Community Forum

IS; back with a vengeance. (West Syndrome)

My daughter was diagnosed with West Syndrome at 3 months in May 2013 and was given Sabril as the primary method of treatment.  We had tried the ACTH therapy but it was ineffective. In July 2013, the neurologist stated my daughter was IS free and the Sabril was 100% effective.  We then prepared her for tapering off due to the high risk of side effects.  She was IS free prior to tapering off completely off in November 2013.  In January of 2014 her neurologist stated she had most likely outgrown the Syndrome.  On May 9th I recognized an Infantile Spasm. I immediately called the hospital to schedule a follow up due to the IS coming back and was told she would not be seen until tomorrow (May 22nd)  Since the 9th her seizures have increased in frequency and duration.  I am annotating everything that I am able to oversee, Duration of spasms, how many, behavioral/emotional changes and responses.  I have yet to find a support group within my area and have yet to speak with a parent whom has a child with West Syndrome or IS.  Has anyone had IS rebound post treatment?  Thank you everyone!

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