The Skinny

On March 8th life took a different turn for the LeRoy family. Hewitt had been playing in our little backyard and we found him on the ground, out of it and unresponsive. We immediately called 911 and by the time we were en route to the hospital he was awake and back to his normal self. None of us really knew what happened and the Dr.'s could only guess. They did an EKG and a CT scan and when all looked normal sent us home. 3 days later he was sitting at the dining table and slumped over his bowl and had a seizure.We called 911 again. They took him to Children's hospital for a second time and observed him for a little bit. Much to our dismay and despite our asking, they didn't do any further testing that day. They prescribed an anti-epileptic drug for him and sent us home. On our way home he had another, more intense seizure in the car. We then drove to the hospital, they got us in and proceeded to do a couple tests. They gave him an iv and oral dose of the medication they prescribed and then sent us home late that night. We went home with a referral for an EEG and a follow up with a pediatric neurologist. We went home with no idea as to what would follow.

Over the last 7 weeks Hewitt has had at least 5 different kinds of seizures. These come in all different forms from short ones that make him stare off, short ones that make him fall hard to the ground or forward to the table, off the couch, etc. long ones that make him fall to the ground, long ones that freeze him wherever he is standing, short ones that make a limb go tense which sometimes causes him to fall if it's a leg, or throw whatever is in his hand if it's an arm, or sometimes he hits himself in the face. (not funny at first, but now sometimes we get a little chuckle if he's not hurt. we've got to laugh at something) He has these little storms in his brain and sometimes he just stares off barely able to get 3 words out of his mouth for 30 minutes at a time. When these happen his lips are often quivering or twitching and he often falls from side to side.

About a month ago we met our pediatric neurologist and she diagnosed Hewitt with a rare form of epilepesy called Doose syndrome or Myoclonic Astatic Epilepsy. Less than 1% of children with epilepsy have Doose/MAE. It always seems to be changing. Just when I think we're getting into a pattern, something about that pattern changes. It is incredibly unpredictable and hard to treat. The seizures tend to be resistant to anti-epileptic drugs and it often takes a very long time to find the right drug combo. Some people never find it and end up using other treatments. There are steroid therapies and a special diet called the Ketogenic. These are options down the road for us, but for right now we are trying the meds. I don't know what else to say about it other than we hate it. We wish it never darkened our doorway, but it's here and now we have to learn to live with it and raise our child with it. Only God can give us the strength we need to do this right and for once in my foolish little life I am glad to lay something at His feet and beg Him to take it from me. I can't carry this burden without Him, and I don't want to try. A friend just emailed me this passage and it made me cry to read these words. I do not want to be consumed and I don't have to be!

Lamentations 3:17-26
I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD.