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Help needed
Fri, 12/13/2019 - 04:22Hi my daughter is about to turn 3 years old. Since she was born we noticed her do shudder movement. At 6 months old she stopped breathing in her sleep twice where rescue breaths were required.
Since then we have noticed vacant behaviour, staring for several seconds eyes roll up and lids flicker and she’s back in the room. She always rubs her left eye after these episodes. Following them her behaviour changes for 10min she’s quiet and sometimes cuddly. Then goes manic and sometimes aggressive.
Over the past couple of months she’s been complaining of transient vision loss and commenting what’s that smell when there isn’t anything obvious.
She is very light and sound sensitive too.
We seem to be going round in circles with a diagnosis they keep saying epilepsy but then say they won’t medicate as she’s not developmentally delayed.
Had EEG and MRI the EEG showed something but says of doubtful significance the MRI last year showed hyperintensities on the frontal lobe they don’t know why the MRI was repeated a month ago we are still chasing the results.
Has anyone else experienced this?
Hi, Thank you for posting, we
Submitted by Anonymous on Fri, 2019-12-13 - 09:11
Hi, Thank you for posting, we understand this must be very frustrating and upsetting for you all to experience. It’s important that you're continuing to follow-up with your daughter’s healthcare team for further explanation of her test results and if she continues to experience these episodes you describe or any changes in behaviors, moods, or symptoms. It can be challenging to find a healthcare team that you’re comfortable with, but if you feel you can’t talk openly with her healthcare team or aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding an epileptologist, (epilepsy specialist) near you, please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist You all may want to consider keeping a journal or diary, to document these episodes she's experienced in as much detail as possible to review with her doctors. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking episodes, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies, that may affect wellness, which can be shared with her healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline