Many of you know that Lily was in the hospital last weekend for a scheduled 48 hour EEG (which turned into a 72 hour EEG). Her developmental pediatrician and her neurologist (yes, she has both) recommended it to rule out seizures. This is common practice for children who have a regressive form of autism (i.e., speaking and developing normally, then not – which is Lily). I thought we were going in to just check a box. My kid doesn’t have seizures!
Well, she’s not having seizures. BUT she does have a rare form of epilepsy (1% of the population), in the form of having frequent electrical discharges (as much as 80% in her sleep and also sometimes while awake). Which in medical terms is phrased ESES – electrical status epilepticus in sleep. And in non-medical terms is phrased ‘Penelope Syndrome’ for the tale of Penelope, who weaves all day long and then when she falls asleep, it all unravels and she has to start again.
This could help explain why, after over a year of 30+ hours a week of therapy, my baby still isn’t talking. She’s super smart (and the sweetest and bravest little thing ever) but yet her words come and go.
This also could mean that Lily doesn’t have autism. But this new diagnosis is also no walk in the park. The only known treatment for this is medication. I’m not excited about putting my two year old (almost 3) on meds but I’ve read that this could be life-changing (with a lot of therapy still) for her. Or not. But I’m going to stick to the former.
We have numerous appointments over the next few weeks (on top of her scheduled therapies) to find out more. I was able to find one of the only pediatric ESES specialists and make a relatively quick appointment with him (often-times, it takes about 6 months to get in with specialists. We only have to wait 2 weeks). Keep us both in your thoughts and prayers,
Lastly, I’m not a bible-reader but I came across this quote. For Lily:
“She is clothed with strength and dignity, and she laughs without fear of the future.” Proverbs 31:25
C and L
We are looking for a pediatric ESES specialist, would you be able to give me the name of your Doctor? My niece also suffers from ESES.
Dr James Riviello at Columbia and/or Dr. Karen Ballaban-Gil at Montefiore in the Bronx.
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