Jenelle's Journey

Jenelle was admitted to Children's Hospital of Orange County yesterday. She woke up vomiting and because she isn't hold down (or getting) her seizure meds, her seizures have increased. Later at the ER she began to run a fever. They believe she has the stomach flu (Roto virus) which for any "normal" child would be no big deal, but is much more serious for Jenelle. She is not very responsive, so she was admitted until we can control the seizures better.

As of this morning, Jenelle is holding down some clear liquids, but still has a fever that is being controlled with Tylenol. We spoke to Dr. Phillips today and he has a "new" plan of action. She is going to have a CT scan, spinal tap, some bloodwork and a video EEG for possibly 48 hours. Because children can "grow out of" Infantile Spasms after the age of 1, we think Jenelle is no longer having those types of seizures. He is going to run the EEG to figure out exactly what is going on, and we'll most likely wean her Vigabatrin and start a new medication that is more appropriate for whatever seizure type she has. He also feels strongly that Jenelle's underlying issues are metabolic. He said that usually metabolic tests show better results when the child is sick, so now is the best time to do tests. We obviously can't start Ketogenic diet until she is better. She most likely will be in the hospital until the end of the week.

Prior to Sunday, I was about to send an update to everyone to tell you how much Jenelle has been improving. She is starting to use her right hand more, and even sucked her right thumb, and she used both hands to hold her bottle last weekend. Also at PT she began to take some "assisted" steps. She was very alert, smiling and laughing a lot. It was such wonderful progress. Anyway, I'll update when I can. Please keep us in your thoughts and prayers!