Hi, new here and new to epilepsy

[happyw5]

Hi, my daughter (13 yrs) has had two big seizures in the last two years. We do have a large family history of epilepsy but this is all new to me. We are still doing tests and trying to figure things out and we are doing a lot of watching and documenting! All the tests so far have come back normal (EEG, CT, MRI, and blood tests)... Just very frustrated and scared. I'm hoping learning and reading about others experiences will help me understand more...

 

[Nakamova]

Hi happyw5, welcome to CWE!

It sounds like you are doing all the right things, looking for answers and getting up to speed with what can be a diffuse and unpredictable disorder. I hope you feel free to post here with any questions or comments.

It must be frustrating to have the tests be inconclusive. EEGs can often come up negative if the seizures are too transient and/or originate too deep in the brain to register, so epilepsy can't be ruled out, particularly if the clinical evidence (her actual seizures) is strong. Sometimes it can take several EEGs before something shows up (sleep-deprived ones are more likely to be productive), and there are some CWE members who definitely have epilepsy but have never had a positive EEG.

Because of the timing of the your daughter's seizures, it's possible that there may be a hormonal connection -- hormonal spikes can be a trigger -- so it may be worth having her see an endocrinologist or OB/GYN. Has your daughter been put on any medications yet?

 

[happyw5]

No medications yet. I have been using frankincense essential oil, the doctors said it wouldn't hurt. Of course, they didn't think it would help. You never know though.. I will look into the hormonal aspects as well. Thank you