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6 month old infantile spasms

Wed, 03/25/2015 - 21:47
My 6 month old daughter was diagnosed with Band heterotopia and has had multiple seizures since the diagnosis last week. They put her on Keppra but seizures increased. They increased the dose and today she was diagnosed with infantile spasms after being on video eeg for 48 hours. How many have used acth successfully or Vigabatrin?


My daughter, now 2 years old.

Submitted by mellizarraga on Fri, 2019-10-04 - 18:44
My daughter, now 2 years old. Was diagnosed with epilepsy (focal seizures) at 6 months old. She was also recently diagnosed with a very rare disease Subcortical band heterotopia, I wanted to know if anyone else on here has been diagnosed with the same condition, has any information. I noticed symptoms from a very early age; Eye/leg twitching, dazing off, discoloration in the face/lips. She's had several EEG, MRI, Blood works, until they found a rare disease. She's currently on phenobarbital 97.2 mg and it has worked tremendously for her, she has not had an episode in about 10 months.

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