Family crisis, advice appreciated

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My 39-year-old autistic brother--who lives with and depends upon my parents--began having severe seizures (many of which resulted in ER visits) about a year ago.

My parents have done everything to try to help him, and he has been on a few different medications to prevent the seizures. However, over the last three months or so, he has become convinced that he is not having seizures at all, and that we and all of his doctors are lying to him--despite having seen video evidence of himself having a seizure. He never remembers having the seizures (which is typical and understandable), but he never accused any of us of lying to him before this began.

Whenever my mother gives him his medication (only one pill a day now), he screams at her (quite violently) that he isn't having seizures, that the pills are bad for him (he's researched side effects online), and that everyone is a liar. He does typically take the pill, but only after a very stressful ordeal for everyone.

He was *never* like this before. He has always been a quiet, sweet, mild-mannered person (as are the rest of my family). My mother is being screamed at by him on a daily basis and is becoming very depressed herself. They have taken him to therapists, but the therapists have done nothing to convince him that the seizures are real and very dangerous and have only listened to him talk (and afterward warned my parents that he could eventually become violent with them).

My parents are in their late 60s and feel as if no one is willing to help. My brother needs his medication to prevent seizures that result in him having serious head injuries (that could even be fatal) .

(A side note: my father and I both have Asperger's, and my mother may be on the spectrum, as well.)

Any advice would be tremendously appreciated. Thank you for reading!

Isn't there any sort of service like a nurse coming daily to give the med possible?

Having a social worker for his case, taking responsability out of parents hands, also might open more doors to solutions.
Translate this to usa- practices, i dk how things work over there.

Has anyone discussed the drug side effects with him? The medication may actually be making him feel really terrible, he may feel that this issue is not being taken seriously and is reacting with anger.

Is it possible that the seizures are causing brain damage and this is affecting his mood and behaviour?

Seizures can cause brain damage and so can some anti-seizure meds. It is accurate that people don't remember their seizures.

The current set-up where Mom has to have a daily fight to get him to take his meds probably creates more push back from him. This magnifies the problem. Without knowing the parties involved, I would be tempted to set up a system where Mom puts the pill out, and son takes the pill when he wants. Or in 15 minutes. This is a common and useful tool, at least in situations I have seen. Or, purchase one of those devices that automatically dispenses medications at a certain time, to remove the "controlling" aspect of it. I know your Mom just wants him to be seizure free, but that conflict right now may be making the situation worse.

I would recommend letting his neurologist and his primary care doctor know about the level of paranoia he is experiencing. He may need a different medication. Without knowing the people involved, in general what I find sometimes successful is to reframe the purpose of the medication...not that it would work in this case, but an example would be something like, "this medication stabilizes brain function." As others have said, getting a neutral third person to explain may work better than having a family member do it.

I had a couple of mild seizures many years ago and was not aware of them. I was aware that I missed time. I have to take something called Topamax for that but more for a brain related vision problem. When I got pregnant I had to stop the medication because it would cause severe birth defects in my sons limbs if I kept taking it. If I miss one dose I am very nauseous. If I miss more than that, or go up in strength on it, I have cognitive lapses-like I’ll be somewhere and not remember how I got there or where I was going. I’ll sit there for several minutes and still not remember. It’s frightening to be on some of these medications. I totally get where your brother is coming from.

I think you should do some surgical precision research on seizures and present it to him like you were doing a court proceeding. Videos, easy to follow articles, clear evidence of why it’s worth it to prevent seizures. And maybe make it clear that you guys understand his point of view and respect it, but you think the evidence on your side is simply overwhelming and he should give it more consideration.

Try CBD oil. I use it and it helps me. I am not diagnosed with seizures but I have seizure like activity. The brand I use is called Karma Farma. One thing that is great about this brand is that they make gummies that look and taste like candy. It is also a very pure CBD with no bad stuff in it. I definitely would say to try that because it can't hurt him at all. The only thing it can do is make meds work better or work a little less effectively so meds may have to be tweaked. But if he is refusing to take the meds, the CBD oil might actually help him to where it is helping with the seizures themselves or relax him enough and help him not be so anxious that he takes the meds. It cannot hurt to try it. I would definitely recommend it. They used to make the gummy version with gummy bears but they will be changing to a different shaped gummy since the gummy bear is patented. But a good CBD oil is definitely worth a try. I take 10 mil a day which is one stopper full. I do the oil directly because the gummies are more expensive. You cannot OD on this stuff so they say to start at 7 to 10 mil and add a little more each day until you see the results you want. Some people take 25 mil twice a day. I would take it twice a day but it costs $60 a bottle so I have to ration it. But even at the lower doses it really helps me.

Some people use CBD oil that has THC in it. Mine does not. Some people find that they need the THC in small doses. For me, just the CBD works fine for my needs. As long as you get a good pure oil from a reputable source, you can try both and see what he responds to best.

Thanks for the suggestions, everyone! I'm going to visit my family tonight and will pass on your thoughts.

Hopefully we can help. Please let us know how it turns out.

Maybe he hear voices in his head telling him that he doesn’t have seizures or maybe his medication is not working or it is making him worse & making him think stuff that it not true for him like your mind playing tricks on you.