This Memorial Day weekend was very different from those of the past. It didn't start out that way! It seemed like it would be uneventful. Saturday was spent mostly indoors watching movies, Sunday was the opposite. Kerstin wanted to show me that she is the boss in these parts and I jokingly said that she was fussing at me about something throughout the day. I was in and out of the house because I was working in the yard, trying to be a gardener!
Sunday night took a sudden turn! I was sitting in one room finishing up an assignment for class when I heard Kerstin making a light moaning sound. I ran in to check on her, only to find that she was not alert and had that look as if she was looking pass or through me. The left side of face was twitching, then nothing! She seemed okay and alert, only to turn her head and everything started again. This happened over and over.
I always keep my cell handy to time her seizures and now to access my new favorite app; SeizAlarm. I found the app last month after Kerstin had a seizure. I couldn't fall asleep after it was over so, I just started reading about seizures and stumbled across a jewel. I wrote about it here. If you or a family member or friend has a seizure disorder, Epilepsy, you should have this as a resource. It works and makes the emergency contacts for you, with a map of where you are!
After, I opened the app, it immediately made the contacts for me, within minutes my sisters were with us. Kerstin had to be given her Diastat because the clusters had gone on over five minutes. So, we wait to see what's next! What happened was scary and not something you get used to. Kerstin went into a full grand mal clonic-tonic seizure with loss of alertness, vomiting, full body jerks! That brand new suction machine we just picked up Friday had to be put to work!
This seizure was relentless! It completely took over my baby's body, her eyes were so red, her body so stiff and uncontrollably jerking. It was only adrenaline that kept me from screaming and crying. More Diastat had to be given. We called Children's Neurology and the on call doctor advised to take her to the ER since they had not stopped after 2 rounds of Diastat.
There, they performed urinalysis, blood work, CT scan and chest X-ray, to all come back normal! There was no fever! What caused this? That is a mystery! We will have to follow up with her regular neurologist "ASAP" per the ER doctor. He seemed just as puzzled as I. He said, he just didn't see anything out of the ordinary with the tests they performed. He did order a level to check her Keppra levels. That could be done in the ER and had to be sent to another lab.
Memorial Day, we left the ER at 7 a.m. so, needless to say, they remainder of the day would be spent sleeping. That is what we did. For the first time in my 30+ years, I didn't spend this holiday with the family and I did not see my own mom! This seizure activity took a lot out of Kerstin too. She was probably awake for an hour or two at most on Monday. Now, we wait! Wait to see what her neurologist has to say...
Definitely more to come...