Just wanted to provide an update on Camille, since many of you have inquired. Camille is one tough little baby and quite a fighter. We left the hospital on Wednesday, April 14th after a lengthy, 4-week stay. We took Camille to the ER on March 17th and found out that she had Pneumonia and a blood infection. She was also treated for clinical Endocarditis, a bacterial infection of the heart. Luckily, we caught the issues early and were able to treat all of these illnesses effectively. Camille also had surgery for reflux, which has resolved the recurring pneumonia and her discomfort. At this time, we have home nursing support while Camille finishes her treatment for the Endocarditis and to help with her feeding tube.
We’re now focused on attacking Camille’s underlying neurological issues – she was initially diagnosed with West Syndrome, aka Infantile Spasms. This is a severe, intractable form of childhood epilepsy that causes brain damage because of the constant seizure activity – at the peak, Camille had nearly 1,000 mini seizures a day. Luckily, our pediatrician diagnosed the condition very early, and we have been able to begin treatment quickly and aggressively. Over the next months, our goal is to gain full seizure control and ideally, address the underlying problem causing the seizures. To that end, I have decided to take a leave of absence from my job at Nestlé.
The range of potential outcomes from Camille’s condition is broad, and there is a great deal we can do right now to alter Camille’s prognosis. We are currently pursuing a disciplined therapy program (occupational, physical, vision, infant stimulation and feeding therapy) to help maximize her potential and are aggressively researching the latest medical treatments, of which there are many. One option is drug therapy – we’ve tried several drugs that have proven, for some patients, to control these types of seizures. We’re hoping that once Camille reaches the maximum dosage on her current medications that she will have seizure control. That, in turn, would enable improvement in her development. Additionally, brain surgery is option for some; further testing is scheduled to determine if Camille is a candidate for this course of action.
We’ve been fortunate to have outstanding medical care – our pediatrician, Dr. Bess Raker, is absolutely amazing, and we are working with Dr. Donald Shields at UCLA who is considered one of the top Pediatric Neurologists in the country and an expert on childhood epilepsy. Thank you for all your concern and prayers – we’ve had so much incredible support from friends and family. We will keep you updated, periodically, on Camille’s progress.