Seizures, Seizures Please Go Away!

At about 10:30 p.m. last night Robby had his second Tonic Clonic seizure. Thankfully Rob was there to help me, Rob screamed for me and I knew something was wrong. When I got downstairs all I saw was Robby’s eyes fixated and then his mouth started to move crazy, as I got closer I could see his muscles moving in his little legs.

I grabbed the phone called 911 and got the Diastat. When I got back in the room Robby was foaming at the mouth so I grabbed a pillow and we laid him down. Rob held his head and all of a sudden he threw up…. poor Rob got hit…. we quickly moved him on his side and I realized he had footsy pajamas on…ugh, I thought “Why did I put these on tonight?!” We got them off and I started to read the directions on how to administer the Diastat. We had never used it before and had hoped we never would have to but God had other plans for us at the moment. The 911 operator remained so calm with me and must have thought we were nuts because all of a sudden Rob screamed “Don’t you remember the training video we watched, just stick the ______ thing in him!” So I did and it worked.

Oh my gosh were we so scared, Then the ambulance passed the house and I ran outside to wave them down…. Rob stayed with the baby as the EMT’s did their thing. They asked us tons of questions and then they looked quite puzzled as we explained to them about Robby’s Leukoencephalopathy and how it resembles a Leukodystrophy but was caused by a virus and how he uses a walker and wheelchair and only has a few words. Rob looked up at me and finally said just get them the “Bible.”

I keep a detailed 21 page bible on Robby’s medical issues with everything someone would need to know just in case something would happen to me. I am a little bit on the neurotic side and very controlling when it comes to the baby’s health. I have to be.

So down I came with the bible and the huge portable binder with all his medical records.

The ambulance workers and ED Docs appreciated it very much.

By 11:30 we were in the ED. They drew med levels and electrolyte levels to make sure nothing was brewing in his little body. Everything was good and we will have the Lamictal levels in a few days. We were sent home with a sleepy baby in the (post-ictal)

phase of his seizure. This is the phase where his body is exhausted, sleepy and weak.

Needless to say we all got home and crashed.

Today’s a new day he is doing well and it seems that the seizures will stay whether we like it or not. But just so ya’ll know “we don’t like it!”