Tuesday, September 14, 2010

It's been a long time...

Since we've received news this liberating and wonderful.

Owen's infantile spasms (seizures) are "on their way out," according to O's neurologist and a fellow neurologist who also did a read of the EEG. They only saw a "couple" of seizures. Two. I carefully took notes, indicated times, gave detailed descriptions of Owen's "suspicious" posturing. I pushed the button. None are seizures. None of them. I feel as though I could both laugh and cry and I said that exact thing to the two neurologists who gave us the good news.

Trust me, the infantile spasms, as everything we read about them in October of 2007 indicated, have left their mark. At the time, Owen was having over a hundred seizures a day. Children with IS typically lose any abilities they had prior to these seizures (such as head control in Owen's case - I still torture myself by looking at video of him, on his belly, holding his head up) and gain very little in terms of developmental milestones. This also does not mean that Owen is not at risk for future seizures - new and different. He is. But the diet worked - it reduced his seizures to practically nothing and kept new ones at bay, for the most part. If the newest research on the Ketogenic Diet proves consistent and accurate, it may have even initiated permanent changes in Owen's brain, making him less susceptible to seizures as he grows older. Now, we get to slowly and carefully, under the guidance of a nutritionist here at Swedish, over the course of the next year, wean Owen off of the diet and slowly introduce whole foods. 

Owen's neurologist suspects involuntary muscle spasms (brought on by increased spasticity) are one of the causes behind his wakefullness and difficulty falling asleep and is going to suggest doubling the dose of baclofen (he indicated that we're using a "tiny" dose right now).

The other probable cause of Owen's lack of sleep... sleep apnea. His "slack tone" likely also creates an airway restriction problem We'll be meeting with the sleep specialist to discuss the results of the sleep study and talk about sleep positioning and a potential tonsil and adenoid removal to open up Owen's airway (a fairly minor procedure).

The neurologist attributed the rest of the arching and sleeplessness to "irritability." Actually, it's more so the case that he's stubborn, strong and opinionated and he's not afraid to let us know what he thinks... And this, I will celebrate.


Shannon said...

The best news I've heard in awhile. I'm so happy. Congratulations!!!

Corey said...

That's fabulous news! Hugs for you all.

McDonnell-Reyes family said...

It's well worth all the long days and nights in the hospital when you get some great news! Stay calm Stacey and let your mommy feelings show you the way. We are all here every step of the way!!

Mo said...

I just found you thanks to Sarah at Stand Tall but I look forward to reading more and learning about your sweet Owen.