Tuesday, May 30, 2006

The Amazing Camille

As I wrote earlier, back when we were being evaluated on how to treat Soren's Infantile Spasms, Soren was admitted into UCLA for observation. Here he met a beautiful little girl only a few weeks younger than him named Camille who was, unfortunately, further along in her journey with Epilepsy. Along with Camille, we met her fantastic parents, Julie and Steve. Again, in a previous blog, I fully admitted to cheating off Julie's paper, taking all that she'd learned about Epilepsy and applying what I could to Soren. And, to be perfectly honest, one of the reasons it took me so long to ask for help was because, seeing what Camille has gone through so far in her short life, I felt that, in comparison, we didn't have room to complain.

Camille has many elements to her diagnosis. Besides Infantile Spasms, she has been diagnosed with Cerebral Palsey, Cortical Visual Impairment, she has a feeding tube that has caused her many issues and prolonged hospital stays, she has a Dysphagia, which is a swallowing disorder, Gastroesophageal Reflux Disease, and Immunodeficieny. It appears that it is Camille's Immunodeficiency that is causing her Epilepsy. Currently, Camille receives monthly infusions of IVIg (Intravenous Immunoglobulins) to treat her Immunodeficiency (Hypogammaglobulinemia) and to control her seizures. The great news is that Camille has achieved seizure control with high dose IVIg treatment.

Like Soren, Camille's Infantile Spasms have caused global developmental delay. So she also does a full spectrum of therapies to build her strength and further her development. And I must say, she is one of the most amazing kids I've met. Despite many hospital stays and over 1000 seizures at her worst, Camille continues to get stronger and more interactive. Camille gives me lots of hope with her strength and willpower.

Please check out
  • Camille's Website
  • which, because Julie put it together, is CHOCK FULL of information on Epilepsy, Treatments, and a sobering
  • video
  • that really helps educate how devastating intractable seizures are.