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...
Usually most people equate April 15 with taxes! I did but not any more since April 15, 2004! That is the day Kerstin had her first visible seizure. It was one that won't be forgotten!
I guess you're wondering why I said "visible". Her neurologist had discussed that because of her diagnosis of Cerebral Palsy, seizures could take any form. The majority of her seizures have be febrile, she does have clusters, and absence, she has had her share of tonic-clonic. This night, Kerstin's seizure came on strong and furious...it was a grand mal or tonic-clonic seizure!
- A grand mal (or tonic-clonic) seizure is when abnormal electrical activity occurs over both sides of the brain. These seizures can cause whole-body movements and loss of consciousness. After a seizure, kids and teens may be confused, tired, or have a headache. These are managed with medications and, sometimes, a special diet or a device that stimulates a specific nerve. ~KidsHealth.org
Seeing her laying there, it seemed like she was looking through me, like she was there but not totally. Nothing I could do would stop it and at the time she was not on Diastat. If you know me, you know what I did...called my sister! After the seizure didn't stop after a few minutes, we took her to the ER. She ended up being hospitalized for a few days.
This lead us on yet another journey...more MRI's, and EEG's.
Kerstin would be placed on seizure medicines, and under frequent visits with her neurologist.
I think it was the Fall of 2004 when her doctor wanted to do an in office sleep study on Kerstin to check her activity while she slept. One attempt did NOT work because my daughter is such a sly little girl, she would not fall asleep, even after she was given the "sleep aid"...as soon as we pulled away from the office she was asleep.
So the next attempt was successful. I got to sit in a huge rocker recliner and hold her while the test was administered. We had fair warning that the appointment would last about 3 hours. It really did. Kerstin also had a seizure during the test, while I was holding her and I didn't even know it!!!
At times it seems like she is doing really well, then they seem to come almost back to back. There is always a time I can almost guarantee that she will have at least one seizure and it is around this time of year. It is so eerie, but since 2004 she has had at least one seizure on or near April 15!
Case and point, she had one on April 14, 2014 at 3a.m. I made a Facebook post to talk about the eeriness of the April seizures.
We will be traveling those two hours one way on Monday to her neurology appointment...another update coming soon.
More to come...
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