Questions on treatment?

[calisdad]

Hello all, newbie dad here, one of my twin 6 yr old daughters was recently diagnosed with Complex partial temporial lobe epilepsy, with psychogenic crisis , any body here with same thing? also they want to put her on trileptal.
I have conserns about the side effects of this drug, anyone with a child on this as well? Im riding the fence here on what to do leave her untreated or medicate. Just to be clear she doesnt have a muscle seizure hers comes out as bad or disruptive behavior. I can explain more but lets start here thks.

 

[Nakamova]

Hi calisdad, welcome to CWE!

It sounds like the doctors aren't 100% sure of what's going on, since their diagnosis refers to both epileptic and non-epileptic (psychogenic) seizures. Those can be very hard to distinguish, especially in a 6-year-old. Was there an EEG done? Was it definitive?

If your daughter's symptoms are definitely epileptic in origin and are getting worse, then medication can be a good idea. In the best scenario, you would find the right medication and the right dose the first time round. Unfortunately, this isn't always the case, so it's possible that it might take a few tries to find the right combo.

If your daughter's symptoms are considered psychogenic rather than epileptic, then the treatment approach often involves counseling therapy of one sort or another. Have her doctors mentioned this possibility?

One other approach to consider is neurofeedback. (More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/) It's a medication-free epilepsy treatment that uses EEG biofeedback to train the brain to suppress the abnormal brainwaves and reinforce the good ones. The main drawbacks are cost (not often covered by insurance), and difficulty in finding a practitioner.

Best,
Nakamova

 

[calisdad]

hi yes we did get an eeg and the doc said it was definitive in her report, she also says that the epileptic is what was causing the psychogenic phase, she was released from care by her counsler after she read the eeg report, we are going to go for a second opinion and eeg to make sure 100 % in our minds before we start treatment. has anyone had experience with this medication? how does your child react? thanks again.

 

[calisdad]

Also my daughter acts out in a way that looks like anger, disrespect, an i dont care attiude, screaming all the time, defiant, my wife and i are running at about 89% parenting about as best we can, i dont feel we are the reason for her bad behaiver as our other daughter is fine when it comes to disapline. Is this normal for a child with this type of ep?

 

[calisdad]

anyone?

 

[Nakamova]

Because of the area of the brain where it originates, temporal lobe epilepsy can mess with emotions and behavior, and is more likely to lead to behavioral disorders. There can be a high co-occurrence of mood/anxiety disorders. So yes, the TLE is the most likely cause of your daughter's acting out, though a neuropsychiatrist is probably best qualified to figure out what's going on and how to treat it.

Regarding Trileptal: With all the AEDs, the results and side effects can vary widely from person to person. Because they are powerful meds, AEDs usually have some sort of side effects (view Trileptal's list here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000176/#a601245-sideEffects); if you decide to go ahead with it for your daughter, it's important to keep track of how she's feeling in order to make an informed decision about whether side effects are becoming intolerable, or affecting her quality of life. You and she need to weigh the risks and benefits together. It can sometimes take a few tries to find the right med and dosage, so if the Trileptal doesn't help, there may be other meds that will work better and/or with fewer side effects.