Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 Hi, our daughter is now seven, and had infantile spasms and PMG. We underwent a 5 week period of ACTH injections (NOT fun for any of us), and luckily that seemed to resolve the seizures. We went through a period of appoximately 5 years without observable seizures (meaning, we can't see the subclinical ones...), and in the past year some seizure activity has returned, but it is controllable with meds. Our neuro in NYC put her on Lomictal. She sat up late, still hasn't crawled, but has figured out how to walk, and laughs a ton! She is filled with light and love. Get all of the therapies you can while your child is still young. The more, the better! we did massage and swimming in addition to OT, PT, speech, and special ed. Phew! Best of luck to you! Thea Re:Going to see Dr. Dobyns this week! , I'd love to hear an update from your time with Dr. Dobyns. We've never been to see him, but i wanted to reach out because my daughter has PMG and infantile spasms too. Are her seizures under control? -- Quote Link to comment Share on other sites More sharing options...
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