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Seizures

My 32 month old toddler has been experiencing febrile seizures ever since he was one year old. At first, the seizures occurred when his fever spiked but they later started to appear at low grade fevers too. He was seen by a neurologist and had an EEG and MRI done. The EEG showed a slight "spike" whereas the MRI was completely normal. Since his seizures were reoccurring, he was put on clobazam.  We were told these seizures are not going to cause any damage to his brain and the medications are there as a precaution only. His milestones are not quite there yet, he is not talking and his motor skills are slightly off too. He is scheduled to see a speech therapist and a physiologist but that's a few months away. The most recent two seizures (one just today) occurred when he was sleeping with NO FEVER present. The seizures lasted about 1-2 minutes and his lips turned slightly blue.

We are very concerned as you can imagine and every phone call to the doctor results in a 2-3 month wait before they can schedule him in (we are in Canada).  I am at my wits end and would like some answers sooner than later. Could this be something more serious than febrile seizures and why isn't the medication working? Any ideas, thoughts? Thanks in advance.
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My parents have told me many times how they felt when they looked down at their helpless little girl going through this and could do nothing to help me.  Hopefully you will be able to keep his temp from getting too high and that that will keep him from having any more of these.  I pray that he doesn't have any problems later on from them.  Just keep an eye on him as he gets older.  When my seizures started at age ten, no one else noticed and I didn't know what was happening.  I would be writing a sentence answer to a question about a story I had just read in reading class.  A minute or so later I would look at what I had written.  My answer would be what I intended but my writing went from normal to big and sloppy to very small and scrunched together, etc.  At ten years old I didn't know what was causing this.  I would erase it and write it neatly.  This continued for a year or two before anyone new I was having these.  I was ironing something one night and my parents looked over and noticed that I was just kind of standing there with this blank stare.  Next thing I new I was laying on the couch with them leaning over me asking me if I was okay.  Once I found out that I was having absence seizures, the whole reading class thing from the previous couple years made sense.  I just wish I would have had the brain surgery sooner.  Instead, I spent 20 years going through this until I finally found what reduced my seizures to a bad headache and feeling a bit out of it.
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Thanks a lot Gina!It's great to hear the insight of someone who has experienced this first hand.  It is hard to imagine febrile seizures cause no damage to the brain as they look so scary when they happen...
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When I was an infant/toddler and teething, I had a couple febrile convulsions.  Supposedly you have to have a high fever for it but I would do this at temps of less than 101 degrees F.  The doctors tried me on some medications but my mom said I acted like I was seeing spiders everywhere so I wasn't on it that long.  They decided that I just wasn't allowed to have a fever from then on.  At the slightest appearance of my temp going up, they would give me alcohol baths (using rubbing alcohol on my underarms and groin) or ice baths (putting me in cool water) to quickly get my temp down before I had another convulsion.  I think that the general belief is that these do not cause permanent damage.  However, I would disagree based on my experience.  After those few convulsions, I was fine until I was ten years old.  That is when I hit puberty.  At that time, I started having absence seizures.  I spent the next 20 years having absence seizures and a few times grand mals.  I then searched out solutions because the medications I tried never worked for me and made me feel drugged.  Six years ago I had surgery to correct the problem.  My seizures were starting from an area of scar tissue in my temporal lobe.  My doctor said that it may very well have been caused by the febrile convulsions.  Since the surgery (removal of the scar tissue), my EEGs are still not normal but when I have a seizure, it manifests itself as a headache.
For starters, I would try to keep him from having even a low grade fever.  Beyond that, I would see if I could find any other triggers.  For me, if I had caffeine, I would have a seizure.  During my menstrual cycles I would be more likely to have seizures.  If you can find a certain food,a lack of sleep, etc. that triggers them, it will make it a little easier to control them.  Hope this helps.
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