hi everyone,
I haven't posted in a long time, but I do spend time reading here. I actually thought we were out of the woods with seizures. Early this year my son, now 19 months, was having regular seizures. sometimes 2 to 3 in a day. I started to notice a connection to diet and seizures and had him allergy tested. We only tested three things, eggs, milk, peanuts, and he came back allergic to all three.
Since that day I have kept him off those three foods and he went 9 week seizure free! Then on May 13th he had one seizure. Tomorrow would have marked another 10 weeks seizure free since the ONE he had on May 13th. He had one today. So basically he's had 2 seizures in the last 19 weeks.
Today's seizure happend within 2 hours of eating instant oatmeal, which he's never had more than a taste of before. When I googled oatmeal and seizures lots of information came up. Possibly a connection with gluten and epilepsy? Anyone know about this?
I'm feeling very depressed today. I know it could be so much worse, but when we go these long stretches seizure free I start to imagine that we're done them and won't ever see another. Then BAM it hits like a ton of bricks and the lump in my throat and stress in my head are back.
Coincidently I had lunch with a friend I hadn't seen in 15 years last week. He is near by for only the month of July doing an internship for his EEG tech studies. In talking with him I found out that there are pediatric neurologist who specialize in epilepsy. How did I not know this? Why didn't the PN we've been seeing tell us this when she diagnosed him?
Also this past week I was chatting with another friend who I haven't seen in a few years and it occured to me that he's a neurologist. it just slipped my mind what his specialty is. So I gave him the overview and his advice was also to see a Pediatric Neurologist specializing in epilepsy.
I just emailed the PN we've been seeing for a referral.
I'm curious, how many of you here have seen a specialist? Did it make a difference? Did you get any new information?
I haven't posted in a long time, but I do spend time reading here. I actually thought we were out of the woods with seizures. Early this year my son, now 19 months, was having regular seizures. sometimes 2 to 3 in a day. I started to notice a connection to diet and seizures and had him allergy tested. We only tested three things, eggs, milk, peanuts, and he came back allergic to all three.
Since that day I have kept him off those three foods and he went 9 week seizure free! Then on May 13th he had one seizure. Tomorrow would have marked another 10 weeks seizure free since the ONE he had on May 13th. He had one today. So basically he's had 2 seizures in the last 19 weeks.
Today's seizure happend within 2 hours of eating instant oatmeal, which he's never had more than a taste of before. When I googled oatmeal and seizures lots of information came up. Possibly a connection with gluten and epilepsy? Anyone know about this?
I'm feeling very depressed today. I know it could be so much worse, but when we go these long stretches seizure free I start to imagine that we're done them and won't ever see another. Then BAM it hits like a ton of bricks and the lump in my throat and stress in my head are back.
Coincidently I had lunch with a friend I hadn't seen in 15 years last week. He is near by for only the month of July doing an internship for his EEG tech studies. In talking with him I found out that there are pediatric neurologist who specialize in epilepsy. How did I not know this? Why didn't the PN we've been seeing tell us this when she diagnosed him?
Also this past week I was chatting with another friend who I haven't seen in a few years and it occured to me that he's a neurologist. it just slipped my mind what his specialty is. So I gave him the overview and his advice was also to see a Pediatric Neurologist specializing in epilepsy.
I just emailed the PN we've been seeing for a referral.
I'm curious, how many of you here have seen a specialist? Did it make a difference? Did you get any new information?
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