My great grandson has been on these meds now for over or almost a yr, his seizures are not controlled! Seems like getting worst!! Some days like today he had 15 drop seizures!! He is 2 yrs old and has LGS due to bacterial meningitis, so not born with epilepsy, these are not he meds he’s on. Do you think it’s time for a change?
One thing You can investigate are service dogs for people that have epilepsy. Since Your great grandson has drop seizures a service/seizure dogs are trained to bark when a person has a seizure so other people know it’s happening if you are not close to him. The dogs are also trained to roll a person onto their side using their nose if a person does get sick when they have seizure so a person does not choke. The dog would not leave his side, it will stay next to him all night long. Contact the epilepsy foundation for more information about these dogs. I learned all about them from watching a documentary.
Also, talk to them about incorporating some sort of low MG benzo maybe. I know it sounds awful. There is also hydroxozine which is prescription benadryl given for anxiety. I'm no doctor but had uncontrollable seizures for a long time. This is what works for me and is probably less (harm) on the body.
They changed me from Depakote (first one) to lamotrigine when I got pregnant. It's way less toxic to the body, even at a high milligram. It works. Nothing other then a ridiculously high MG of Depakote had before. Plz consult with your doctor 🙏
Thanks Peanuts! The parents got a dog but not trained on seizures! Would love for my grandson to have one. Will definitely pass this information to them. Thank has been my concern, him having seizures during sleep. Right now he sleeps with parents for that reason. I will look into it myself too! Have a good night.
@A MyEpilepsyTeam Member I used to take different meds as a child but none of those. But as you are saying, I'd feel uncomfortable giving answers about a 2 year old to someone instead of an adult with seizures asking about their own meds and I have taken.
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