Daughter really having it rough

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demioyin

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Hi, I'm new here and looking forward to sharing experiences with those of you who have been on this road for a while. My daughter has been on anti seizure drugs since she was 3yrs, she's 19 now and the past few months have been really rough. She's aggressive, short tempered, and difficult to carry on a normal conversation with. Coupled with all that, its becoming obvious that she has some mental retardation. Her last doctor added phernobarbitol to the tegretol she'd been taking for years, and we guess that could be part of the problem, as at the initial stage when this drug was tried it made her terribly hyperactive and it was immediately withdrawn. its been withdrawn again now and trying to settle her back on tegretol.:ponder:
 
Demioyin,

Welcome to the Forum! I'm glad you found us here. :)

I'm sorry your daughter is struggling so. As if seizures aren't enough, the medication can make things doubly difficult.

I assume the doc added the phenobarbital because her seizures weren't under control with Tegretol alone?

Here's a NIH handout on Phenobarbital. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000542#a682007-sideEffects
Also one on Tegretol: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000620#a682237-sideEffects
Phenobarbital can cause excitement, especially in children. She's a young adult now, but the same side effect can apply. Tegretol can cause anxiety, confusion and memory problems, loss of touch with reality, among other things.

Has she been tested by a neuro-psychologist? I'm wondering if the developmental delays that you suspect are actually thinking and memory problems caused by the Tegretol. Another drug, Trileptal, made incredibly mentally slow. I had trouble understanding and answering people, I made huge mistakes many times a day, and was deeply depressed. I pretty much had pudding for a brain. If someone had first met me while I was on that stuff, they would have thought I was developmentally delayed, too.

Epilepsy and developmental delays can be comorbid (happen together). In some cases they've found the cause:
Genetic Defect Found to Cause Severe Epilepsy and Mental Retardation
Click to expand...
http://www.sciencedaily.com/releases/2010/10/101012151232.htm

It's my experience that when I took two drugs at once, it created different side effects entirely than I had on each drug alone. So for her aggression could have been the two drugs together, or one alone.

There are lots of parents in here struggling with lots of issues, so you've definitely come to the right place. Robin has a daughter about your girl's age. I'm betting Robin will chime in soon.
 
Hey Demioyin, welcome!

I'm with Endless -- fiddling with meds can upset the brain and body, and it can take a while for things to readjust. Moodiness and cognitive issues can definitely be caused by seizure activity, but also by long-term exposure to meds.

If you can track your daughter's moods/symptoms, that might help you get a handle on whether they are changing one way or another and how fast. Are there any other factors that might be playing a role? Sometimes hormones and/or diet can contribute, as well as different kinds of stress.

Best,
Nakamova
 
Thanks Endless, Nakamova. The tegretol definitely wasn't controlling the seizures. I'll look into those sites, Endless. Presently, we're trying to decide to take her to another epilepsy center that is more established and should be able to give her some necessary tests. What i keep remembering was that right from the beginning, when she was first diagnosed, one doctor had mentioned that we shouldn't expect much from her, academic wise. Though i discountenanced that statement at the time, i can't help remembering it now and hoping that all this distruction can be reversed.
 
hi, new here too but wanted to let you know I'm in a similar situation.
As for your daughters meds I have found my son had some difficulties with one drug but when he came off it he was back to normal. So please do think positively and hope for a medication which will work. My son has been on medication for many years, some having better effects than others.

I hope your daughter settles down once back to her usual tegretol and that you find a new drug which works with it for her.

My son has been on 2 drugs for a while, sometimes needing to change one of the drugs, but there are others which will work better, it's just a bit tricky finding the one which combination will give better benefits.

Good luck.
ambam. x
 
Thanks ambam. Our major worry right now are the nocturnal seizures. She'll be seizure free through the day but at night she has several episodes. A few days ago she had a bad fall and is currently sporting a big bump on her head. The present doctor wants to re-try phenytoin which she was weaned off a couple of years ago.
 
Demioyin,

Welcome aboard. Sorry to hear your daughter is having a rough time with the seizures and meds. Since she is 19 years old now, I agree with Nakamova, some of the mood issues could be hormonal as well as seizure/ medication.

I'm considered having refractory epilepsy and have tried many AED's, including the ones that have been mentioned in this post. For the past 20 years I have been on 2 meds at a time, sometimes 3, and when on that much medication I was very, very depressed, moody and my hormones were haywire. And at times, I was in zombieland, especially when I was on Topamax=(dopemax). I also had nocturnal seizures at times.

Is your daughter seeing an epileptologist or a neurologist? I was sent to an epileptologist because mine was difficult to control.

Anyway, here is another website addressing these issues:

http://www.epilepsy.com/EPILEPSY/thinking_memory
http://www.epilepsy.com/EPILEPSY/moods_behavior
 
I just took a peek into one of those sites and it looks like something to sit down on, thanks Clint. I'm imagining reading thru it with my daughter, if i could only get her interested in something that would occupy her time and train her mind at the same time.
 
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