feeling isolated and afraid for my daughter

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Hello Sophie's mom,

My son (12) has LGS too. He is a special needs kid with braindamage. He will never be independent, always will need care from others. He's in a wheelchair and I guess that is 'lucky' because it prevents him from falling and hurting himself. His seizures are pretty well under control thanks to the ketogenic diet. Before the diet he had all types off seizures, all day and night, his EEg was 99% of the time disturbed. The diet controls about 90% off his seizures and his EEG improved >70%. He is on the diet for 7.5 years now, weaning him off is no option, as soon as we decrease his ratio we see his seizures increase again. I can't imagine him living elsewhere, where others take care off him. But I do know this time will come one day... My son is younger but I can relate... I will be there one day where you are now.
 
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