Child struggling from Epilepsy, Subependymal Heterotopia

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My daughter now 11 had her first seizure at 5months old. She was was diagnosed with a rare seizure disorder called Subependymal (Grey Matter) Heterotopia. She has struggled with keeping the seizures under control. We have tried almost every medication, and combination of. We have taken her to several specialists who all seem to say the same thing," we don't know much about it, or it is very hard to treat." Then they just tell us to try more meds. She takes 18 pills a day and 3 different kinds. She continues to struggle.

Does anyone else have a child with this type of Seizure disorder? If so I would love to hear what is working for you.



Thank You

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Jade - posted on 12/11/2010

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hi my little boy is 9 months and has epilepsy and pvnh (periventricular nodular heterotopia, and was on phenytoin and phenobarbatine but kept getting seizures, he is now on topiromate and sodium valporate and has not had a seizure for about 5 months!

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Nicole - posted on 12/21/2009

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Hi Kathy,



My daughter does not have that disorder but she does have febrial seizures. She is only four and has had 20 since she was 13 months old. She is on a medication named Val-proic-Acid. She has been on it for a year and we have been good with keeping them under control. I don't know if this will help your daughter. Julia has also been diaqunosed with another disorder NF1 or Neruofibrimatosis which may also cause the seizures. I am sorry to hear about your daughter, I hope the doctors get them under control. I hope you have a nice holiday.

Nicole S.

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