Epilepsy Foundation

We saw the neurologist yesterday who informed us he believes my son has a rare form of epilepsy called ESES (electrical status epilepticus during sleep). He really didn't say much about it, other than he wants to bring him into the hospital for 2-3 days for EEG while trying valium. Then I came home and started researching ESES, and felt like I got punched in the stomach.  Apparently there is a "constant and severe deterioration in neuropsychological functions associated with the disorder, and language capacity can be particularly affected. Patients also may show a profound decrease in intellectual level, poor memory, impaired temporospatial orientation, reduced attention span, hyperkinesis, aggressive behavior, and even psychosis".  I was having a hard enough time getting used to the idea that my son has epilepsy - now I'm worried about mental retardation and him losing his ability to talk.  Anybody else know anything about this, or have a child that has been diagnosed with this? Any information would be appreciated...

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Replies to This Discussion

Molly

I am so sorry you are going through this.  I don't know anything about ESES - but I found an old thread on the PHP forum.  Maybe there are others who can help you find answers -

 

http://epilepsyfoundation.ning.com/forum/topics/2217546:Topic:184065

 

Good luck and hang in there!  Sometimes things aren't as bad as you read on the internet -so try to remain hopeful.  Some of the parents in this thread seemed to have more positive outcomes than you described in your post.

Jennifer

thanks, Jennifer... I appreciate the link. I'm trying really hard to remain hopeful, but am so scared for him.  I have a call in to the neuro, so hopefully I can talk to him soon to see if he can address some of my worries

I can't help, but send you HUGS!

Missi

I am going to have to go research that.   Just remember most people online are the ones having difficulty. The ones that have postive outcomes and or easy control with seizures dont tend to be in the online community groups.

 

I would make an appt so you can sit down and discuss all the information without feeling rushed by your neuro.  Ask again and again till you are comfortable. 

 

Get another opinion if it is a type that needs to be treated very aggressive.

thanks Missi and Katie.  I've been reading mostly research articles, which is what has been scaring me. I was hoping to talk to some parents that had more positive outcomes, but I guess it's so rare that it might be tricky to find.

My son's neuro is so nice  - he called back last night and we talked quite a while. I don't feel too reassured, though - he pretty much said we should not get ahead of ourselves and we should wait to see how this 48hr EEG goes. Katie, I think you're right about getting another opinion... the doctor my son has been seeing is a resident. Although he works closely with an epileptologist, I think since this isn't a typical type of epilepsy we might want to see someone that has more experience...

Molly

 

I do know that if you are going to a hospital that is a teaching hospital or if you are seeing a resident it is within your rights to request to see a licensed practicing doctor rather than the student (residents are still students). If you would like to stay at the hospital you are at you can request an appointment with the epileptologist that is overseeing the case. A lot of places won't tell you this because it does free up the actual docs to see other patients, but it is in your rights and if you request it they have to get you an appointment. Only bad part is you may be waiting awhile to get the appointment....But doing the research is a good thing. Write down anything you find that you want to ask questions about. I do this often because I will get into the appointment with the epi and have a brain fart and forget what I wanted to talk about. So having it written down is an easy way to not forget when you are worried and stressed.

{{Hugs}} & prayers to you. Hope things work out!

I'm an oldie here, and yes, I do know a boy who had ESES.  They took him to Cleveland Clinic and Dr. Wylie got it under control and he's doing very well now.  He has some issues, he wasn't left unscathed, but he's doing really well.

 

Good luck.  I didn't read what protocal they are taking with your child, but I do know my friend's child had a pulse steroid treatment inpatient, then went home and tapered off and is still on depakote.

 

Blessings,

babs

Babs - thank you so much for responding!! That is exactly what I was hoping to hear - that there is a doctor that has successfully treated ESES, and that there is someone that has had it that is doing okay. I really appreciate the info. on the treatment he got. From what I've read, it seems steroids are the way to go with ESES. It seems valium can have positive results, though most often they are only temporary. I'm going to call the neuro tomorrow and ask why he is wanting to try valium first.

 

Again - thank you so much. I can't tell you how much I appreciate it!!!

Molly

Molly,

I completely feel for you. I am in the same situation, only about two months ahead of you. My 5 year old got diagnosed at the end of June with ESES, after a couple of seizures, a few EEGs and finally a long sleep study. My doctor didn't say much about it either, and I have also been looking things up online. It is scary and frustrating to not find much information out there. I have started to already see a decline in my son's learning. Right now, our neuro has us doing both a high dose Valium therapy every night at bedtime, as well as an IVIG treatment every two weeks. I waited all summer to find out if it worked. Last week I was told it did not work (yet). We are going to continue for another 6 weeks on this treatment. He is also on Depakote and Keppra, but due to awful behavior issues, we are tapering off of the Keppra. It is making me hopeful when I see how clear and wonderful he is for about a week after the IVIG treatment and then-bam, he is right back to ADHD tendencies, acting out, being mean and aggressive. I will say though, this behavior could also be due to the valium, keppra and depakote. It's a lot of medicine for a little body. I feel just awful about it all and I HATE just sitting idle and waiting to see if it works. I feel that time lost, could potentially be learning lost too. I just want my happy little boy back. Please let me know what you find out, so maybe we can compare notes. Good luck with everything.

Melanie - thank you so much for writing! This has been such a whirlwind for us, so it's really good to have someone to talk to who is going through the same thing.  We're in St. Louis and going to Children's Hospital - where are you?  I've begun to see regression in my son, as well, particularly with speech and behavior (aggression, impulsivity), memory, and getting lost easily in familiar places. I told my son's neuro I thought it might be the medication (he is taking zonegran, and just started the high dose valium therapy last week, too) but he said ESES progresses rapidly so it was probably due to that.  I don't know how you tell - it seems many of the side effects of medication are the same as the symptoms of ESES. Has your son started kindergarten? This has been really difficult timing because my son started two weeks after all of this began. He's been having lots of trouble since starting the valium - they call all the time saying he's wobbly, or irritable, or to come pick him up because he's falling asleep. I don't know how to handle it.  

 I've heard some good things about the IVIG treatment, and I think that's great that they started your son on it already. Our doctors seems to want to try one thing at a time - first the valium, then maybe add or switch to depakote, then we'll talk about IVIG or steroids. I've actually read about more successes with steroids than anything else. Although I know the side effects aren't trivial, if the valium doesn't work I don't want to wait before trying that. 

I don't know if you're aware of this group or not, but it's got a lot of info on ESES - http://health.groups.yahoo.com/group/RareEpilepsySyndromes

 

Are you on Facebook? If so, maybe we could message there...

 

Best of luck to you, too.

 

Melanie Walrath said:

Molly,

I completely feel for you. I am in the same situation, only about two months ahead of you. My 5 year old got diagnosed at the end of June with ESES, after a couple of seizures, a few EEGs and finally a long sleep study. My doctor didn't say much about it either, and I have also been looking things up online. It is scary and frustrating to not find much information out there. I have started to already see a decline in my son's learning. Right now, our neuro has us doing both a high dose Valium therapy every night at bedtime, as well as an IVIG treatment every two weeks. I waited all summer to find out if it worked. Last week I was told it did not work (yet). We are going to continue for another 6 weeks on this treatment. He is also on Depakote and Keppra, but due to awful behavior issues, we are tapering off of the Keppra. It is making me hopeful when I see how clear and wonderful he is for about a week after the IVIG treatment and then-bam, he is right back to ADHD tendencies, acting out, being mean and aggressive. I will say though, this behavior could also be due to the valium, keppra and depakote. It's a lot of medicine for a little body. I feel just awful about it all and I HATE just sitting idle and waiting to see if it works. I feel that time lost, could potentially be learning lost too. I just want my happy little boy back. Please let me know what you find out, so maybe we can compare notes. Good luck with everything.

Molly

We definitely need to chat about this, maybe offline? I will see if I can figure out how to message you privately. I am also on FB.

 

Crazy as it sounds...I am in Syracuse but heading to St. Louis in a couple of hours for business. How funny is that? My son is actually starting 1st grade. I haven't heard of issues YET, but he just started last week. I'm so nervous to send him to school and put him on the bus every day. I just wait nervously for a phone call that he's not acting right. It's awful to know that everything declines so rapidly. My doctor has told me nothing about the condition and the only time I've even seen him was in the hospital when he got diagnosed, during his sleep study. I'm afraid of what steroids would do to my son, but I'd rather fix this sooner than later. It's just awful. Hang in there.

Molly said:

Melanie - thank you so much for writing! This has been such a whirlwind for us, so it's really good to have someone to talk to who is going through the same thing.  We're in St. Louis and going to Children's Hospital - where are you?  I've begun to see regression in my son, as well, particularly with speech and behavior (aggression, impulsivity), memory, and getting lost easily in familiar places. I told my son's neuro I thought it might be the medication (he is taking zonegran, and just started the high dose valium therapy last week, too) but he said ESES progresses rapidly so it was probably due to that.  I don't know how you tell - it seems many of the side effects of medication are the same as the symptoms of ESES. Has your son started kindergarten? This has been really difficult timing because my son started two weeks after all of this began. He's been having lots of trouble since starting the valium - they call all the time saying he's wobbly, or irritable, or to come pick him up because he's falling asleep. I don't know how to handle it.  

 I've heard some good things about the IVIG treatment, and I think that's great that they started your son on it already. Our doctors seems to want to try one thing at a time - first the valium, then maybe add or switch to depakote, then we'll talk about IVIG or steroids. I've actually read about more successes with steroids than anything else. Although I know the side effects aren't trivial, if the valium doesn't work I don't want to wait before trying that. 

I don't know if you're aware of this group or not, but it's got a lot of info on ESES - http://health.groups.yahoo.com/group/RareEpilepsySyndromes

 

Are you on Facebook? If so, maybe we could message there...

 

Best of luck to you, too.

 

Melanie Walrath said:

Molly,

I completely feel for you. I am in the same situation, only about two months ahead of you. My 5 year old got diagnosed at the end of June with ESES, after a couple of seizures, a few EEGs and finally a long sleep study. My doctor didn't say much about it either, and I have also been looking things up online. It is scary and frustrating to not find much information out there. I have started to already see a decline in my son's learning. Right now, our neuro has us doing both a high dose Valium therapy every night at bedtime, as well as an IVIG treatment every two weeks. I waited all summer to find out if it worked. Last week I was told it did not work (yet). We are going to continue for another 6 weeks on this treatment. He is also on Depakote and Keppra, but due to awful behavior issues, we are tapering off of the Keppra. It is making me hopeful when I see how clear and wonderful he is for about a week after the IVIG treatment and then-bam, he is right back to ADHD tendencies, acting out, being mean and aggressive. I will say though, this behavior could also be due to the valium, keppra and depakote. It's a lot of medicine for a little body. I feel just awful about it all and I HATE just sitting idle and waiting to see if it works. I feel that time lost, could potentially be learning lost too. I just want my happy little boy back. Please let me know what you find out, so maybe we can compare notes. Good luck with everything.

Molly,

 

I live west of St. Louis in Washington, Missouri.  Small world.  We see a neuro at St. John's in St. Louis. 

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