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Feeling crap, Ds has severe epilepsy, seizures out of control, dunno wat to do anymore :(

29 replies

caitlinnjacksmummy · 12/04/2008 16:20

Hi everyone, feel so shit, just want to cry all the time, my ds has epilepsy, he is 13 mnths, consultant thinks severe myoclonic epilepsy, but awaiting mri results....used to be that ds would just have seizure at night or one during the day, but at moment he can take more than one, also used to be that he would just do it waking up or going to sleep, but now he can do it wenever... today he has done it at half past 12 having milk, but he was v. tired, and did it during the night, approx 2am, just feel soo low the now and just don't no wat t expect anymore, I could just open my front door and scream, feel that he has got worse since epilim was addd approx 6 weeks ago...he was already on nitrazepam, and wen first put on bitrazepam was seizure free fr 8 days, but never seen anything like that since, he is now on 4ml of nitrazepam morning n night, and 4ml of epilim morn n night too, epilim was increased tuesday to 4ml from 3ml, so fed up, also consultant told us on tuesday that his head not growing as it should be which makes him think that his brain isn't growing properly, dunno wat this could mean either, pls pls can someone reassure me, make me feel better, I am not sure how long I can go on like this............

OP posts:
sarah293 · 15/04/2008 08:30

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trace2 · 15/04/2008 08:57

aww how are you this morning?

Arabica · 15/04/2008 12:05

Yes hope you had a lovely peaceful night. Let us know how you get on today xx

mummypig · 15/04/2008 21:22

Thinking of you caitlinn, hope it all went well.

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