Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi ! Carlie Jae starts to have seizures at night just after she falls asleep. she cries out and then starts to go into a tonic clonic it ends quickly but during the seizure it seems fairly intense and she does this repeatedly for hours. i usually go to bed around 11:30pm and so i do not know if it continues. She then usually has a seizure in the moning around the same time. she is taking 10mg of frisium/clobazam a day for an AED I just got back from her pediatrician How frustating..nothing can be done for now have to wait and see.. They think it is the calorie increase that is causing the seizures? we went from 1000 to 1125 and she is growing a lot also Although Carlie Jae's ped said that it is unusual for Carlie to seizing that frequently at night? so prayers please that I can get through this week thanks Robyn I am mom to Carlie Jae 7 years, who was born with cerebral atrophy to her frontal and temporal lobes. Global dev delays, g-tube fed and cannot walk yet! .. She has also cental nervous system irritability and intractable seizure disorder but mostly under control with the ketogenic diet and only one AED. Carlie Jae has been ketofed since march 2001 Gorgeous red curly hair and a smile that would melt eventhetoughestofheartsthetoughestofheartsthetough estofheartsthetoughestofheartsxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Oh Robyn, I know exactly how you feel, hang in there though!!! Maybe the extra calories are to blame, we are just figuring out the calorie relationship ourselves. If it's not one thing then it's another. Does she need the extra calories? I know my daughter had fewer seizures on the lower ratio than she does on a 4-1, but the dietician tweaked it to try to get 0 seizures, now Stella's having upwards of 20 a day again. The night seizures are the worst though, Stella sleeps with us in our bed since we are so frightened of her stopping breathing. It's funny if Stella has an am seizure early while she is still sleeping it sort of sets the tone for the day. Does that happen with you? Good luck, let us know if you find the solution that works for her. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Also, Anisa who will be 10 and is blessed by being perfectly healthy! Quote Link to comment Share on other sites More sharing options...
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