Epilepsy...

Discussion in 'General Parenting' started by paperplate, Jan 19, 2013.

  1. paperplate

    paperplate New Member

    Hi all, I'm a newbie. I'm the mother of 4 great kids. One of which has a definite diagnosis of Epilepsy, however, new things keep cropping up. It's rather annoying because I'm not sure of any of these docs and psychs have a clue what they're talking about. And NONE of them agree on ANYTHING! At the moment he's on Carbetrol for his seizures and Prozac for his anxiety which the Neurologist says is Aspergers. However the school psychologist said it sounds more like the aftermath of his seizure disorder. Such as his sensory issues. He's actually on home instruction right now due to severe anxiety at school from the lights, noise and basic chaos of Junior High. The eye doctor ordered special glasses for him to filter out quite a bit of the light etc.. however he's still tapping, nail biting, teeth grinding, humming, whistling, paper shredding etc.... And the Prozac has him in an AWFUL sleep cycle! He gets up on the hour all night long and wolfs down as much sugary food as is humanly possible. He's put on 10 pounds in 2 weeks! ugh! He almost seems 'manic' however, prior to the Prozac (one month ago), he barely made eye contact! Now he's 'huggy', clingy and overall behaving like he's about 5 years younger! He's always has anger outbursts after his seizures. Usually throwing things, often dillusional -sometimes he hears voices talking to him in his room- which isn't schizophrenia, it's part of sensory seizures. Noises can sound louder etc...Meanwhile, my own sanity is hanging by a thread simply because I'm constantly on high alert. We don't go anywhere because my son HATES crowds etc.. So we're stuck in isolation. My oldest daughter is in college, but my younger two are at home and I'm constantly looking for things to occupy them. Friends, girlscouts, library, metroparks etc....Anything to keep them from being stuck in this isolation with my son. And they God their friends parents will pick them up, because God knows, my son won't even get in the car half the time! The neurologist calls this Obsessive Compulsive Disorder (OCD) with Aspergers....I'm completely confused simply because, AGAIN everyone who's seen him has a different opinion! Obsessive Compulsive Disorder (OCD), ADHD, ADD, Side-effects to Epilepsy, bi-polar...etc.... Right now, on paper, he's listed as Autism Spectrum and Epilepsy ONLY. Quite frankly, I won't allow a string of labels. Mainly because I know that Epilepsy itself has ALL of the same symptoms, based on the type of seizure. So it stands to reason it's that. Plus I can see the Epilepsy on an EEG, all the other labels seem like guessing games to me. The medications SUCK! There isn't one medication that doesn't have a horrible effect. Diazapam-Dillusions, Clonazapam-SAME, Lamictol-Rash, Depakote-Vomiting, Top-Memory Loss...still has severe short term memory loss. Can't get through one page in a book! So, I guess what I'm wondering is if anyone else is going through something similar? Anyone with an Epilepsy diagnosis and behavior issues? I'm at a loss. He starts with a new psychiatric next week and my concern is another list of possible labels! And I'm seriously concerned about the amount of medications has taken, he's on 3 right now (starts a stimulant tomorrow). Please help!
     
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Sounds totally like Autism Spectrum Disorders (ASD) to me, with the epilespy, of course. I wouldn't put any stock in a label given by anyone at school, anyone who is just a therapist, or anyone who is just a social worker. If you want to be sure, see a neuropsychologist. That's what I recommend.

    Sounds like the medications aren't doing him a lot of good. You may need to see a psychiatrist too for a medication re-evaulation. If you're seeing one, see a different one.
     
  3. buddy

    buddy New Member

    yup, I'll get back because I'm getting him from his social skills class but I hear you and we have similar issues. my son swears and is very angry as a result of his seizures. He is also on the spectrum. BIG advantages to embracing that label if you have it.....

    we'll talk!
     
  4. paperplate

    paperplate New Member

    Thank you. It's been a rough week. I took him to the ER Saturday and they said the sudden change in his behavior (which was AWFUL), was due to the Prozac. Two days later, at least he's calmer. He was absolutely cracking up. His behavior is already hard, that drug made it impossible to be in the same room with him! He was all over the map! However, the plus is, we now have more help. They followed up Sunday, he has an appointment Tuesday & they've recommended several different types of therapy. He's currently on home-instruction through our local school district....and seriously, I need a break. It's been 24/7 for a month now. Hopefully, we'll at least be able to get him to the point where he can go to school.
     
  5. buddy

    buddy New Member

    That was one we had to go off too. It increased aggression. Tedo's son ended up in the psychiatric hospital and on probation because of it. Glad you figured it out. (Like any medication, for some it works great)

    My son's doctor figured out he is missing the enzymes needed to metabolize some drugs so prozac can build up and kill him. Scary! We are lucky to have a doctor who thought to test him.

    Sorry things are hard right now. Do you have any pca services or any kind of support at home?
     
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