Shauna - posted on 09/14/2011 ( 4 moms have responded )
My son is 11 months old & started having seizure LIKE episodes around 3 months old. We have yet to be diagnosed. After a 24 hour EEG, 3 hour eeg's & an MRI the neurologist is stumped. all EEG's were normal even with the episodes occurring. We were first diagnosed with benign myoclonic spasms, then sandifers syndrome (although he had been tested for reflux & it was negative) but recently that has changed...new diagnosis is some sort of rare genetic stiffening disorder. strange since no one else in the family has this yet doctor is going with this for now..we have been on tegratol for 4 days and the spasms havent changed as far as frequency but they are only lasting about 2-4 minutes where as before they were 20-30 minutes. Also, his MRI came back sligltly abnormal & they were unable to rule out PVL so we have another schedule in 6 months to follow up. he does have development delay..unable to sit unsupported, not crawling, walking or holding anything so we receive PT & OT but we can not get any steady answers...anyone else go through anything similar?