Monday, March 24, 2014
Oliver has had a rough month. My poor little boy is going through a lot of changes at the hands of Sanfilippo Syndrome continuing to strengthen its grip. A few weeks ago I received a call from Ollie's teacher saying that he couldn't bear any weight on his legs. He had a few collapses and they ended up putting him in the school's wheelchair to get him back to the classroom. I sped over to school and he would not stand. His legs just gave out.
I took him home and strapped him into his activity chair (feeding chair on wheels with a tray). I had to keep him immobilized, because he kept trying to get up only to fall. I didn't want to risk an injury. Then the giggles began. Two hours of constant giggles - at first happy sounded and then just so out of control they were alarming.
Is this a new normal and he will never walk again (this does happen in some kids with Sanfilippo - they just wake up one day and no longer walk). Or is there something wrong that we can address. So began many phone calls to his pediatrician, geneticist, neurologist and orthopedist.
As we started putting the pieces together, we realized he could very well be experiencing seizure activity. Atonic (drop) and Gelastic (laughing) are two types of seizures that could explain his strange behavior.
By the next morning, he was back to his usual self walking without any issues.
We met with our geneticist and a new neurologist who specializes in working with children who have genetic disorders. After showing them some videos of Oliver and explaining the behavior (and subsequent episodes), we all feel fairly confident that he is experiencing seizures. We are going to do a 24 hour EEG in a few weeks just to see if they can capture an episode and see what part of the brain is being affected. We may end up starting him on seizure medications.
Thursday, March 6, 2014
Matt and I were interviewed by Jill's House as part of their Sponsor a Child Campaign. They put together this lovely video to explain the importance of a place like Jill's House for families who have children with special needs. I especially love the footage of the Waverly & Oliver at JH. You can view the video on You Tube HERE.
If you feel so lead, please consider making a donation to this worthwhile organization. It has made a huge difference for our family and many within our community. You gave find more information about donating at www.jillshouse.org