Sunday, January 25, 2009
So, we have had quite an interesting weekend!! Kennedy has begun to have, what we think are seizures. We called the on call peds neurologist and he said what I was describing sounded like partial seizures or focal seizures. He directed us to begin Kennedy on her Phenobarbital again :(
What happens is she will be just fine and then all of a sudden her eyes will go upwards, she will kink her neck to one side and she will push out the bottom of her jaw. She will do this consecutively for about five to ten minutes.
So Saturday morning we began the Pheno, however, Kennedy continued to have seizures. Since Saturday morning she has had seven seizures - the Pheno doesn't seem to be working. The only thing it is good for is making Kennedy sleep! I hate this medication!!!
Hopefully, we can get the Neurologist to see Kennedy on Monday. I don't want her to be on that Pheno any longer then she needs to be. I also want to know exactly what is going on. Brian and I have made an executive decision, we are giving these doctors at Loma Linda a couple more months to figure out what is wrong with our little girl and then we are off. We are going to take her to Baltimore, to the John Hopkins Hospital. It is supposed to be the best hospital in the U.S. for Pediatric Neurology. I am sick of being jerked around and not getting any answers. I have been patient for over five months and it has not gotten me anywhere.
Anyways, I have included the video of Kennedy's seizures to see what people think. I am hoping by having these episodes on video the doctors will be able to help us better. If anyone has seen these before, please let me know. Are these seizures......who knows!
- Stephanie
- I love to write (blog), however, I have atrocious spelling capabilities, I frequently use words out of context and apparently I never learned anything about punctuation in school. Lets just put it this way, if my English teacher were to ever stumble across any of my blogs they would probably be appalled. On another note, I am one lucky girl!! I found my diamond in the rough whom I married in 2007 and we have been blessed with two amazing children - our guardian angel Kennedy Mae (8/13/08 - 1/8/11) and Collin Rocco (5/2/11).
2 comments:
I am not an expect by any stretch of the imagination ... but my middle son does have fever (fortunately, harmles) seizures, so I do know a little about what they look like. His eyes look sideways, and they stay fixated in that spot until the seizure is over. He also will sometimes clench and unclench his fist, and keep his jaw locked tight. It's the scariest thing in the world, but with him, you just have to ride it out.
Danielle Benschop
Hi you don't know me but I have been reading your blog for a few months pretty soon after Kennedy was born I am not sure how I even came across it.. Kennedy is such a cutie pie, I am so sorry she is having so many issues and I hope the docs are able to figure out something soon for her...
Its very hard and scary not know knowing whats going on with your baby.. I have been there and my heart just breaks for you guys ...
I wanted to tell you about my son, he has partial complex seizures and they are kind of like Kennedy's but not totally.. he had his first one when he was about a year old he is now 24 years old ...With him he will be talking and then all the sudden stop talking then zone out and his eyes kinda roll but so much now that he is older and then start talking again the individual seizure are only a few seconds long, like Kennedy's look to be, he doesn't continue them over and over as much as it looks like Kennedy is doing that I can tell, but when he has had sleep deprived EEGs the doc says he is having many more that we are actually seeing .. He has been on many many different medications and I have come to the conclusion that with him they didn't work at all, or the side effects were to extreme. so he is now on no medications, I haven't seen any difference in his seizure activity...
Your doing a great job and should be very proud of yourselfs, its not easy going through what your going through and you are doing it with such grace.. Kennedy is very lucky to have you guys as her parents ...I am keeping you all in my thoughts ...
Take Care
LaDawn
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