Epilepsy Foundation

Anyone have exp. with CSWS? Can it manifest in aggitation/behavior problems? Help please.

Hello, never posted here before. Our daughter has a life long multiple seizure disorder and other severe disability issues as well including being severely intellectually disabled.

She has had unexplained mood swings with unexplained aggitation for quite some time. We finally got her in for an overnight video EEG and it showed that she has CSWS (Continuous Spike Waves during Slow Sleep) all night long, but not at all while awake. Her neuro put her on high Valium doses for 6 weeks, but the repeat overnight EEG 6 weeks later showed no improvement- still CSWS. So we're to continue the high doses of Valium for another 8 weeks and repeat again.

The neuro said that they didn't think she did not present with the "classic presentation" of CSWS because they couldn't really see an obvious change in language. However, her speech is very limited to begin with due to her disability, so I am confused about what exactly to look for when it comes to language changes. My main concern is her unexplained aggitation/mood swings- anyone else's kid have behavior issues as a result of CSWS. If so, can you please give me some examples of what types of behaviors?

If someone could please help me sort this out I would greatly appreciate it.

THANK YOU!!!!!

JL

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JL,

As far as I know CSWS kids do not always present obvious change in language. It is rather associated with LKS. My son has CSWS. He started to have language problems after having CSWS for more than one year. But he could still speak.

I consider behavior problems as hallmark of CSWS. My son's behavior was horrible with 100% csws in N-rem. He was uncontrollable. Behaved like a toddler, only toddlers would be much nicer:) We could not go anywhere. It was not possible to have a family dinner.

He is now on steroids and he is responding beatifully.

We also did valium treatment. However, we tried it for 4 weeks. It did not work. If it did not help for 6 weeks why are you going for 8 weeks more?

Below you'll find mail groups. I have found great support in these mail groups.

RareEpilepsySyndromes@yahoogroups.com

LandauKleffnerSyndrome@yahoogroups.com

My child was considered to be LKS variant. Your child may not be LKS but many LKS child suffer from ESES, so you will also find help there.

 

Fist, I don't know that language regression or change is specific to CSWS as it is in LKS/ESES.

I think w/ the syndrome of CSWS, it is more so associated with global regression and sometimes the global dev issues are already there ... pre-csws.

 

Anyway, behavioral issues can be a part of CSWS unfortuantely. And the benzo are not always helpful ... in fact soemtimes they may worsen behavior.

 

Behavioral issues I think vary. Is your child uncomfortable? Any sensory issues?

Has the neuro suggested steroids at all? Some have had better luck with this med.

Keto too. My daughter has had significant improvement in behavior & general function with a modified keto diet (LGIT)

 

Here is a link to a Yahoo group for parnts of children with rare epilepsy syndromes including CWSW.

http://health.groups.yahoo.com/group/RareEpilepsySyndromes/?yguid=4...

 

J

 

Thank you Kerem'smom, that was very helpful. How old is your son? My daughter is almost 21 and they/we wondering if she's been having CSWS for years now, but she's never had an overnight EEG until recently. We have always been referred to psychiatry for her mood swings/behaviors and she has yet to respond to bipolar meds, so we requested an EEG because we grew suspicous of sub-clinical seizures. That's when the CSWS was discovered. Your description of your son't behaviors sounds identical to our daughter's behaviors and we too have to restrict her social life during those times as well.

Can I ask you a couple more CSWS questions? Did the behaviors tend to come and go with your son? Or were they constant all the time with no breaks for a week or so at time. Our daughter's seem to come and go, but without any obvious schedule. Some weeks she is great, no aggitation/mood swing at all, then she just seems to start waking up overly tired and seemingly more wasted and in a horrible mood- lashing out at everyone like a toddler as you said, and right, only a toddler would be nicer- well said.

Thanks for the tip on the language seeming more common in LKS. She does not have LKS. And thanks for the links, I will check them out. We may have to go with a different treatment at the end of the next 8 weeks on Valium. I am glad your son is responding well to the steroids- great to hear. Any side effects on the steroids for him?

JL

kerem'smom said:

JL,

As far as I know CSWS kids do not always present obvious change in language. It is rather associated with LKS. My son has CSWS. He started to have language problems after having CSWS for more than one year. But he could still speak.

I consider behavior problems as hallmark of CSWS. My son's behavior was horrible with 100% csws in N-rem. He was uncontrollable. Behaved like a toddler, only toddlers would be much nicer:) We could not go anywhere. It was not possible to have a family dinner.

He is now on steroids and he is responding beatifully.

We also did valium treatment. However, we tried it for 4 weeks. It did not work. If it did not help for 6 weeks why are you going for 8 weeks more?

Below you'll find mail groups. I have found great support in these mail groups.

RareEpilepsySyndromes@yahoogroups.com

LandauKleffnerSyndrome@yahoogroups.com

My child was considered to be LKS variant. Your child may not be LKS but many LKS child suffer from ESES, so you will also find help there.

 

Thank you JJbeck, I am already feeling thankful to find parents like you on this site. I have wondered the very same thing you mentioned about "pre-CSWS" developmental issues. This isn't going to be easy, but support from parents like you are going to help me get through this. I am thinking we may have a long road ahead of us. I don't want to give up though. The benzo made her overly medicated and seemed to intensify the behaviors the first few weeks, but I think maybe she's tolerating better now. Her balance is better too. In addition, it is definitely helping her sleep better. I forgot to ask in any questions so far, does anyone's kid have sleep disturbance along with their CSWS or intween episodes?

Thanks so much again for your reply,

JL

jjbeck said:

Fist, I don't know that language regression or change is specific to CSWS as it is in LKS/ESES.

I think w/ the syndrome of CSWS, it is more so associated with global regression and sometimes the global dev issues are already there ... pre-csws.

 

Anyway, behavioral issues can be a part of CSWS unfortuantely. And the benzo are not always helpful ... in fact soemtimes they may worsen behavior.

 

Behavioral issues I think vary. Is your child uncomfortable? Any sensory issues?

Has the neuro suggested steroids at all? Some have had better luck with this med.

Keto too. My daughter has had significant improvement in behavior & general function with a modified keto diet (LGIT)

 

Here is a link to a Yahoo group for parnts of children with rare epilepsy syndromes including CWSW.

http://health.groups.yahoo.com/group/RareEpilepsySyndromes/?yguid=4...

 

J

 

Jeri,

My son is 10 years old. He was 7 when it started. His behavior was some days bad some days worse. Yes, there were some days when he was more controllable. He had huge regression with CSWS. He almost forgot writing. He could not add 2 by 2 although he loved maths before it started. He could not attend school for one year. I remember vividly that there came a day, he sat with his legos and started crying, saying that he did not know how to play with them anymore. You may be right in your suspicions that CSWS might be going on for a while. 

My son's behavior was incredibly bad with Valium. It was horrible.

Steroids have lots of side effects but the benefits outpass them.  

Your child cannot function properly while her brain is insulted continously in her sleep.

I tried to answer as much as I can. Please ask any question. I am ready to answer.

Alev

Jeri L said:

Thank you Kerem'smom, that was very helpful. How old is your son? My daughter is almost 21 and they/we wondering if she's been having CSWS for years now, but she's never had an overnight EEG until recently. We have always been referred to psychiatry for her mood swings/behaviors and she has yet to respond to bipolar meds, so we requested an EEG because we grew suspicous of sub-clinical seizures. That's when the CSWS was discovered. Your description of your son't behaviors sounds identical to our daughter's behaviors and we too have to restrict her social life during those times as well.

Can I ask you a couple more CSWS questions? Did the behaviors tend to come and go with your son? Or were they constant all the time with no breaks for a week or so at time. Our daughter's seem to come and go, but without any obvious schedule. Some weeks she is great, no aggitation/mood swing at all, then she just seems to start waking up overly tired and seemingly more wasted and in a horrible mood- lashing out at everyone like a toddler as you said, and right, only a toddler would be nicer- well said.

Thanks for the tip on the language seeming more common in LKS. She does not have LKS. And thanks for the links, I will check them out. We may have to go with a different treatment at the end of the next 8 weeks on Valium. I am glad your son is responding well to the steroids- great to hear. Any side effects on the steroids for him?

JL

I will reply more tomorrow, but recently read an article referring to adults w/ CSWS ... which is somewhat of a new idea I think as the thinking used to be CSWS & ESES is often outgrown during adolescence.

 

Anyway,

will be back tomorrow,

 

J

 

I definitely agree with jjbeck on the benzos. My son was diagnosed with CSWS at age four and now at 7.5 we have tried it all. Steroids, IVIG, valium, and all the AED's. No luck. My son stopped responding to high dose steroids before a wean! Anyhoo - benzos are the worst. I can really tell a difference in behavior after we've had to do rescue drugs in the few days afterwards. My son throws everything and can't sit still for anything. Clobazam seems to have the least side effects compared to valium and klonopin. He has only had ativan once in the hospital and that made him hyper too.

My son will have sleep issues when the CSWS gets really bad - 100%. He will just lie awake in bed and stare at the ceiling and maybe fall asleep around 3-4 in the morn.

I have seen serious behavior changes when ramping up to a cp during the day. Completely unbearable. Since there is a lot of fluctuation it is possible that although the EEG didn't catch daytime stuff - your daughter may be having it on the days she is agitated - just not every day.

My son still has language (albeit delayed) just global regression. His activity is all frontal lobe.

Charlene

I just read an article about KEPPRA being helpful for CSWS, but from what I've read it can also cause behavior issues. However, a parent recently told me that vitamin B-6 helps neurtalize the behavior side effects of KEPPRA in her child.

I'd be interested to read the article on CSWS in adults. Again, we think our daughter has been experiencing CSWS for years now, since she was about 10 or 12 and that it's only just now been caught on EEG seeing how she's never had an overnight EEG until just recently for the first time.

Also, her developmental delay is very severe. Mentally, she is about age 2 to 3 maybe. I hope that this won't be even more difficult to control considering there is a chance it might have been going on for so long now.


Jeri,

 

Keppra is one of the AEDs, neuros use for csws. It helps some children and it does not help some others. You never know. It did not help my son. It does not mean that it won't work for you. We tried Depakote, Keppra, Clonepazam, Clobazam, Ethosuximide, Oxcarmazepine, Valium, ACTH in different combinations.

Only Pred. worked for him in combination with Depakote and Clobazam.

I don't know an article about an adult with CSWS. I am rather disappointed to hear that you child is an adult cause we were kinda hoping that it would go away in adolescense :(

ESES generally goes away in adolescense and I suppose it must be very rare for adults. I will look for articles though. If I find any, I'll write to you.

We are also using B6 time to time. Neuro says there is nothing confirmed that it helps alleviating agitation but she does not say no either. So we use it.

a.


Jeri L said:

I just read an article about KEPPRA being helpful for CSWS, but from what I've read it can also cause behavior issues. However, a parent recently told me that vitamin B-6 helps neurtalize the behavior side effects of KEPPRA in her child.

I'd be interested to read the article on CSWS in adults. Again, we think our daughter has been experiencing CSWS for years now, since she was about 10 or 12 and that it's only just now been caught on EEG seeing how she's never had an overnight EEG until just recently for the first time.

Also, her developmental delay is very severe. Mentally, she is about age 2 to 3 maybe. I hope that this won't be even more difficult to control considering there is a chance it might have been going on for so long now.

kerem'smom, my daughter was only just now diagnosed with it and she is cofusing to the doctors as well because as I mentioned earlier, she does not appear to them to have the "classic presentation" clinically of it, so with that in mind in addition to the fact that she is extremely complicated in general. She is severely affected by so many other issues. I hope that will help you not worry when it comes to the adult age and CSWS. I am simply having a difficult time finding ANYONE like my daughter in regards to all of her issues. She has a genetic metabolic disorder btw. I wouldn't lose faith in your son outgrowing CSWS if his doctors look forward to that and it also gives me hope that maybe my daughter will too. She did outgrow the worst of her tonic-clonic seizures. Thanks for sharing.

Ok, below is the link to the article I mentioned. If it does not work, you can google it. The title is Continuous spikes and waves during slow sleep in an adult.

The very 1st sentence says that  CSWS is rare and age related. I have been reading about CSWS for several years now and know of many chidlren and I suspect adults who have this.

I think they will find it is actually not so rare ... esp in those with brain injuries. I also think they will find that while does often times subside during adolecence that it may continue or even begin during adulthood.

 

Now you mention bipolar & metabolic disorder. Was your child actually DXd with bipolar? One thing I like to mention when I hear bipoalar is that they think it could be related to a  mitocondrial disorder. So can many other conditions and disabilties incliding seizures and dev disabilities.

Has anyone looked into this yet?

 

I mention it as the treatment for this is often a prescription supplement and believe it or not the supp can help tremendously with mood, function and even seizures including CSWS.

 

Also, I will mention diet again since it is becoming more popular with adults having epilepsy. Keto, MAD and LGIT are sometimes used in those with CSWS and many not only get seizure control, but tremendous improvement in behavior.

 

RE: Keppra, It is one of the best meds out there. Technically it is a spike suppressor and I know it has been tried for CSWS, but I have not ever heard of ti working for CSWS. Still, though it may be worht a try.

Yes in some (I believe  have heard around 20%) it can increase behavioral issues, but in some it can improve issues.

 

Anyway, here is that link and incidentally the person ref in the article is also 21 and mentions the pt having outbursts of anger.

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WDT-...

FWIW, we have had some success treating our preteen's CSWS with Keppra.  It greatly improves her sleep EEG, as well as substantially improving her cognition.  Unfortunately, it only works for a couple of months at a time.  It gradually stops working, and then we wean her off and wait a few months before we try again.  We've been through that cycle at least 3 times so far.  It and valium are the only meds that have worked for her CSWS so far.  We're trying clobazam now, with uncertain results.  Meds that haven't worked include trileptal, lamictal, phenobarbital, and depakote.

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