Epilepsy Foundation

Early-onset benign childhood occipital epilepsy ( Panayotopoulos type)

Is there any parent whose child is diagnosed with early-onset BOCE?

 

My 5.5 year old son was diagnosed this summer with it after having a nocturnal seizure. We started sodium valproate in July. He has not had a seizure since then but his sleep EEG shows 45-50% CSWS. We added 5 mg Frisium this month. He'll have another EEG in April. He is complaining that he is dizzy and I don't know whether its E. or side effects of Frisium. My older son has been on Frisium for more than one and a half years and he has never complained of dizziness.

I also wonder whether you child with BOCE has CSWS in his sleep and if yes what is the percentage and moreover, if your child has responded to any medication, what is it?

Thank you.

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Does your child actually have CSWS or ESES?

These two terms used to be used interchangeably, but recently some use the term ESES as the eeg pattern which used to have a criteria of a S&W index of 85% or greater, though in recent years some use a criteria of 50% or greater.

The term CSWS now often means a syndrome where regression occurs and often there are multiple seizure types.

 

At one point my child had a near continuous pattern. We found a modeified keto diet to help her.

Helped with both seizures and with some of that spiking. She still has some spiking, but it has improved a great deal. Her symptoms would usually include the symptoms described in Panayiotpoulos Syndrome.

 

J

 

 

J,


My son has 45-50% CSWS in his sleep. He has not regressed (yet). Therefore, our neuro sticks to her partial epilepsy diagnosis. She says that in BOCE activity also occurs in sleep and this does not show that he has ESES.

That's why I am asking whether other BOCE kids also have this much activity in their sleep EEGs.

Considering that his older brother was first diagnosed with BRE with 50% CSWS in his sleep three years ago and then turned into ESES six months later we don't know what the future holds for us :) We have been fighting with ESES since then and he finally responded to steroids.

 

 


jjbeck said:

Does your child actually have CSWS or ESES?

These two terms used to be used interchangeably, but recently some use the term ESES as the eeg pattern which used to have a criteria of a S&W index of 85% or greater, though in recent years some use a criteria of 50% or greater.

The term CSWS now often means a syndrome where regression occurs and often there are multiple seizure types.

 

At one point my child had a near continuous pattern. We found a modeified keto diet to help her.

Helped with both seizures and with some of that spiking. She still has some spiking, but it has improved a great deal. Her symptoms would usually include the symptoms described in Panayiotpoulos Syndrome.

 

J

 

 

MY dr has mentioned all of these things to us too...and last EEG we did it was UP TO 80%  active during sleep but it was ruled out...However, ESES was not the Dx for sure..and ours are occipital started (CPS) left more than right but some of the spikes/slow at times migrated to the front part of brain..This was new for us (the increased night time stuff) recently and keppra was not doing its job so we are on /getting on lamictal now...

 

I wish I had seen the statement 'in recent years' > 50%..'..I would have harrassed/persisted on that..

We have zero regression and she does really well actually....

 

But still I feel 'confused' as well suddenly with these changes/terms (Panatoloylous, Occiptal, etc)... and I am into this 3 years.....

 

But in summary...yes our last EEG has quite a bit of nighttime action..We hardly hae seizures but I thought the keppra awas too high..her behavior was off...turns out she had this nighttime stuff going on...We still have the CPS but pana. and Occiptal was thrown around...last appt.

Vanessa,

How old is your daughter?

Have I understood correctly: your daughter was diagnosed with Pana. and treated with Keppra but you found out that she has 80% activity in sleep but she does not have ESES because she does not have regression, right?

What about her EEG before the 80% activity one? How was the activity?

My son also mostly has left side activity on the occipital lobe.

 Does you daughter complain of being dizzy?

Vanessa said:

MY dr has mentioned all of these things to us too...and last EEG we did it was UP TO 80%  active during sleep but it was ruled out...However, ESES was not the Dx for sure..and ours are occipital started (CPS) left more than right but some of the spikes/slow at times migrated to the front part of brain..This was new for us (the increased night time stuff) recently and keppra was not doing its job so we are on /getting on lamictal now...

 

I wish I had seen the statement 'in recent years' > 50%..'..I would have harrassed/persisted on that..

We have zero regression and she does really well actually....

 

But still I feel 'confused' as well suddenly with these changes/terms (Panatoloylous, Occiptal, etc)... and I am into this 3 years.....

 

But in summary...yes our last EEG has quite a bit of nighttime action..We hardly hae seizures but I thought the keppra awas too high..her behavior was off...turns out she had this nighttime stuff going on...We still have the CPS but pana. and Occiptal was thrown around...last appt.

Our now 6 year old son was diagnosed this past summer when he was 5.5.  We have also had a lot of the same terms thrown at us. His first diagnosis was benign childhood epilepsy, then after the VEEG they added the Panayotopoulos type.  He has nocturnal Complex Partials originating in the left occipital lobe and moving to the center. The VEEG also showed continuous activity while asleep, even while on the Trilepital.  We have just weaned off the Trilepital and started Lamitical, and we are very pleased so far.  Our son has occasionally complained of being dizzy, while we were raising Lamitical levels he complained more of dizziness, but now it he only mentions it once in awhile.

Hi..

 

Well, she is 6 and was originally DX as Complex Partial Seizure originating in the Left Occiptal, but the abnormality is also in slightly in the right..

 

She had only a couple breakthroughs on Keppra but the last EEG showed a different from SLIGHTLY ABNORMAL to Abnormal (more active) triggeed by sleep. That is when the DR sort of said that Pana. seems to be the broader name for the type of seizures she has. I think it has to do with how Europe for example terms these seiuzres....So when I point asked him if that is what she has he sort of said it is the broader term (almost like a wait and see) that it could be Benign Occipital (even though our EEG changed)...We are still classified as CPS...for sure..She is not having 80% of the time activity but RATHER up to 80% of the reading at various stages...The way he described it was that other times it could be fine...So that is the reason for the NON ESES DX.....

 

She does not complain about being dizzy for now...she is on keppra and titrating lamictal...(our other choice was depakote to calm thie nighttime activity)...I have another in in April..

 

I just read jennifer's and our sort of went like that too....Except our 'term' was Complex Partial...still is..but now we have some new ones thrown in..lol..

 

Sorry I am not good to explain that 80%..I will ask my husband how it was explained...he can term in better..

kerem'smom said:

Vanessa,

How old is your daughter?

Have I understood correctly: your daughter was diagnosed with Pana. and treated with Keppra but you found out that she has 80% activity in sleep but she does not have ESES because she does not have regression, right?

What about her EEG before the 80% activity one? How was the activity?

My son also mostly has left side activity on the occipital lobe.

 Does you daughter complain of being dizzy?

Vanessa said:

MY dr has mentioned all of these things to us too...and last EEG we did it was UP TO 80%  active during sleep but it was ruled out...However, ESES was not the Dx for sure..and ours are occipital started (CPS) left more than right but some of the spikes/slow at times migrated to the front part of brain..This was new for us (the increased night time stuff) recently and keppra was not doing its job so we are on /getting on lamictal now...

 

I wish I had seen the statement 'in recent years' > 50%..'..I would have harrassed/persisted on that..

We have zero regression and she does really well actually....

 

But still I feel 'confused' as well suddenly with these changes/terms (Panatoloylous, Occiptal, etc)... and I am into this 3 years.....

 

But in summary...yes our last EEG has quite a bit of nighttime action..We hardly hae seizures but I thought the keppra awas too high..her behavior was off...turns out she had this nighttime stuff going on...We still have the CPS but pana. and Occiptal was thrown around...last appt.

It seems that it has been quite a summer for both our families :) My son had his seizure on 22-23 June and started pills in the first week of July .


JenniferW. said:

Our now 6 year old son was diagnosed this past summer when he was 5.5.  We have also had a lot of the same terms thrown at us. His first diagnosis was benign childhood epilepsy, then after the VEEG they added the Panayotopoulos type.  He has nocturnal Complex Partials originating in the left occipital lobe and moving to the center. The VEEG also showed continuous activity while asleep, even while on the Trilepital.  We have just weaned off the Trilepital and started Lamitical, and we are very pleased so far.  Our son has occasionally complained of being dizzy, while we were raising Lamitical levels he complained more of dizziness, but now it he only mentions it once in awhile.

Actually, one of the terms our neuro uses is idiopathic complex partial epilepsy. I think because of the ictal tonic eye and vomiting he fits the pana. type
What I found out in the last three years is that there's a lot of wait and see with e. :) hope that time will bring only good news for all of us.

 


Vanessa said:

Hi..

 

Well, she is 6 and was originally DX as Complex Partial Seizure originating in the Left Occiptal, but the abnormality is also in slightly in the right..

 

She had only a couple breakthroughs on Keppra but the last EEG showed a different from SLIGHTLY ABNORMAL to Abnormal (more active) triggeed by sleep. That is when the DR sort of said that Pana. seems to be the broader name for the type of seizures she has. I think it has to do with how Europe for example terms these seiuzres....So when I point asked him if that is what she has he sort of said it is the broader term (almost like a wait and see) that it could be Benign Occipital (even though our EEG changed)...We are still classified as CPS...for sure..She is not having 80% of the time activity but RATHER up to 80% of the reading at various stages...The way he described it was that other times it could be fine...So that is the reason for the NON ESES DX.....

 

She does not complain about being dizzy for now...she is on keppra and titrating lamictal...(our other choice was depakote to calm thie nighttime activity)...I have another in in April..

 

I just read jennifer's and our sort of went like that too....Except our 'term' was Complex Partial...still is..but now we have some new ones thrown in..lol..

 

Sorry I am not good to explain that 80%..I will ask my husband how it was explained...he can term in better..

kerem'smom said:

Vanessa,

How old is your daughter?

Have I understood correctly: your daughter was diagnosed with Pana. and treated with Keppra but you found out that she has 80% activity in sleep but she does not have ESES because she does not have regression, right?

What about her EEG before the 80% activity one? How was the activity?

My son also mostly has left side activity on the occipital lobe.

 Does you daughter complain of being dizzy?

Vanessa said:

MY dr has mentioned all of these things to us too...and last EEG we did it was UP TO 80%  active during sleep but it was ruled out...However, ESES was not the Dx for sure..and ours are occipital started (CPS) left more than right but some of the spikes/slow at times migrated to the front part of brain..This was new for us (the increased night time stuff) recently and keppra was not doing its job so we are on /getting on lamictal now...

 

I wish I had seen the statement 'in recent years' > 50%..'..I would have harrassed/persisted on that..

We have zero regression and she does really well actually....

 

But still I feel 'confused' as well suddenly with these changes/terms (Panatoloylous, Occiptal, etc)... and I am into this 3 years.....

 

But in summary...yes our last EEG has quite a bit of nighttime action..We hardly hae seizures but I thought the keppra awas too high..her behavior was off...turns out she had this nighttime stuff going on...We still have the CPS but pana. and Occiptal was thrown around...last appt.

Sadly....we are also at the 3 year mark....as well..Jan 20 to be exact..

 

We were on keppra from Oct 2008 to dec 2010 with only 2 breaks..both while travelling...In Oct we did another EEG, MRI, Metabolic, blood, genetic, all kinds of tests again...and after a suspicouls incident in Dec he decided to change....so it takes a long time for Lamictal pills as you know and then at week #12 I can start to reduce keppra. So far  I like what I see with this regimen. I feel I have my kids that I used to have..

Yes it is wait and see and just this week I realized that you can have a med honeymoon as long as 2 years!  Crazy. I was calling that success..but not sure now!..Thank God for the board...

 

And yes I have also heard the idiopathic as well..lol..I stopped getting technical on the terms but made sure he answered me 'why' he says not to ESES...

 

BTW..We would have not known anything like this..except her behavior was a bit more moodly and miserable than normal..

 

And she does throw up with her seizures..although she had a flu a couple weeks ago and this seiuzure was super scary b/c I was watching the monitor and noticed she was just blinking normally in the dark...I had put her to bed about 1 hour or so before...I checked her and of course seiuzre (not home, non aware, slight eye deviation...could not answer)...

But no vomitting...this time..unless I caught it soon enough..

 

Does yours sleep with you?  Our does b/c I cannot tell if she is seizing b/c she makes hardly any noise or shake...

 

 


kerem'smom said:

Actually, one of the terms our neuro uses is idiopathic complex partial epilepsy. I think because of the ictal tonic eye and vomiting he fits the pana. type
What I found out in the last three years is that there's a lot of wait and see with e. :) hope that time will bring only good news for all of us.

 


Vanessa said:

Hi..

 

Well, she is 6 and was originally DX as Complex Partial Seizure originating in the Left Occiptal, but the abnormality is also in slightly in the right..

 

She had only a couple breakthroughs on Keppra but the last EEG showed a different from SLIGHTLY ABNORMAL to Abnormal (more active) triggeed by sleep. That is when the DR sort of said that Pana. seems to be the broader name for the type of seizures she has. I think it has to do with how Europe for example terms these seiuzres....So when I point asked him if that is what she has he sort of said it is the broader term (almost like a wait and see) that it could be Benign Occipital (even though our EEG changed)...We are still classified as CPS...for sure..She is not having 80% of the time activity but RATHER up to 80% of the reading at various stages...The way he described it was that other times it could be fine...So that is the reason for the NON ESES DX.....

 

She does not complain about being dizzy for now...she is on keppra and titrating lamictal...(our other choice was depakote to calm thie nighttime activity)...I have another in in April..

 

I just read jennifer's and our sort of went like that too....Except our 'term' was Complex Partial...still is..but now we have some new ones thrown in..lol..

 

Sorry I am not good to explain that 80%..I will ask my husband how it was explained...he can term in better..

kerem'smom said:

Vanessa,

How old is your daughter?

Have I understood correctly: your daughter was diagnosed with Pana. and treated with Keppra but you found out that she has 80% activity in sleep but she does not have ESES because she does not have regression, right?

What about her EEG before the 80% activity one? How was the activity?

My son also mostly has left side activity on the occipital lobe.

 Does you daughter complain of being dizzy?

Vanessa said:

MY dr has mentioned all of these things to us too...and last EEG we did it was UP TO 80%  active during sleep but it was ruled out...However, ESES was not the Dx for sure..and ours are occipital started (CPS) left more than right but some of the spikes/slow at times migrated to the front part of brain..This was new for us (the increased night time stuff) recently and keppra was not doing its job so we are on /getting on lamictal now...

 

I wish I had seen the statement 'in recent years' > 50%..'..I would have harrassed/persisted on that..

We have zero regression and she does really well actually....

 

But still I feel 'confused' as well suddenly with these changes/terms (Panatoloylous, Occiptal, etc)... and I am into this 3 years.....

 

But in summary...yes our last EEG has quite a bit of nighttime action..We hardly hae seizures but I thought the keppra awas too high..her behavior was off...turns out she had this nighttime stuff going on...We still have the CPS but pana. and Occiptal was thrown around...last appt.

Our son sleeps with us as well.  He vomits sometimes and is very quite.  We moved his mattress right next ours, although he still crawls in with us usually.  We also have a camera for when we are not in there with him.

 

I got way to confused with all the technical names being thrown at us. So I am just focusing on hoping Lamitical helps him for however long we get. It has brought our happy, decently behaved child back.

Vanessa said:

Sadly....we are also at the 3 year mark....as well..Jan 20 to be exact..

 

We were on keppra from Oct 2008 to dec 2010 with only 2 breaks..both while travelling...In Oct we did another EEG, MRI, Metabolic, blood, genetic, all kinds of tests again...and after a suspicouls incident in Dec he decided to change....so it takes a long time for Lamictal pills as you know and then at week #12 I can start to reduce keppra. So far  I like what I see with this regimen. I feel I have my kids that I used to have..

Yes it is wait and see and just this week I realized that you can have a med honeymoon as long as 2 years!  Crazy. I was calling that success..but not sure now!..Thank God for the board...

 

And yes I have also heard the idiopathic as well..lol..I stopped getting technical on the terms but made sure he answered me 'why' he says not to ESES...

 

BTW..We would have not known anything like this..except her behavior was a bit more moodly and miserable than normal..

 

And she does throw up with her seizures..although she had a flu a couple weeks ago and this seiuzure was super scary b/c I was watching the monitor and noticed she was just blinking normally in the dark...I had put her to bed about 1 hour or so before...I checked her and of course seiuzre (not home, non aware, slight eye deviation...could not answer)...

But no vomitting...this time..unless I caught it soon enough..

 

Does yours sleep with you?  Our does b/c I cannot tell if she is seizing b/c she makes hardly any noise or shake...

 

 


kerem'smom said:

Actually, one of the terms our neuro uses is idiopathic complex partial epilepsy. I think because of the ictal tonic eye and vomiting he fits the pana. type
What I found out in the last three years is that there's a lot of wait and see with e. :) hope that time will bring only good news for all of us.

 


Vanessa said:

Hi..

 

Well, she is 6 and was originally DX as Complex Partial Seizure originating in the Left Occiptal, but the abnormality is also in slightly in the right..

 

She had only a couple breakthroughs on Keppra but the last EEG showed a different from SLIGHTLY ABNORMAL to Abnormal (more active) triggeed by sleep. That is when the DR sort of said that Pana. seems to be the broader name for the type of seizures she has. I think it has to do with how Europe for example terms these seiuzres....So when I point asked him if that is what she has he sort of said it is the broader term (almost like a wait and see) that it could be Benign Occipital (even though our EEG changed)...We are still classified as CPS...for sure..She is not having 80% of the time activity but RATHER up to 80% of the reading at various stages...The way he described it was that other times it could be fine...So that is the reason for the NON ESES DX.....

 

She does not complain about being dizzy for now...she is on keppra and titrating lamictal...(our other choice was depakote to calm thie nighttime activity)...I have another in in April..

 

I just read jennifer's and our sort of went like that too....Except our 'term' was Complex Partial...still is..but now we have some new ones thrown in..lol..

 

Sorry I am not good to explain that 80%..I will ask my husband how it was explained...he can term in better..

kerem'smom said:

Vanessa,

How old is your daughter?

Have I understood correctly: your daughter was diagnosed with Pana. and treated with Keppra but you found out that she has 80% activity in sleep but she does not have ESES because she does not have regression, right?

What about her EEG before the 80% activity one? How was the activity?

My son also mostly has left side activity on the occipital lobe.

 Does you daughter complain of being dizzy?

Vanessa said:

MY dr has mentioned all of these things to us too...and last EEG we did it was UP TO 80%  active during sleep but it was ruled out...However, ESES was not the Dx for sure..and ours are occipital started (CPS) left more than right but some of the spikes/slow at times migrated to the front part of brain..This was new for us (the increased night time stuff) recently and keppra was not doing its job so we are on /getting on lamictal now...

 

I wish I had seen the statement 'in recent years' > 50%..'..I would have harrassed/persisted on that..

We have zero regression and she does really well actually....

 

But still I feel 'confused' as well suddenly with these changes/terms (Panatoloylous, Occiptal, etc)... and I am into this 3 years.....

 

But in summary...yes our last EEG has quite a bit of nighttime action..We hardly hae seizures but I thought the keppra awas too high..her behavior was off...turns out she had this nighttime stuff going on...We still have the CPS but pana. and Occiptal was thrown around...last appt.

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