Recently diagnosed daughter.

I feel the same way. My 5 month old was diagnosed with a hypothalamic hamartoma brain tumor two months ago when his complex partial seizures started. They still are trying to catch more seizure activity on the eeg, so we have had several hospitalizations now and at times his seizures will last over the course of 2-12 hours. I’ve had to leave my job to care for him because he is so unstable at this time and his seizures vary and he continued to have small seizures throughout the day, sometimes all day long, where at times he has awareness and others he does not. Since he is so young, he has already regressed in motor, speech, and cognitive development and he cannot tell others what is happening, so as a mother I don’t even know how to communicate that to someone else because sometimes they happen every 30 seconds, sometimes every 10 minutes, sometimes he can go hours without one, and then sometimes we go into emergency protocol because they don’t stop for hours and even sometimes the emergency protocols in place don’t get them to stop. No one knows our babies better than we do, so I understand the hard battle of how to entrust the care of your child when an u predictable seizure may occur. I have yet to figure out how to navigate it. 

That has to be scary. Watching my daughter have the one have me nightmares since it happened. My daughter is currently on Keppra, but now she has this bifrontal pressure that causes her pain and multiple trips to the nurses office. My work is getting inpatient with me because I they want me back at work though I’m working from home. Why do people not understand that even on meds epilepsy is manageable yes but also very unpredictable. I’m at a loss. 

HI Jade, My Son is 13 back on Feb 9th, we found him in a seizure while playing on his XBOX.  We took him to CHOP, Childrens Hospital of Philadelphia, since he has had prior health issues, he has always been seen there.  They ran test, we got in to see a Neurologist and he had an EEG which came back as normal.  Come now to July, he starts to have these uncontrollable twitches and jerks to his arms and legs which he cant control.  We started to notice it more while on vacation in August so we made an appointment with his Neuro doctor and he another EEG done where he would have those twitching and jerking during the test.  He was diagnosed with JME  Juvenile Moclonic   Epilepsy.  about 4 weeks ago.  He started taking Liquid Keppra, since he doesnt take pills yet and ended up having another seizure about a week ago.  He is not at the max dose for that.  The doctor was not surprised that he another seizure , which wasnt as bad as the first one.  We have decided now that unless he gets hurt or has a long seizure, we will not take him to CHOP.  Thank God my husband is an EMT.  This is all new to us and something we have to get used to.  But this is the age that they get this...13-15 yrs old.