything he was doing before.  I tried very hard not to dwell on it.  I wasn't very successful at first.  But as time went on, life went on.  You get used to it.  You deal with it.

 

It's so very new to you.  It's going to hurt.  Realize that you will cry.  You will want to shield your child from harm.  You will want to "go back" to the days before this happened.  You can't do any of that.  You have to just go forward and be strong for your child.  Cry, then dry your face, put on a smile and go out and pretend everything is normal.  After a while, it will be normal. 

 

You will be o.k.  You will get through this.

 

Some day, you will look back on this and you will see how strong you have become.  You will see how much you have grown.  You will see these same things in your child.  It will be o.k. 

 

Hot Lava Mama

[vikingmom]

Thank you for your honesty, Hot Lava Mama:-) I really appreciate you sharing your journey and acknowledging the ups and downs of it.... the reality of how hard it is right now... and the hope that we will get used to, survive (and maybe even thrive?) in the "new normal". Thanks for hugging me with your words and presence:-)

[Catwoman]

What in the world are you talking about? She used an expression "scared to death" to talk about her own feelings of being scared, not about any possibility of that outcome. You are the one who is actually making that leap and making that come to the foreground. She then talked about how she coped with those feelings through her faith. You may or may not cope with feelings in the same way but in no way was she trying to scare the OP.

  

What are YOU talking about?

 

"If your child will cease, it will happen."

 

"If God chooses to take him, so be it."

 

Those are what I am talking about. I'm trying to protect vikingmom...what are you trying to do, besides call me out?

 

I must admit that I was uncomfortable with the death references as well. I am absolutely certain that Sheryl was trying to be supportive and didn't mean to further upset vikingmom when she posted, but if I were in vikingmom's shoes right now, I would not want to hear anyone say anything like that, especially now, when all of this is new and terrifying for her.

 

Vikingmom, I don't have any experience to share or any advice to give you, but I wanted to send you some :grouphug: and my prayers for both you and your precious dd.

[TeacherZee]

I have no experience myself, and no practical ideas of how to help BUT I by chance read this blog today and it has a happy ending epilepsy story so I thought it might help you to follow this mom's story. She doesn't write much about the practical bits of her sons diagnosis because she wants to protect his privacy but she does write about her own feelings.

 

HTH

 

[unsinkable]

 

I have no experience myself, and no practical ideas of how to help BUT I by chance read this blog today and it has a happy ending epilepsy story so I thought it might help you to follow this mom's story. She doesn't write much about the practical bits of her sons diagnosis because she wants to protect his privacy but she does write about her own feelings.

 

HTH

 

I'm so happy for this family. Good for their little boy!

 

I hope that everyone with epilepsy can be seizure free someday!

[VaKim]

I have no experience with my children having it, but I had epilepsy myself. I had absence seizures for as long as I can remember (though I had no idea that is what they were.) I remember telling everybody that I felt like I was dreaming and that nothing was real. People who saw me said I would be just staring. My parents thought I was just being a silly kid until I had my first grand-mal (don't know what they are called now) at age 17 in the night. Mom only knew because I fell out of bed and made a big noise. She took me to the doctor where I was diagnosed and they put me on some kind of med that I ended up allergic to. The seizures continued, always at night, and we put my mattress on the floor. Mama was just all practical about it and didn't tell me until years later that it scared her to death to see me having a seizure, so I never really even thought about them at all. I was finally put on Dilantin (phenatoyn, which I can't spell, lol), which controlled the seizures pretty much completely. I hated being on meds and having to keep going to the doctor, however, so every now and then, I'd cut back to see what would happen. I'd always end up having absence seizures again and know it was still there. Well, the good news is, ten years ago, when I was 37 years old, I stopped the meds and never had another seizure. When they told me I might outgrow it, I sure thought it would have been a bit sooner, but I am thankful.

 

Anyway, all this to say, I lived a perfectly normal life, even when I was having the seizures. It was just a "normal" part of my day-to-day, just like the fact that I have to wear contacts or glasses to see. As someone earlier said, you will get used to it. It just doesn't seem like it right now. But you will.  :grouphug:  

[*~Tina~*]

My dd began having seizures at 8. I remember how terrifying that was. She sleep in our room on the floor for a while and I rarely slept. After a while, she moved back to her room and we used a baby monitor (just made us both somehow feel more secure). It took me a good year or so to begin to adjust to our new normal. Everything about life as I knew it was turned upside down in an instant. It was terrifying. Now, it is just something we realize is part of our lives. I say "our" because it really does impact the whole family. We have tried many med and combinations to no avail. My girl had a VNS (vagus nerve stimulator) implanted in November 2012 and it has helped to some degree, but her seizures had grown continuously worse the year prior...so I guess it evened out anyway. It is hard...some day harder than others. My heart goes out to you and I extend you a BIG hug!! We've been through all the ups and downs...you will grow through this and learn to take it day by day. 

[vikingmom]

I have no experience myself, and no practical ideas of how to help BUT I by chance read this blog today and it has a happy ending epilepsy story so I thought it might help you to follow this mom's story. She doesn't write much about the practical bits of her sons diagnosis because she wants to protect his privacy but she does write about her own feelings.

 

 

Thank you for taking the time to share this, and that you care! Indeed a hopeful story:-)

[vikingmom]

Anyway, all this to say, I lived a perfectly normal life, even when I was having the seizures. It was just a "normal" part of my day-to-day, just like the fact that I have to wear contacts or glasses to see. As someone earlier said, you will get used to it. It just doesn't seem like it right now. But you will. :grouphug:

A great and helpful perspective... thanks for sharing! And thanks for the hug too:-)

[vikingmom]

My dd began having seizures at 8. I remember how terrifying that was. She sleep in our room on the floor for a while and I rarely slept. After a while, she moved back to her room and we used a baby monitor (just made us both somehow feel more secure). It took me a good year or so to begin to adjust to our new normal. Everything about life as I knew it was turned upside down in an instant. It was terrifying. Now, it is just something we realize is part of our lives. I say "our" because it really does impact the whole family. We have tried many med and combinations to no avail. My girl had a VNS (vagus nerve stimulator) implanted in November 2012 and it has helped to some degree, but her seizures had grown continuously worse the year prior...so I guess it evened out anyway. It is hard...some day harder than others. My heart goes out to you and I extend you a BIG hug!! We've been through all the ups and downs...you will grow through this and learn to take it day by day.

Thank you for sharing, Tina. I appreciate you mentioning that it affects the whole family, for that is definitely my experience. It definitely is day-by-day here... and night-by-night. We moved him out of our room into the room next door, but not yet into his own bedroom... I'm the inch-worm here:-)