Benign Rolandic Epilepsy

[Mayghen]

My 9 year old had her first 2 seizures last Sunday and her EEG was Thursday.  Her EEG was abnormal ( they wouldnt even do the flashing light part of the test).  We cant get in to see the Ped.  Nerologist until August and they wont treat it with meds since its benign.  Can anyone tell me what to expect and is there any warning signs I can watch for.  We are going crazy until our apt.  

[bellabeanmom]

I hope you're able to get in faster, I know how awful that is waiting!  Oh, and another idea if those don't work - since you're really concerned you can talk to your ped and have him/her call the neurologist.  Sometimes that can help speed the process up too.  We're still trying to find out what is going on with my DD.  Her neurologist thinks that it is just "subcortical" events, but isn't completely sure, as the idea would be that they would be getting better, but as she ages, they are getting worse.  She is getting ready to go in for another vEEG (will be her fifth) and possibly another MRI or CT scan - the neurologist wanted to see how it is developing.  

I hope your search for answers has a quicker resolution!!  It really is challenging to face the unknown, especially when our babies are involved!

How is your DD doing?  Have you seen any more?  Couple things that our neurologist always told us to watch for were - changes in symptoms (i.e. new or worsening), also if you see her during one of the seizures if you can try to determine her consciousness level (my DD didn't even cry when an IV was placed during one of her episodes - hers are not grand mal type) and muscle tone (not exactly sure what you're looking for with it but that was what the neurologist told us to look for).  HTH!!

[Mayghen]

Thank you very much for responding.  I will definately do that.  I cant even imagine if it was my baby,  how is she doing now?  

[bellabeanmom]

Any way you could call the neurologist's office and leave a message for a nurse / explain the situation?  There is a possibility they could work you in on a cancellation basis that way.  Otherwise, if you see something happening, you can always go back through the ER.  My 9 month old was having to wait 2 months to see a neurologist, but then an attending doctor saw her having an episode and called neurology in immediately.  HTH.  So sorry you're going through this - it is not fun to be in!

[Mayghen]

A side note on the post above.  I was reading on the benign epilepsy and other than it happening while she was sleeping, it doesnt sound like what she has.  She had a postical stage of confused, sleepy, and a headache that lasted for 2 days, but on the site I was reading that sounded more like the complex partial epilepsy.   How do they determine which epilepsy it is??  Also she lost consiousness with her 2nd seizure and the site said that was not common for the benign kind.  Im sooo confused.  If anyone can help me, I would be very grateful.