Wednesday, 26 March 2014

Seizure monster

Lately 2 of my children have been struggling with seizures - the seizures are like "monsters" that are continually stealing from my children.  You never know when these monsters will strike, how much they will take and what they may leave.

Yesterday for example we woke up for our day and you could just tell when you looked at my son that it wasn't going to be a good day for him.  Within an hour of being up he had had his first of a cluster of many seizures for the day.  For my son he has an "aura" quite often before the seizure he feels dizzy and his balance will be off making standing and walking difficult.  He will then have a seizure that may be brief however the "postictal" part tends to really hang on.  This monster leaves a weak, scared, sleepy, dizzy, nauseous boy that doesn't have the energy to do anything other than lie on the couch.

Not knowing how many times this monster planned on striking yesterday we continued with our planned activities for the day, multiple therapy appointments.  Within the first 15 minutes of therapy the monster struck again which put an end to therapy for this child.  We never know how our day will play out, will we be able to do what we had planned?  Yesterday did not get any better we continued this cycle all day never fully recovering.  We have medicine that is supposed to break the cycle but it did not work this time.  We phoned our pediatrician and neurologist for help, we were referred to the hospital emergency room.

The other issue with the seizure monster is that permanent damage can be left behind.  Skills that have been mastered can be gone in a flash, skills that take months if not years to master in a child with multiple special needs.

Yesterday we spent about 7 hours at the hospital before this cycle ceased, the monster was chased away until the next time.

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  1. I hope things are going better. My niece, who's 23, gets seizures also. (Epilepsy) She's on medication, which usually keeps them at bay, but occasionally, she'll have a doozy.

  2. I'm so sorry that the seizure monster visits your sweet son too. I hope that something will help stop them very soon. I will be praying for him. Bethany suffered with multiple seizure clusters nearly everyday for 13 years until we added Onfi to her medication cocktail. I don't know if you've read her story or not. You can read about it at Thanks for linking up with us at FF!