Seizures with Chiari 1 malformation

My daughter is 20 months and started having syncopic episodes a few months ago.  The cardiologist said she was fine.  After having a Grand mal seizure and two abnormal EEG's with right frontal lobe focal epilepsy being the diagnosis we had an MRI.  The MRI is showing Chiari 1 malformation and I don't know what to do.  It seems like forever till we have an appointment and I would like to have some questions ready when I finally do get in contact.  I have found that with a medical diagnosis the internet just proves to be a scary nightmare of information that is more wrong than right.  I could use some resources and information.  Is the Chiari one malformation causing this and not epilepsy?  She is on Keppra now and we have had to increase her dose because of a recent seizure.  I am scared and ill-informed please help.  Nicole

[selmaS]

  Hi...well it is not something we can answer that easily...u will  have to get more testing...some will have seizures but the EEG's r normal, those I would say r more likely from the chiari..but since ur DD has an abnormal EEG she may have both which is possible.

Some develop epilepsy post op, while others develop it pre op...no one knows who is going to have this or some of the other issues related to chiari or the surgery.

Find the right Dr for both is key.....u need a pediatric chiari specialist to let u know how the chiari is affecting her overall health.

  Not knowing where u r from, I am not sure which Drs list to add so I will add a link that has all the links-http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

U have to do research to find a pediatric dr as well as a chiari specialist...this list may not have what or whom u need  as it is not a referral, but a list of the members drs they have been to and liked, and this should aid in ur research.

I know u r afraid, but keep asking questions, as that is how u will learn and how we can offer the info to help.
   "selma"