Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Infantile Spasms
Wed, 01/25/2006 - 10:14Comments
Re: Infantile Spasms vs. West Syndrome
Submitted by AnnettaPBSaggese on Sat, 2010-01-30 - 22:47
Hi,
My 5 month old daughter was also diagnosed with partial complex seizures and Infantile Spasms but no signs of hypsarrythmia at 2 months. What did you decide about the Vigabitrin? We just started topamax, but if that does not work, we are going to have to go with vagabitrin.
I cannot seem to get a straight answer about lack of hyps with mental retardation. Is your understanding that this something we need to worry about? Her neuro says that hyps cannot spontaneously develop. Is that what you have been told?
DO you have any pearls of wisdom for us? We tried the ketogenic diet, but she was too young and had a terrible reaction to it.
Thanks!
-Annetta
Hi,
My 5 month old daughter was also diagnosed with partial complex seizures and Infantile Spasms but no signs of hypsarrythmia at 2 months. What did you decide about the Vigabitrin? We just started topamax, but if that does not work, we are going to have to go with vagabitrin.
I cannot seem to get a straight answer about lack of hyps with mental retardation. Is your understanding that this something we need to worry about? Her neuro says that hyps cannot spontaneously develop. Is that what you have been told?
DO you have any pearls of wisdom for us? We tried the ketogenic diet, but she was too young and had a terrible reaction to it.
Thanks!
-Annetta
Infantile Spasms vs. West Syndrome
Submitted by gtcoffey on Wed, 2009-05-20 - 14:45
My son Cal (4 months old) is experiencing infantile spasms but his EEG shows no sign of hypsarrhythmia which apparently means that he does not have West syndrome (or at least not yet). I am trying to learn if the spasms themselves pose a risk to his development, or is it only in cases of West syndrome where the prognosis is so poor? Much of the information I have seen treats infantile spasms and West syndrome as the same thing. But, it seems that they are separate -- though often related -- issues. Can anybody offer any insight? We are on the verge of starting him on vigabatrin, but some of the side effects (e.g. irreversible damage to the retina) have us worried. Then again, it seems that partial loss of vision would be preferable to arrested development and mental retardation. What horrible choices and brutal trade-offs we are being forced to make for him!