Jenelle was admitted to Children's Hospital again on Wednesday. I emailed our neurologist Dr.Phillips late Wednesday morning to let him know we weren't seeing any more seizures, but that Jenelle was still sleeping all the time and very lethargic. He called me back to ask me to come in for another EEG that afternoon. The results of the EEG showed that there had been no improvement with her seizures, and in fact, they have become worse. He admitted her immediately because he was concerned with her being so sleepy.
Since being admitted, Jenelle has had numerous tests including blood work, urinalysis, a CT scan and spinal tap. All of those tests results were normal. Dr. Trice is another neurologist who covering for Dr. Phillips today, and she informed me this evening that Jenelle in light of the normal results, she believes Jenelle is in what they call "Sub Clinical Status" meaning a constant state of seizure, but presenting subclinically (not visible to the eye). This can be treated with medication. She is responsive and cries when touched, so Dr. Trice does not consider this a state of "Status Epilepticus", which is much more critical.
We are taking her off of the ACTH, and the weaning process will take 10 days. They will increase her Phenobarbital through IV this evening, and hopefully she will be more responsive once that kicks in. We will start Vigabatrin as soon as possible, and will discuss that with Dr. Phillips tomorrow.
Please keep us in your prayers - we appreciate the support. Also please feel free to contact us at the hospital if you need to... we'd welcome the company! Thanks so much for the support! I'll keep you posted!