u/22shk

Just a long post sharing our situation with my son in hopes to get any advice or insight someone might have on any of the points I bring up below… sorry it’s a lot, but I appreciate any thoughts from anyone who’s been through similar.

So little background - my son has focal epilepsy due to a genetic mutation. He goes stretches of days/weeks/even a month (one time) without seizures. When he does get them, he clusters. But current rescue medication has helped stop them so it’s been more manageable. But we’ve tried four different daily medications and combinations of them, and just can’t get him totally seizure free. He’s only 2 and was diagnosed and put on meds at 9 months so we don’t really have much to compare with whether the meds are doing anything at all for frequency or not.

At this point the neurologist is considering him medication resistant. Common with genetic epilepsies, I know. The next steps she mentioned before were stronger meds or keto diet.

I’m super intimidated by the keto diet. He is a really picky eater and it’s already hard, I feel like measuring everything will drive me crazy and if he still has seizures I’ll feel like it’s my fault for messing something up. I also hate that he won’t get to just enjoy freedom to eat things he likes. And what do I do about his older brother eating things in front of him? It’ll be hard I’m sure…but I’m probably overthinking it too just because it’s new to me.

Also don’t want to do the stronger meds. I hate the trial and error we’ve been through and all the potential risks and side effects. I hate that he’s tried so many and nothing has helped. Though I know some people have tried more than four. When do we give up??

Last thing I wanted to mention is that I have not found any triggers so far despite my best efforts to track things. The only thing I’m currently suspecting is whether blood sugar is playing a role in things. He has focal seizures and they usually tend to happen in the mornings (sometimes other times of day, especially early on after being diagnosed… but lately it’s been mornings like 95% of the time). I thought a few times maybe it was linked to being hungry, like he hadn’t eaten enough dinner the day before maybe (like I said, he’s picky at times and sometimes won’t eat much). After sleeping the whole night I’m sure blood sugar is low, so maybe that could be playing a part in it? Does anyone have this as a trigger? I don’t think he has diabetes or anything, no symptoms of that. Not sure how to investigate this.

But, I’m not sure why the seizures seem to happen every two-ish weeks (give or take a few days). I don’t know if there is truly a pattern to it because it’s not exact and sometimes changes where it’s only one week or he goes longer. I don’t know if the genetics just make it super super random.

Anyways thanks to anyone who read and has anything to share. Just at a point where I’m not sure what the next steps should be. We have an appt with his neurologist next week so I want to know if there’s anything I should be thinking about to bring up to her.

Just a long post sharing our situation with my son in hopes to get any advice or insight someone might have on any of the points I bring up below… sorry it’s a lot, but I appreciate any thoughts from anyone who’s been through similar.

So little background - my son has focal epilepsy due to a genetic mutation. He goes stretches of days/weeks/even a month (one time) without seizures. When he does get them, he clusters. But current rescue medication has helped stop them so it’s been more manageable. But we’ve tried four different daily medications and combinations of them, and just can’t get him totally seizure free. He’s only 2 and was diagnosed and put on meds at 9 months so we don’t really have much to compare with whether the meds are doing anything at all for frequency or not.

At this point the neurologist is considering him medication resistant. Common with genetic epilepsies, I know. The next steps she mentioned before were stronger meds or keto diet.

I’m super intimidated by the keto diet. He is a really picky eater and it’s already hard, I feel like measuring everything will drive me crazy and if he still has seizures I’ll feel like it’s my fault for messing something up. I also hate that he won’t get to just enjoy freedom to eat things he likes. And what do I do about his older brother eating things in front of him? It’ll be hard I’m sure…but I’m probably overthinking it too just because it’s new to me.

Also don’t want to do the stronger meds. I hate the trial and error we’ve been through and all the potential risks and side effects. I hate that he’s tried so many and nothing has helped. Though I know some people have tried more than four. When do we give up??

Last thing I wanted to mention is that I have not found any triggers so far despite my best efforts to track things. The only thing I’m currently suspecting is whether blood sugar is playing a role in things. He has focal seizures and they usually tend to happen in the mornings (sometimes other times of day, especially early on after being diagnosed… but lately it’s been mornings like 95% of the time). I thought a few times maybe it was linked to being hungry, like he hadn’t eaten enough dinner the day before maybe (like I said, he’s picky at times and sometimes won’t eat much). After sleeping the whole night I’m sure blood sugar is low, so maybe that could be playing a part in it? Does anyone have this as a trigger? I don’t think he has diabetes or anything, no symptoms of that. Not sure how to investigate this.

But, I’m not sure why the seizures seem to happen every two-ish weeks (give or take a few days). I don’t know if there is truly a pattern to it because it’s not exact and sometimes changes where it’s only one week or he goes longer. I don’t know if the genetics just make it super super random.

Anyways thanks to anyone who read and has anything to share. Just at a point where I’m not sure what the next steps should be. We have an appt with his neurologist next week so I want to know if there’s anything I should be thinking about to bring up to her.

Just a long post sharing our situation with my son in hopes to get any advice or insight someone might have on any of the points I bring up below… sorry it’s a lot, but I appreciate any thoughts from anyone who’s been through similar.

So little background - my son has focal epilepsy due to a genetic mutation. He goes stretches of days/weeks/even a month (one time) without seizures. When he does get them, he clusters. But current rescue medication has helped stop them so it’s been more manageable. But we’ve tried four different daily medications and combinations of them, and just can’t get him totally seizure free. He’s only 2 and was diagnosed and put on meds at 9 months so we don’t really have much to compare with whether the meds are doing anything at all for frequency or not.

At this point the neurologist is considering him medication resistant. Common with genetic epilepsies, I know. The next steps she mentioned before were stronger meds or keto diet.

I’m super intimidated by the keto diet. He is a really picky eater and it’s already hard, I feel like measuring everything will drive me crazy and if he still has seizures I’ll feel like it’s my fault for messing something up. I also hate that he won’t get to just enjoy freedom to eat things he likes. And what do I do about his older brother eating things in front of him? It’ll be hard I’m sure…but I’m probably overthinking it too just because it’s new to me.

Also don’t want to do the stronger meds. I hate the trial and error we’ve been through and all the potential risks and side effects. I hate that he’s tried so many and nothing has helped. Though I know some people have tried more than four. When do we give up??

Last thing I wanted to mention is that I have not found any triggers so far despite my best efforts to track things. The only thing I’m currently suspecting is whether blood sugar is playing a role in things. He has focal seizures and they usually tend to happen in the mornings (sometimes other times of day, especially early on after being diagnosed… but lately it’s been mornings like 95% of the time). I thought a few times maybe it was linked to being hungry, like he hadn’t eaten enough dinner the day before maybe (like I said, he’s picky at times and sometimes won’t eat much). After sleeping the whole night I’m sure blood sugar is low, so maybe that could be playing a part in it? Does anyone have this as a trigger? I don’t think he has diabetes or anything, no symptoms of that. Not sure how to investigate this.

But, I’m not sure why the seizures seem to happen every two-ish weeks (give or take a few days). I don’t know if there is truly a pattern to it because it’s not exact and sometimes changes where it’s only one week or he goes longer. I don’t know if the genetics just make it super super random.

Anyways thanks to anyone who read and has anything to share. Just at a point where I’m not sure what the next steps should be. We have an appt with his neurologist next week so I want to know if there’s anything I should be thinking about to bring up to her.

Just a long post sharing our situation with my son in hopes to get any advice or insight someone might have on any of the points I bring up below… sorry it’s a lot, but I appreciate any thoughts from anyone who’s been through similar.

So little background - my son has focal epilepsy due to a genetic mutation. He goes stretches of days/weeks/even a month (one time) without seizures. When he does get them, he clusters. But current rescue medication has helped stop them so it’s been more manageable. But we’ve tried four different daily medications and combinations of them, and just can’t get him totally seizure free. He’s only 2 and was diagnosed and put on meds at 9 months so we don’t really have much to compare with whether the meds are doing anything at all for frequency or not.

At this point the neurologist is considering him medication resistant. Common with genetic epilepsies, I know. The next steps she mentioned before were stronger meds or keto diet.

I’m super intimidated by the keto diet. He is a really picky eater and it’s already hard, I feel like measuring everything will drive me crazy and if he still has seizures I’ll feel like it’s my fault for messing something up. I also hate that he won’t get to just enjoy freedom to eat things he likes. And what do I do about his older brother eating things in front of him? It’ll be hard I’m sure…but I’m probably overthinking it too just because it’s new to me.

Also don’t want to do the stronger meds. I hate the trial and error we’ve been through and all the potential risks and side effects. I hate that he’s tried so many and nothing has helped. Though I know some people have tried more than four. When do we give up??

Last thing I wanted to mention is that I have not found any triggers so far despite my best efforts to track things. The only thing I’m currently suspecting is whether blood sugar is playing a role in things. He has focal seizures and they usually tend to happen in the mornings (sometimes other times of day, especially early on after being diagnosed… but lately it’s been mornings like 95% of the time). I thought a few times maybe it was linked to being hungry, like he hadn’t eaten enough dinner the day before maybe (like I said, he’s picky at times and sometimes won’t eat much). After sleeping the whole night I’m sure blood sugar is low, so maybe that could be playing a part in it? Does anyone have this as a trigger? I don’t think he has diabetes or anything, no symptoms of that. Not sure how to investigate this.

But, I’m not sure why the seizures seem to happen every two-ish weeks (give or take a few days). I don’t know if there is truly a pattern to it because it’s not exact and sometimes changes where it’s only one week or he goes longer. I don’t know if the genetics just make it super super random.

Anyways thanks to anyone who read and has anything to share. Just at a point where I’m not sure what the next steps should be. We have an appt with his neurologist next week so I want to know if there’s anything I should be thinking about to bring up to her.

My son keeps saying this when eating blueberries with a fork 😂 it sounds like something bingo would say lol. Is it from bluey and what is the context/episode, if so?