Starting the seizure journey

[Nakamova]

I hope the dose increase helps. Keep us posted.

[LyLMyssChaos]

Thanks. He's come down with strep throat now, so we can't tell if his lack of coordination, drowsiness and muscle aches are from that or the new dosing. I figure we'll give him a few more days to see if it lessens.

[LyLMyssChaos]

Talked to neurologist this AM....they said that his aches and lack of coordination could be the dosing, so they are cutting it back to 2.5 ml (partly because the original plan was only for him to be at 2ml originally.) We'll see how this works out.

[JacobsMom]

Lyl this is fairly new for my family as well, big difference my son is almost 23 and just recently started having seizures. We are on medicine number 5 due to side effects that weren't tolerable. I can not imagine having to have watched a small child go thru it however

[paradise survivor]

I wish you the very best! It may be a comfort to know that it is probably much harder on you to witness then for your son to seize. When i have seizures, my husband will demonstrate to the doctor and I am flabergasted! I had no idea...that is not to minimize what is actually going on just that it is a bumpy ride so find comfort where you can.

[LyLMyssChaos]

Well, we are 12 days since the dosing change on the Oxcarbazepine and we are seizure free...so YAY!!!

He currently has Scarlet Fever and was able to have his MRI this week. We are waiting on results of the MRI and he will have bloodwork done next week and will see the neurologist on April 14 to see how things are going.

[Nakamova]

Yay for no seizures (especially because infections can lower seizure threshold). Boo for the scarlet fever -- I hope he's making a fast recovery.

[Endless]

Double Yaaaaaaaaaaaaay for no seizures!

[mlbandura]

So glad to hear he has been seizure and the meds are working!!

[LyLMyssChaos]

Thanks everyone. The hard part is getting family members to see that there is "still something wrong" because he isn't having seizures. I'm trying to get them to understand that he's not having seizures because he is taking meds and not because he is "cured." I think there are still family members who think he doesn't have epilepsy because we have been lucky to get it "under control" so quickly.

[Nakamova]

Yeah, I think that's a common problem. My aunt used to ask me all the time "why are you still taking those meds?" And she was a doctor!

[LyLMyssChaos]

Three weeks seizure free and keeping our fingers crossed that this continues. I feel so lucky that we found a med that worked so well so quickly!

[Nakamova]

That's so great!

[LyLMyssChaos]

We have been seizure free for over a month now. The MRI came back ok and the doctor is waiting for blood results to see if maybe we can lower my son's dose a little bit due to an emergence of hyperactivity. The doctor says that as long as he continues to be seizure free that we can look at taking him off the meds after only a few years. I know it's too soon to tell, but we are excited at the prospect.

[Nakamova]

Yay! Keep the good news coming...

[LadyChaos]

Dear Lyl,
I have read online how drugs for various autoimmune disorders, such as rheumatoid arthritis, can help some people w/ epilepsy. I know that my seizures have sig. decreased
since I was treated for RA, but there could be other variables there as well!

[tase37]

Sorry to hear about your son.. I really hope the seizures will be controlled very soon!
I know how heart breaking it is to watch when your little child has seizures..wishing you hugs and lots of luck!

[LyLMyssChaos]

I thought I would update. We went through some med changes, some episodes of aggression, but now things seem to be so "normal." In 24 days we will be at 1 year since the first recognized seizure and we have not yet had to use the Diastat. He is currently taking Depakote Sprinkles 125MG 2 capsules 2x a day and it is controlling things. We've recently seen some more moodiness and it might be due to time for a dosing increase. He sees the neruo at the end of this month for another review. Our EEG's are coming back ok and it seems like the epilepsy is a faint memory! We are keeping our fingers crossed that next year he will be able to step off the meds.