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LGS expectancy

Sun, 03/05/2017 - 13:15
My son was born with severe HIE(lack of blood/oxygen to the brain and vital organs). Suffered from infantile spasms since 6 months and now has been diagnosed with LGS at 2 years old. Suffers from 75+ seizures a day and is luckily to sleep 5 hours a night( definitely not all at once) lucky if he even sleeps some nights. Have been trying to manage but still haven't found the right medication. Currently working up our dose of lamotrigne and valproic acid so fingers crossed. Would love to try cbd oil but I know that it doesn't work for all and many are bias toward marijuana so the doctor likely will put it off till all meds have been tried.I know every brain and individual acts different too each different medication and no two cases are identical. Just hoping to hear positive/negative outcomes from similar situations. Just like to educate myself from all different views.

Comments

LGS is one of the epilepsies

Submitted by Amy Jo on Sun, 2017-03-05 - 19:01
LGS is one of the epilepsies they focused on for the epidiolex trials so there is research showing that form works, which is synthetic. You might be surprised what some docs think about CBD in such a difficult epilepsy - of course all docs should be careful but you might start by asking about what your doc can share with you about the epidiolex clinical results.

Thanks for the info, much

Submitted by Scull on Mon, 2017-03-06 - 13:30
Thanks for the info, much appreciated 

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