1) My connection to epilepsy and seizures are my boys, Ryan (5) and Damien (23 months).
2) Our Journey: Ryan was diagnosed at 18 month’s old with frontal lobe generalized epilepsy after 12 month’s of uncontrolled seizure’s that started at 5-6 month’s old. Damien was diagnosed at the age of 12 month’s old with generalized epilepsy & we still have no answer’s to either of them.
3) A typical day in our household usually depends on our night’s. As many of our night’s are uncontrolled seizure’s that require diastat to stop, Mommy (myself) usually is extremely tired the next morning when they do finally fall asleep. Some night’s both boy’s have seizure’s, most night’s it’s one or other, but always one of them nightly. The morning’s are spent with usually baths after we wake, eat & take medicine. After our “Wake me up’s” (what Ryan call’s bath’s early in the morning) We are usually either at a doctor appointment for one of them or it’s a morning I have a doctor appointment. If were lucky we have 2, sometime’s 3 morning’s a week were not at the doctor. On those day’s it’s learning time. We play game’s, learn our basic number’s, color’s & shapes. The afternoon’s are usually lunch (possible seizure for one or both daily) then nap for Damien as Ryan goes to half day Pre-K for 4hr’s. Usually Ryan does pretty well while at school so I’m able to focus on just Damien while he sleeps as both of the seizure’s are worse while asleep. Then Ryan gets home right when Damien awakens & we spend “Story time” to calm down for our exciting afternoon’s & get ready for dinner. I cook dinner while they free play, then sometime’s one of them has another seizure. So sometime’s dinner is much later. Then it’s baths, TV time for an hour & bed. I do not sleep much (between waking up every 2hr & their seizure’s maybe 6hrs total a night) so I lay there worried about the “what if’s” with them.
4) We don’t have much support, as Ryan’s daddy is hardly involved in his life & Damien’s daddy yes live’s with us but work’s a lot. My family hardly never comes around much nor calls. I have no friend’s because they all scared of the boy’s seizure’s.
5) I would like other’s to know that my tiny little rock star’s are not viruses, Epilepsy isn’t something they can “CATCH” as that’s how everyone I ever ran into at store’s when their having a seizure or my family acts. Don’t just stand there & not help. ASK what can they do to make it easier for them. WE ARE NOT GOING TO KILL YOU as I’ve heard a few people say “stay away they can slam against you & you can get hurt & die”!
6) To date it has only gotten harder & harder for us with doctor’s that are quick to medicate but slow to find answer’s. Hopefully soon we’ll have a neurologist that would be willing to look at them, not try diagnosing me. I am hoping one day soon we’ll also get funded for Sami Sleep monitor’s for EACH of them as it would help ME sleep better & catch what their doing at night so the doctor’s see clear images or video’s of what their doing. So I can stop hearing “It is impossible for BOTH of them having TWO different dad’s to have seizure’s. For a REAL doctor to see as I do. Common link is they BOTH have the SAME mom & NOT ALL seizure’s CAN be caught on EEG.
I want to THANK everyone that does what they do for the amazing people affected by Epilepsy. As it is NOT easy for Parent, Patient, Family nor Friend’s. But because of this group & the actual Epilepsy Foundation I have learned much more than Google could ever teach me, which in return has taught me what to ask, what to push for, to never 2nd guess myself as their mother. Most importantly to ask about SUDEP & how high their risk was. The answer to that has since scared me beyond all can be BUT I am trying ALL I can to make sure I am to TRY preventing that for as long as possible. In closing, I wouldn’t know what to do without the other people that are in our same soon’s unfortunately. So I whole heartily appreciate you all. Jennifer, Ryan Jr & Damien Atly’s mother from Columbus, Ohio.