RSV triggers breakthrough seizures in Roxie

[January 2, 2008, email to friends and family]

Hey all –

Some of you know about Roxie’s seizure episodes this morning, but others don’t. I thought you’d all want to know the situation and/or appreciate an update.

Roxie is currently stable and sleeping soundly beside me in Presbyterian’s Pediatric ICU. She experienced a couple of 20-30 minute prolonged convulsive seizures this morning, one at home that triggered a 911 call and the other in the ER a couple hours later. We have had her seizures under control most of today and she is heavily sedated to let her rest.

We found out that she has RSV (Respiratory Syncytial Virus) and her body’s response to fighting it likely triggered the seizures. For some reason, Roxie was showing no signs of RSV (coughing, sneezing, runny nose, much like a cold), but she may have just started down that path last night which, again, may have led to the seizure activity.

As you know, Roxie has not had a clinical (visible) seizure in about 2 1/2 years. The type of seizures Roxie had this morning were different from any others she’s experienced and their prolonged duration are classified as “status epilepticus.” This can be extremely dangerous if not treated but we think in Roxie’s case that we got them under control quickly enough that there will be no long term effects.

Right now, our goal is to get the RSV (and resulting pneumonia) gone, and a that point we will be better able to tell what kind of seizure control she has. Until then, we are keeping her heavily sedated, with a breathing tube, and seizure-control drugs being given intravenously. We expect to be here at least three more days; she is safe and in very good hands.

Please know that we have lots of family support. I’ll either send an update myself or ask my sister to in the next couple of days. Roxie’s a tough nut, and I feel certain that she’s going to be just fine. Thanks to all of you for your thoughts and prayers.

Warmly,
Phelps