Gelastic seizures

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Cinomod

New
Messages
3
Reaction score
0
Points
0
My granddaughter started having gelastic seizures in April 2014. We have not been able to see a neurologist yet because of preauthorization delays and I know that once we get authorization, there is a waiting list for the EEG which we have to have before the neurologist will see her. What we have read on the internet has us scared silly about her future. I am so frustrated about not getting her seen quickly. There is only one clinic in our area so we have no choice about who we see. I so thankful to find this website. If any one has any tips on how to access care or gelastic seizures, please talk to us.
 
If you don't have a good neurologist in your area, I would consider traveling out of your area to find one. Having a good neurologist is really important, and while I don't know very much about gelastic seizures, it does seem pretty important to pinpoint the cause and treatment plan, so I wouldn't settle with someone who isn't a very respected specialist, even if that means travelling. You could possibly get an EEG sooner out of your area as well, and I know most neurologists will see a patient prior to the EEG. So if your insurance will let you, spread your net wider, and if they won't, see if there is a process where you can dispute it and try to push them to allow it.
 
Thank you for the ideas...I am beginning to get the "picture". I found a list of "level 4" clinics/hospitals. I can get a 2nd opinion from Barrows Hospital in Arizona, their staff will review the clinical results, etc without us traveling out of our area for the time being. Not to jump the gun, I think we might need someone who specializes in brain surgery. Does any one know who is the best? I talked to the epilepsy clinic at Loma Linda, they have a waiting list, and said people are coming from all over the US for care. We are reorganizing our efforts for next week: we have video of the seizures, a letter from the pediatrician, a personal letter from us about her history of seizures and the trouble we have with her sleeping, eating, etc., Hopefully, we will get into this clinic without the EEG being done.....
Thanks again.....
 
Honestly you probably know more about this by now than many of us (not to speak for anyone else but I haven't seen much on this particular topic on here to date). I would say try not to 'jump the gun' as you say though since surgery doesn't seem to be always indicated. I truly hope for you that you get good care quickly, with someone that you trust, and get some answers. I know you are scared for your granddaughter, and that seizures are frightening and right now there must be a lot of unknowns for you. It sounds like you are really organized and getting what you need to be sure you are ready for the appointment, and that is really good. Please take care of yourself as well, and keep us posted. We are here for support all the way through the process. Even if we don't have all the answers, everyone here has had to deal with difficult issues ourselves and understands medical difficulties and struggles. The best to you and your family.
 
Back
Top Bottom