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Question about DD absence epilepsy..
Thu, 04/07/2005 - 09:53I have posted a few times in regards to my 4 yr old sons tonic clonic seizures as of late (we are still waiting for our neuro appt on the 28th but on Tegretol)....in those posts i mentioned that my 10 yr old dd also has epilepsy/absence epilepsy. She was dx in 2001 and was on Zarontin for 3 yrs when she had a EEG to see if we could start to wean her off bc we thought she had been seizure free for 2 yrs. Well on the EEG she still continued to have seizure activity so at xmas we switched her to Epival 375mgs 2 times per day....we just did a f/u EEG to check to make sure all was well before we started on the 2 yr countdown again and again I saw (the tech confirmed what i saw but obviously I haven't heard from the Dr) activity particularly during hyperventilation but there were other incidents.....so what does that mean? Does that mean that the dose isn't high enough, the med isn't working? Could it be as simple as upping the dose? I am really not sure what to make of this bc like last EEG I just assumed the EEG would be clear/normal??? I would love to hear your thoughts and appreciated greatly....Thanks!!
Karen
proud mom to Kiana 10 (absence epilepsy on Epival), identical twins Nicholas and Alexander 9 and Ethan 4 (whole slew of complicated GI issues and currently unexplained and undiagnosed generalized seizures...on Tegretol)
Comments
RE: RE: Question about DD absence epilepsy..
Submitted by kaaye on Tue, 2005-04-05 - 21:23
Before Kiana was dx in 2001 her teacher first came to me saying that she was having trouble with Kiana's attention, daydreaming, forgetting what she was doing...she said i had to get her assessed for ADD. I went to her ped and basically said NO WAY, the ped suggested I watch her...it was then that I really began to notice the "pauses" and they became more and more frequent and disruptive....she would stop, eyelids flutter, eyeballs roll upwards, sometimes a tongue click or a hand flutter...her EEG more than confirmed many many many absence seizure episodes...in hyperventilation and not. She was put on the Zarontin and there was an almost immediate response for the better but it took a year and an episode of a very high fever before she seemed to have "none". I really really did not think she was having any and no one ever complained to me that she was...there were few occassions that Kiana said that she might of had one but the neuro decided to just "let it be" unless they became very obvious bc we couldn't be sure. The EEG just before xmas was to see that she was indead clear and start the wean off the med. It wasn't...it was a better better and they were not as "physically" obvious (in hyperventilation only)..the neuro was very surprised as was I...I so did not expect it. So the neuro switched her to Epival and followed up with this EEG to be sure all was "well" and then we would start the 2 yr countdown again...I assumed the EEG would be normal..it wasn't and there seemed to be a few episodes outside the hyperventilation...again I was so surprised. The tech basically confirmed what i saw although i have to wait for the official report...I am sure the neuro will be very surprised, we never really talked about what would happen if this EEG did not come back good. The Epival really helped with her moods, I wasn't sure if it was the age she was coming into or the Zarontin but beofre the switch the mood swings could be sudden and vicious...the Epival smooothed them nicely. Other than that I have noticed nothing...i almost feel guilty and bad. I am a little concerned that they seem difficult to get under control and a little confused but i guess those are answers to get from the neuro appt in May (although I do hope to get the results before then-I hate waiting).
Well i guess that is our history...thanks for sharing yours...I wish you luck in the care of your DD and hope that you will find something to get some control in her life. Thanks again...
Karen
Before Kiana was dx in 2001 her teacher first came to me saying that she was having trouble with Kiana's attention, daydreaming, forgetting what she was doing...she said i had to get her assessed for ADD. I went to her ped and basically said NO WAY, the ped suggested I watch her...it was then that I really began to notice the "pauses" and they became more and more frequent and disruptive....she would stop, eyelids flutter, eyeballs roll upwards, sometimes a tongue click or a hand flutter...her EEG more than confirmed many many many absence seizure episodes...in hyperventilation and not. She was put on the Zarontin and there was an almost immediate response for the better but it took a year and an episode of a very high fever before she seemed to have "none". I really really did not think she was having any and no one ever complained to me that she was...there were few occassions that Kiana said that she might of had one but the neuro decided to just "let it be" unless they became very obvious bc we couldn't be sure. The EEG just before xmas was to see that she was indead clear and start the wean off the med. It wasn't...it was a better better and they were not as "physically" obvious (in hyperventilation only)..the neuro was very surprised as was I...I so did not expect it. So the neuro switched her to Epival and followed up with this EEG to be sure all was "well" and then we would start the 2 yr countdown again...I assumed the EEG would be normal..it wasn't and there seemed to be a few episodes outside the hyperventilation...again I was so surprised. The tech basically confirmed what i saw although i have to wait for the official report...I am sure the neuro will be very surprised, we never really talked about what would happen if this EEG did not come back good. The Epival really helped with her moods, I wasn't sure if it was the age she was coming into or the Zarontin but beofre the switch the mood swings could be sudden and vicious...the Epival smooothed them nicely. Other than that I have noticed nothing...i almost feel guilty and bad. I am a little concerned that they seem difficult to get under control and a little confused but i guess those are answers to get from the neuro appt in May (although I do hope to get the results before then-I hate waiting).
Well i guess that is our history...thanks for sharing yours...I wish you luck in the care of your DD and hope that you will find something to get some control in her life. Thanks again...
Karen
RE: Question about DD absence epilepsy..
Submitted by questions on Wed, 2005-04-06 - 11:58
I have just read your post and following reply. I really see our situation there also, especially the comment about the meds causing shyness.
My 14 yr old has absence sz, we have just been through alot with med adjustments and I have now realized that she was having several undetected sz - only realizing in hindsight after video eeg in the fall. She has done a few med swaps in the past few months - we're adding zonegran to topamax. Much improvement on the zonegran. I also am suspicous that the topamax was increasing the blinks and I thought I was learning to detect them. So I know what you mean when you say you feel guilty. I wish this was a more exact science. My daughter is totally tired of my constant close observation but I feel that WE are the only eyes the dr has except for the few minutes we're together, so I'd better be sure of what I tell her.
I have just read your post and following reply. I really see our situation there also, especially the comment about the meds causing shyness.
My 14 yr old has absence sz, we have just been through alot with med adjustments and I have now realized that she was having several undetected sz - only realizing in hindsight after video eeg in the fall. She has done a few med swaps in the past few months - we're adding zonegran to topamax. Much improvement on the zonegran. I also am suspicous that the topamax was increasing the blinks and I thought I was learning to detect them. So I know what you mean when you say you feel guilty. I wish this was a more exact science. My daughter is totally tired of my constant close observation but I feel that WE are the only eyes the dr has except for the few minutes we're together, so I'd better be sure of what I tell her.
RE: Question about DD absence epilepsy..
Submitted by steph102171 on Tue, 2005-04-05 - 18:24
Karen,
I have a daughter who is now 8 yrs old, she also has absence seizures. She too was diagnosed in 2001. She started on Depakote then Zarontin w/Depakote, then Zanegran by itself now they have her taking (Zonegran 125mg 2xday and Lamictal 200mg 1x 225 1x day),so I don't know how high the dosage has to be to be controlled, because we have yet to see "controlled" as a matter of fact they are alot worse than they were when she was first diagnosed at the age of 4 yr.
She has not had a grand mal seizure (Thank God ) only the absence seizures (eyes flutter and loss of concentration).
I do know that they always get Brooke to hyperventalate to be able to confirm what I see when they happen at home. I hope for your sake and Kianas that it's as simple as just uping the dose of medication.
Did you not notice any of the absence seizures during the 2 years that you thought they were all gone? What are some of her symptoms? Does she perform well in school? Do you notice that her meds make her seem shy or not very expressive ? This is the way my daughter seems so I would like to know if you see this in Kiana.
Karen,
I have a daughter who is now 8 yrs old, she also has absence seizures. She too was diagnosed in 2001. She started on Depakote then Zarontin w/Depakote, then Zanegran by itself now they have her taking (Zonegran 125mg 2xday and Lamictal 200mg 1x 225 1x day),so I don't know how high the dosage has to be to be controlled, because we have yet to see "controlled" as a matter of fact they are alot worse than they were when she was first diagnosed at the age of 4 yr.
She has not had a grand mal seizure (Thank God ) only the absence seizures (eyes flutter and loss of concentration).
I do know that they always get Brooke to hyperventalate to be able to confirm what I see when they happen at home. I hope for your sake and Kianas that it's as simple as just uping the dose of medication.
Did you not notice any of the absence seizures during the 2 years that you thought they were all gone? What are some of her symptoms? Does she perform well in school? Do you notice that her meds make her seem shy or not very expressive ? This is the way my daughter seems so I would like to know if you see this in Kiana.