Kelly - posted on 05/26/2009 ( 19 moms have responded )
I have a 9month old baby girl who started having infantile spasms from 2weeks of age, started with jerking limbs. Has had 2 EEGs, MRI, lumber puncture & numerous blood & urine tests. Nothing showing whats causing spasms. Was on Phenobarb for 3months & developing at a normal age then it stopped working & she lost all muscle tone, didnt focus on anything etc, tryed Vigabatrin & Nitrazepam (didnt work). Tryed Prednisolone (steroid), this stopped spasms but she was very aggitated on them, Pead weaned her off steroid & spasms changed to tonic-clonic seizures & she was hospitalised. Now on Topirimate (topamax), Pehnobarb again & Pyridoxine (B6 med) & is now starting to develop & smile, a lot more content but very far behind in development. Still having the odd spasm but hardly noticable but will have to adjust meds to keep them under control. So nice to have a happy baby after a long 7months of hell. Would love to hear from anyone else with similar issues.