Day to Day Life with Epilepsy

If I could use one word that describes what everyday life is like with a child who has epilepsy, it would be UNPREDICTABLE.

I think that would be the answer for any mom, of any circumstance, in that the only thing you can really count on is the unexpected.

Let's take yesterday for example, our son woke up with an amazing energy.  He dressed himself, ate his breakfast happily, played with his little brother kindly and with words, not fists, when there was conflict, he was joking, laughing, and being his goofy self.  I loves days like that, they don't appear too often and everyone is happy and laughing along with him.

He was able to go to school and when I picked him up at the end of the day I was expecting to see him in the same mood.  Instead, I was greeted as always by his aide but along side her was his classroom teacher, which made me a little nervous.  Then I looked at my son.  He was walking with assistance and very pale.  They explained to me that he had just vomited all over his desk, and clearly wasn't feeling well.  I felt awful for him, not the best way to end a day at school.

Well he climbed in our van, we drove across town to pick up his little brother from play school, and then headed straight home.  By the time we got home, he was better.  In fact, he had a quick snack and was ready to pick up where he left off playing with his brother that morning.  I had to check on him a few times to make sure he was ok, but it was as though nothing happened.  The only mention of it was when his dad came home later and he said, "Dad, at school I barfed all over my desk but it's done now".  Well, I guess that's that.

The evening was going pretty smooth until he had an "unexpected" seizure.  It seems to happen like this often where our son is having a fabulous day and WHAM, he hits the floor.  He had left his helmet in his bedroom and didn't have it on when he fell, so the fall resulted in a goose egg on the side of his head and a bleeding nose.  Poor guy slept for the next couple of hours, took his medication, then went back to bed for the rest of the night.

I'd love to say the seizures ended there, but that's rarely the case.  The next day he had a long one lasting over 5 minutes and I had to give him midazolam.  Actually, he had 2 seizures that were much too long and required rescue meds, one in the morning and another in the evening.  Days like that he stays home from school and we all just spend time together.

It would be a fairly safe assumption that these seizure days are hard on the family.  They are difficult.  However, we've been very fortunate to have more good days than bad lately.  Days where I'm playing referee to all of our children, where we can participate in activities as a family, and days where we feel incredibly blessed to have 3 amazing little boys.

IVIg Treatment

We took our son to the hospital this week for his monthly IVIg treatment. Since I'm not really an expert, I'll use Wikipedia's description of what that actually is:


Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG(immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:

  Immune deficiencies 

  Inflammartory and autoimmune diseases

  Acute infections.

The Neurologist's theory is that our son possibly has an autoimmune condition.  There has been no definitive confirmation but since our son's medications haven't been enough to keep away any breakthrough seizures, trying the treatment is worth a shot.  It takes 6 months to see if it's helping or not, and he just had his 4th treatment.  So, we're still in the trial phase.

He is surprisingly very calm at these hospital visits.  We take him to the hospital first thing in the morning and are there until mid afternoon.  He's only 7 but seems tougher than the teenagers.  A lot of patients require freezing before the IV is attempted and we've heard the odd cursing at the pain, but not our little guy.  He just breathes right through it, even through the 3-4 attempts it takes to find a good vein.  His strength amazes me.  


On the plus side, he gets to order almost anything he wants for lunch, watches TV, plays Xbox and sometimes gets to play in an attached playroom.  In fact, I think he enjoys being at the hospital all day with so many fun things at his disposal.  It's reassuring too that when the treatment is finished for the day we get to go home.  :)