Tuesday, June 19, 2012

More Bugs, More Seizures...............

Steve is currently gone at the Notre Dame Vita Institute, and I have taken this two week period to  plan a surprise for him for fathers day, I will only share part of it, because well I know he reads this.  He knows this part, but I have decided to reorganize and rearrange my entire house along with something else for his surprise.  During this time (week one of his two week departure) it seems that anything that could go wrong has.  I already shared about hurting my back which bumped my training back, but several things with the surprise has gone wrong as well (will fill you in, next blog entry).  Then to top it all off,  Sarah has more nasty bug bites and Friday night she had two seizures.  This seizure was different than past ones for several reasons. 1.) She didn't have a fever. 2.)  I did not have to give her diastat to bring her out of them, she came out of them on her own. 3)  They were not Tonic Clonic (Grand Mal) affecting her entire body. These seizures were what they call Focal seizures,  Only her right side was affected by the seizure, and they were shorter, and stopped all on their own. 

I used to work with people with Developmental Disabilities, and several of them had seizure disorders, so before all of this I had seen seizures, and know what to do and not to do.  However, seeing my own child have one, is well terrifying.  I had to call a friend at midnight to send their daughter over to sleep at my house with my other three kids, while I took Sarah to the ER.  She had a bad infections in her bug bites.....imagine that, but no fever.  So they put her on Anti-biotic and told me to follow up with the pediatrician on Monday.

I saw Dr Eisinger yesterday, and he said that this was not a febrile seizure it was a focal seizure and he recommends a full seizure work up.  I don't know why I was surprised by this, but I was.  I had just gotten to a point where every little weird twitch, or moment of spaciness wasn't putting a knot in my stomach for fear of a small seizure.  People can have seizures, where it looks like all they are doing is staring into space.  Essentially a seizure is a disturbance of the normal electrical activity in the brain,  so the disturbances can be small.  Anyway, now I am logging through all those little events wondering if they were seizures.  If I had not pulled Sarah into bed with me Friday night(due to bug bites and her history)  I very well could have missed the seizures.

I called the Neurologist at Sanford Children's this morning.  I talked to his nurse and am waiting to hear back, but it looks like another trip to Sioux Falls for a possible 24 hour EEG and MRI may be in our future.  Deep down I know if Sarah does end up having a seizure disorder, we will adjust and treat and be okay, but the thought of it, has caused moments of panic.  Most of all I feel helpless, because I can't protect her from this.  The thought of watching her go through this her whole life(yes I know I am getting ahead of myself again) breaks my heart.

Looking at Sarah now, she is no worse for the wear.  She is fiery, feisty, and full of the dickens!  She truly is one of the toughest kids I know.  She is funny and smart and still radiates joy whenever you meet her.  I can be crabby and unhappy and she smiles at me, and her smile does truly light up the whole room.  If I am ever gone (even if it is for five minutes) when I get home she is excited beyond belief.....she just radiates love.  What a gift she is.

Needless to say, I did not start my training this week, because I just don't want to leave her alone(without Steve here) while I am running around the neighborhood in the morning.  So I will start when Steve gets home....which will be Sunday.  I can't wait.  I would appreciate all of your prayers.  Thanks!

1 comment:

  1. Hi there! I'm an old elementary school friend of Steve's.

    Don't know how old your Sarah is, but wanted to share the story of my son and seizures.

    He was two when he had his first tonic clonic seizure. It was the most terrifying thing I've ever experienced. From 2-6 he had about a dozen tonic clonic seizures. We had all the tests done on him but we never got any concrete results. We thought he was experiencing some focal seizures as well.

    He is almost nine and his last seizure was a few weeks after his 6th birthday. As you might guess, I watched him like a hawk! I still do!

    Something that made me feel a little better during his "seizure years" was for him to wear a medical alert bracelet. Basically, I never was without him until he started kindergarten because I didn't want him to have a seizure and not have me with him when he came to because that part was always so hard on him.

    Anyway, I could probably go on and on about our experiences with seizures, but I'll quit now! Just wanted you to know that you're not alone!

    Sarah Rolf (nee Caba) :)