Behavior and Epilepsy

[Dee]

Thank you for your response to my previous questions.  I'm in a quandry and feel like throwing my hands up in the air over the medical care of my son.  Briefly, he's 6 and diagnosed with complex partial seizures predominately in the right occipital area.  When the symptoms of the seizures began in April, also did tics - mostly motor, occasionally vocal.  They have waxed and waned since then, but his neurologist says he has Tourettes as well.  He initially started with sudden jerking of the head and limbs.  Over time we've seen a personality change, but with each trial of medication, Tegretol, Depakote and now Dilantin, new things enter the picture such as the incontinence and volatile rages.  Each time medication is withdrawn these symptoms, espcially the incontinence, either disappear or lessen in frequency.  A conversation with his neuro. this week and the effects of these medications left me baffled.  She feels like anything other than his seizures are a behavioral issue and he should seek counseling.  She has never heard of any of the side effects he's experienced, especially having been on three different ones.  Granted, Dilantin seems to have had the least side effects, but he's not up to full doseage yet, but the loss of bladder control resumed when Dilantin was started.  However, his rages are NOTHING compared to what they were on the Depakote.  My thoughts are that with the pattern of behavior he experienced while on these drugs it's almost like being stuck in a cycle - he gets angry, but can't handle it and is out of control.  That is how he reacted every time.  Without medication, he get's angry, but instead of kicking and screaming in a matter of seconds he raises his voice and says he's angry.  He has to learn how to react all over again each time, but is more compliant off medication.  With medication there is no dealing with him during a rage.  So while some of this may be behavioral, it's only because that was the cycle he was stuck in on medication.  This is what he learned.  One night as he went to bed (while on Depakote) he started thrashing in his bed and cried that he couldn't stop moving.  I picked him up and just held him and rocked him while he cried and cried and said, "I don't know what's wrong with me."  I knew what it was - the Depakote.  But now his neuro. says anything he does that's not a seizure is behavioral.  What do I do now?  I'm at a total loss here.

[melanie101]

A related discussion, depakote was started.

[Dee]

Thank you for your comments.  I posted a Depakote question and it is now in the archives as "Depakote causes anger?".  I've been to many other sites and read many, many postings from other parents of children with all kinds of seizures, mostly complex partial, but you would be surprised at the behavior changes - mostly rage - brought about by Depakote.  There were a few good responses to this medication and we all know everybody is different, but it was reassuring to know that I wasn't overreacting when I thought my son became worse after Depakote - almost immediately for him.  When I weaned him off of it, it took a while for him to return to his baseline state, but I did get my little boy back.  He had a withdrawal seizure during the process, but I'd still do it again.  Depakote is used to treat bi-polar disorder as well, but seems to have the opposite effect in a lot of patients - at least the ones that post on the Internet!  Hope this helps.  (Go to eGroups Epilepsy and read some of the previous postings.)

[Diane D [email protected]]

I have a 13 year old boy who has been on Depekote/depekane for 11 years.  His anger has been increasing regularily.  I recognize the cycle you discribed.  He flares for no apparent reason.  I would be interested if you have done more research into this.

[Carol]

I came upon your question while browsing. It is interesting to me since a friend of mine is experiencing a very similar problem with her child. So similar that I wondered if this was her question. Her 8 yr old child's seizures began several years ago-also partial complex. She has had the same response from her neurologist but having done some research found that her son may have a high functioning autism (which she said is sometimes associalted with Epilepsy) and apparently there is a strong relationship with problems in Dilantin use. Depakote was also a biggy for them. They are in the process of weaning from the dilantin and will monitor his behavior then. She has been extremely frustrated practically fighting for her sons future. Knowing what only a mom can sense. I couldn't find your question about the Depakote. When did you pose it. I would like to read it and give it to her. Any other info you have gathered-great! Good luck.

[Kevin Kennedy, Ph.D.]

Dear Dee,

I'm sorry to hear you're having such a frustrating time finding the course of treatment that will help your son to stabilize.

Your instincts seem to be correct - i.e., some of this behavior (rage, incontinence) is drug-related. At least on the Dilantin the untoward effects are somewhat attenuated.

Treatment of Tourette Disorder is not straightforward. There are a number of possible routes, including selective serotonin reuptake inhibitors (a class of antidepressants), antihypertensives, and anti-seizure/mood stabilizers.

Perhaps obtaining a second opinion consult is a reasonable way to proceed, particularly with the two diagnoses of seizure disorder and Tourette Disorder.