As many of you know Lauren went into the hospital last Monday and she is still at Primary Children's now (almost a week).
The night after we started the MCT oil Lauren went into a bad grandmal cycle. She was having one then going postictal then having another. We gave 3 doses of her rescue meds (diastat) and it had little effect. After 20 or so grandmals we took her to the ER and determined she was in some sort of "status" (non stop seizures). It took till 3-4am to determine that she did not need to go to intensive care but could be admitted on the regular floor. She spent 2-3 days in "brain fog". She looked like she was in a coma-but it is not the same thing. They have preformed numerous tests (again) _MRI, blood, urine etc to see what the change could be. SO far everything has come back normal (again). She has come out at of the "fog" but is still in bed unable to walk or talk very well and is on a high dose of Klonipin and Valium every 4 hours (rotating drugs). We are hoping this will break the cycle. We are having a conference call on Monday morning with hopkins and primary childrens neurologists to see what the game plan will be. We may have to start the anticonvulsant game again, which is really hard to swallow. We know the medicines don't work and sometimes make the seizures worse along with the bad side effects. We have no idea why she went into status-THe nature of the syndrome? We don't know if the diet will continue to work. They say it usually doesn't stop working all of sudden-who knows? Time will tell. I will try to keep this updated, I think we will be in the hospital for sometime. Some have asked if it is okay to visit Lauren-we would love the visits, but we can't predict the state she will be in. She is in room 2037 atPrimary children's hospital-for those that would like to come. Thanks for your prayers and support.