Child Epilepsy- Help. Brand New

It sounds like your son has been diagnosed with epilepsy, yes? Was your husband at the appt - did the doctor speak plainly? For some reason people misinterpret things because docs can speak in vague or reassuring terms - doc may think s/he has been clear but people walk away thinking seizure disorder is not epilepsy or whatnot. Ask plain questions if need be so things are clear.My spouse initially pushed back on the diagnosis, did not see a seizure on early EEGs. A much later EEG did see completely new types of seizures and brought in a new round of disbelief. So after some months of meds he would not outright disagree with the diagnosis so much as disagree with the medication, so many complaints - because I was more inclined to use medication and he is against even OTC options.. I acted more conservatively with our kids but it was never accepted by him as enough. Except there was a notable difference between before meds and after and even child gave no trouble taking meds because she noted fewer episodes (aka seizures). So I once got tired of hearing about medication complaints (even after things were much better after months of increasing meds) and suggested we take child off meds and after push came to shove, spouse backed off. Because it was clear that meds helped. YMMV. Denial is a comfy place, it's scary to leave. There's a huge learning curve with epilepsy but there's also a huge acceptance curve. I was also the stay at home parent and had more time to research things and spouse was not So the other problem I've seen is that I understand docs better and spouse doesn't because I have invested so much time in reading about this. The speaking clearly for now is best, a doc who can summarize in non medical jargon is best. It's like grief, everyone is different and you will shift between stages and probably won't be in sync. The new EEG may not show as much since he's already on medication but night time seizures (some very like you describe) would go hand in hand with a frontal focus. An MRI is often clear in epilepsy so that may not help your spouse.It may help your spouse to get a specific epilepsy diagnosis with prognosis and how it often impacts a person's life - it may help your spouse eventually but it still can take time. Trileptal was our child's first medication. It notably reduced seizures and worst side effect was being tired for a few days after increasing a dose. Every person is different on meds, even similar epilepsies can vary somewhat. Learn which med side effects are considered an emergency (those are unlikely to occur). In our case they never found a med combination that fully controlled the partials. Our initial diagnosis was just partial seizures so for a few years I expected it to be lifelong seizures but our child had additional seizure types later that are likely genetic and there's a good chance she'll outgrow it - or at least outgrow the generalized seizures. The partials have become more and more infrequent. The information that is useful for your child's situation may come out in dribs and drabs - that can make acceptance harder.

I think it's impossible for spouses to always be in sync on such deeply impacting situations. But again, you can leverage the authority the doctor has with your spouse in a kind or positive way to support your child's needs. When you and spouse are with the neurologist, maybe ask clarifying questions you know the answers to that will help... e.g. How helpful is it to record episodes? Flesh out what should be recorded with him there so there's something for your spouse to have a reference for. Other questions might be about prognosis so your spouse might understand the scope of what might happen, support groups for parents, or about other actions so you can partner effectively with the doc. (Our current focus is on getting 12yo to talk more to specialists because that's an important skill which takes time to develop for anyone with a chronic condition). Different people learn in different ways - I'm a read the heck out of a situation person but that isn't the same as living it. Cut each other some slack but also start to notice what approaches help your spouse absorb/accept information. This isn't just one way, maybe ask the spouse to clarify areas of disagreement with the doc so that the spouse is owning the interactions - that is less passive so hopefully he steps up for such. Ask your spouse before appts what questions he has so you both remember those will be asked.But maybe don't overshare with possibility of epilepsy in a family, the genetics are often known to be complex, not understood in many ways, and could raise additional guilt. And not all genetic epilepsies are passed down. There is a familial frontal lobe epilepsy but it can occur without being passed down. If a genetic epilepsy is a possibility, you are going to want to ask the doc about possibility of it being something passed down a) if you are considering having another child and b) if other children you have should be tested. Genetic testing is often not covered by insurance and the testing has changed a lot over time.