Hello, Just looking for other people's experiences/advice!
My little boy was born in January, at 37w, had a failed induction and csection due to him not growing since 34w and blood flow being compromised. Unfortunately he couldn't breath on his own and need sedation and intubation due to respiratory distress syndrome and jaundice. He was hospitalised for 11 days and other than reflux and CMPA he's done well since.
In August he started having tremors when I fed him to sleep his arms and head would vibrate rhythmically for a couple of seconds up to a minute or so. This happened almost daily for a month before he was put onto neocate and a higher dose of omeprazol, which seemed to almost eradicate them. However he started aggressively throwing his head back and twitching it to the side repeatedly and the tremor in his arms and head started happening when he was awake instead. Another couple of weeks have passed and now he's having episodes where he blinks rapidly over and over whilst twitching his head to the side and the sleep tremors have started up again but include his legs now.
He's had 2 EEGs which haven't shown the trace for infantile spasms and he's waiting for an MRI. Developmentally he seems to be on target.
I feel so lost and helpless and I just want to know what's happening to my boy!