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My Nephew

I got custody of my nephew when he was 4yrs old. He was this tiny little gigglebox that could never seem to stop laughing no matter what he did, his laugh was so infectious to everyone around him. He has always had a positive outlook on life even with being abused by my mother, and never knowing his own mother and my brother (his dad) never having anything to do with him he never let it slow him down, he still continued to smill and giggle. I never met someone who could giggle at literally anything,and i mean drop down on the ground,cant breathe kind of giggling. Fast forward 8yrs and hes sneaking out riding his bike bc he cant sleep at night. Hes never been one to get in trouble, ive never had to spank him or really get onto him besides the normal not doing chores. Next thing i know im getting a phone call where hes a seizure. That cant be, not my child, hes always been healthy and happy. After the neurologist ran test it was confirmed that he had epilepsy. How...Why...Those where the questions i kept asking. Hes always been healthy and happy and other than a common cold here and there hes never had anything major wrong, he was born prematurely but other than that thats it. They started him on seizure meds as soon as they diagnosed him. He didnt have another seizure for almost 6months. But after that they seemed to be coming more frequently, still not too often but more than when they first started. His neurologist upped his meds but the side effects were taking a toll on him. And over time the seizures seem to be getting closer snd closer together. Within a year or so he was having quite a few a month. His neurologist finally said i think we need to send him to a specialist in mobile (we live in enterprise Alabama so thats about 3hrs away). He started seeing the doctor in Mobile and by then they were pretty frequent. I spent so much time at the school, i eventually had to quit my job. The doctor said he had retractable or intractable epilepsy, where his meds dont respond to the meds. So he wanted to talk about putting a device in his chest. By then he was on 2 meds. He saw another doc there in mobile and they put him on a 3rd seizure meds and the seizures were coming so often that i was sleeping with one eye open (when i did sleep). There was a week and a half that every day i was called to the school and the ambulance was called and we sat at the hospital allll day. They finally sent him to childrens in Birmingham via ambulance bc they didnt know how to help him when they realized this wasnt a regular seizure. Come to find out he was also having pseudo seizures. Now his care was switched to Birmingham and hes seeing doctors there and its 3 hrs away and hes still having seizures. I havent been able to go back to work and hes 17 now and he cant drive or take baths (which he really misses). He is on the football team for the highschool but he doesnt get to go out on the field anymore, but hes there for every practice and every game. He has so much heart, he just wants to play and be a teenager. He cant even sit in his bedroom alone anymore. I wish i could take this from him, and that he could be a normal teenager, but for us this is our normal now. I dont even know what i would do if i went 1 night without calling his name 100 times to make sure he was ok or if i didn't have to go to his school at least once during the week. Lives change, its hard, but if it wasnt then it wouldnt be worth doing it. He makes it all worth it though and i wouldnt trade any of it for the world.

Comments

It must have been wonderful

It must have been wonderful to have a child so full of laughter all the time, but did you ever think that it could be abnormal?  Has any doctor mentioned gelastic epilepsy?  This Wikipedia article says it is rare and often unrecognized.   https://en.wikipedia.org/wiki/Gelastic_seizureI'm not suggesting that I think this is what it is, but it is not uncommon for persons with temporal lobe seizures to experience uncontrolled emotional outbursts.I hope you all get things settled soon,Mike

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