matromes: partial seizures

Discussion in 'General Parenting' started by Sara PA, Apr 26, 2008.

  1. Sara PA

    Sara PA New Member

    I didn't want to hijack Nancy's thread.

    In response to your questions: To SaraPA: How was temporal lobe partial seizures diagnosed? What are symptoms? Trying to diag neuro problem in 12 y/o son.

    My partial seizures were diagnosed when the problems stopped once I started on an anticonvulsant for my grand mal seizures. I could tell my son was having them when he was a toddler. I could see in his eyes that he wasn't there when he went into his rages. That was 21 years ago. To this day, when they occur, the duration is the same (45 minutes) and they are of a predictable pattern of onset, escalation, deescalation, recovery. He also has sensory hallucinations (sounds, odors, tastes) which last less than a minute. Neither of us have positive EEGs.

    The temporal lobe controls things related to emotions and the senses. Some wayward electrical impulses flying through it can cause all sorts of behaviors and/or emotions. My son and a friend with TLE both experience paranoia as auras to their seizure activity. If the brain can do something, some wayward electrical impulse flying through that little part of the brain that controls that specific behavior/emotion can make the brain produce that behavior/emotion for no apparent reason. Anger without cause. Smelling things without odors. Contract or relax muscles.

    With the current state of the science, the temporal lobe which is deep in the brain is difficult to read, even when seizure activity is occurring. It is estimated that the EEG fails to detect about 50% of temporal lobe epilepsy. That means diagnosis is pretty much made like all the disorders being discussed on this site, It's often based on observation, reporting, and response to medication.
     
  2. susiestar

    susiestar Roll With It

    Sara, I am sorry your son is still having these seizures. And that you are.

    They say my migraines MAY be a type of seizure activity, but nothing shows on the EEG.

    I know my daughter's epilepsy was a TOTAL surprise - I really pushed to get it done based on YOUR advice, Sara PA. I don't know if I ever said this, but THANK YOU SO MUCH!! My daughter would have been on stimulants or stratterra because they kept saying it was ADHD.

    We are still homeschooling her - planning to enroll her in junior high for 8th grade in the fall. I want one more neuro visit (anyone in OK or wanting to come to Tulsa for a GREAT, FABULOUS, AMAZING child neuro PM me for the info!) and to make sure her seizures are controlled.

    She is not happy to have the absence epilepsy, but knows it will always be with her.

    I will say that the pain syndrome I am experiencing is explained much like the seizures - little bits of electricity where they shouldn't be. It is currently destroying MY life, but there is new research and hope for pain treatment for WOMEN. They are finding (what a shock, right?) that males and females react differently to things, and some medications ONLY work for women, some ONLY for women with a certain gene, and some ONLY for men.

    I have a feeling that they will find seizure treatments need to be different for males and females, in part based on new research.

    Again, Thanks SaraPA, for pushing me into having the children given sleep deprived EEGs when ADHD like problems showed up.

    Susie
     
  3. BestICan

    BestICan This community rocks.

    Hi, in case it helps, I can tell you about how my son's seizures were diagnosed:

    He has partial complex seizures, and his first one occurred in his Kindergarten class at school. The school nurse called and put difficult child on the phone. He said, "Mom, I feel funny in my head." The nurse said that he looked fine but a little droopy. We both agreed he should be sent back to class, which he was, and before long he was sent to the office for biting another child (which he'd NEVER done before). To this day I feel horrible that I didn't take that call from the nurse seriously - it would be a few more months before we took him to a neuro.

    difficult child had some seizures that he was aware of and experienced consciously, and some that he didn't seem to be aware of. During the ones he remembered, he said he felt a sudden onset of terrible fear, like something very scary was right behind him. Watching him, he just seemed to stare a bit, and he could sometimes respond in a dazed whisper if I asked him a question. The staring would last maybe a minute. Then he'd "come back," responding normally, but he'd become very tired and pale, and maybe even fall asleep for a few minutes. Often I failed to notice the seizures, but I began to rely on the tiredness episode as an indication that one might have happened recently.

    The worst part as a parent: for hours before and hours after the seizure, he'd be incredibly revved up, like really severe ADHD, unable to control his impulses, absolutely unable to stop! Behaviors were much worse after the seizure than leading up to it. With the benefit of hindsight, I could often tie a known seizure to several previous hours of uncontrollable behaviors. I'm pretty sure that if I didn't have such a verbal son who could describe his experience, he'd have been misdiagnosed as having bi-polar because his moods were so different from day to day. His K teacher told me one day, "The difficult child I get in the morning is the difficult child I'm going to have all day, but I never know what I'm going to get."

    After seizures, he also had trouble remembering common words (kept saying "cowfice" instead of "sofa" and tried and tried to get the right word but couldn't), and had sobbing fits that weren't connected to anything that would normally upset him ("I miss the purple bunny I used to have!")

    He's had an MRI and a couple of EEGs. Nothing showed up on those, but he was given the official diagnosis when a trial run of the medication stopped the episodes. As far as we can tell, he's been seizure-free for almost 2 years now! His behaviors continue to be problematic but nothing like that year in Kindergarten.

    Good luck, hope this was useful.
     
  4. Sara PA

    Sara PA New Member

    I no longer have seizures, at least as far as I can tell. I haven't had one that I know of for about 25 years. My most common partial seizure affected my bowel. Fortunately for me there was a slight aura before the muscles relaxed, if you get my drift. How do I know it was a partial seizure? The day -- literally the day -- I started taking Dilantin for my grand mals, the bowel problem stopped. Logically, I was having a lot of the partial seizures prior to having the second grand mal which is when I got my diagnosis. My doctor fully expected that I would have fewer migraines but that didn't work out for me.

    Now that my son is no longer taking other medications and his brain has healed, he rarely has any sort of seizure activity. Before all the medications, the activity was quite rare. It is again. I don't know if he still has those sensory hallucinations. He would only know if someone told him the sound/smell/taste he was experiencing wasn't there -- they're real to him. Now that I think about it, I'm not sure he has memory of those few seconds when he's hallucinating. He says something ("Why don't you answer the phone?", "Why does it smell like gas in here?", "This food is burned."), I respond ("It's not ringing", "I don't smell anything", "No, it's not"), he disagrees, then the conversation ends. When I try to restart it, he acts like it never happened. Maybe he has no memory of it. I remember the day he frantically sent me looking through the house for gas. I decided to check just in case there was an odor somewhere and I wasn't picking it up. By the time I returned to the room, he acted like he had no clue what I was talking about.

    susiestar: You're welcome. There are so many possibilities for why our children's brains don't work quite right.

    BestICan: Odd that your son is hyper after a seizure. We are the opposite -- sluggish and lethargic.
     
Loading...