"I also have not been on for a while, but I checked in and I'd love to share our good news. Our 12 year old son was diagnosed with rolandic epilepsy almost three years ago. He has been seizure free for over 22 months (our goal has…"
"Thanks for checking in. I am so glad your having success on Trileptal. Our DS had a VERY mild seizure early July and they increased his trileptal (of course, he was due for a blood draw the next morning. Uggh.) They increased 300 mg and it was too…"
"I was just checking in to see how your son has been? Jack had some facial tingling one morning while playing so they increased his PM dose to 600 mg. We're still doing well. Just making sure you're having the same success."
"My son has simple partial seizures and he is with it the entire time. In fact, they wake him up. He is communicative and totally aware of the entire seizure in minute detail. Don't know if this helps."
"Our son was diagnosed with rolandic epilepsy last July (his neuro does not call it benign). Our son had two seizures in 6 days and a definitive EEG approx 3 weeks later. When we went to discuss the EEG with the neuro, I told him that we had decided…"
"My daugther just started trileptal in may. she has had more seizures since starting it than she had off of it. I know that it is very disheartening. todays seizure was much shorter and not as bad. I just feel so bad for her. Good luck. Keep me…"
"Jennifer: Thank you for your good wishes and thoughts for our son. We surely hope yours gets control and holds on to it. We felt exactly as you did when our son was first diagnosed. Our neuro, however, would not hear of it. He told us with each…"
"Our update is we adjusted meds and (holding my breath) have had control since I originally posted this on March 31. We are cautiously optimistic that his meds just needed further tweaking. Giving him part of his evening dose after school (4 pm ish)…"
"Thank you for the statistic, "(95% of kids with rolandic epilepsy maintain control on trileptal at the correct dose)". I've been looking all over for it. My son has been on Trileptal for 2 months and has been seizure free but I'm…"
"I think even with a relative in the practice, you might want to diplomatically find a way to say, we need to put our child's needs first and find a ped who understands a complex medically complex patient. This can help ease out of the family…"
"While our ped doesn't manage the E at all , she always asks how she is doing with it and what the current meds are wants to be cc with all lab work. That is what I would consider to be the norm.
"I don't think you are. It is extremely important to make sure he doesn't have medication interactions with his AEDs. He should know the side effects he is experiencing. If he doesn't know if the new side effects are caused by the…"
"I would definitely look for a new pediatrician. They should be closely involved as the gatekeepers of your child's whole care. We abandoned our first pedi for similar reasons. First, it was a group practice, so I never got consistent care even…"
"I would be shopping for a new pediatrician! Sam's current ped has been instrumental for the last nine years in his neuro care as far as getting us the best referrals when we need and helping us. He is not a neuro and knows when he is not in his…"
"In my humble opinion, that is inexcusable. Please find a new pediatrician who wants to be part of your child's whole care. Ask your neuro for a referral. They know who follows and who doesn't. Even when I have to take my dd to see the…"
"i'm with everyone else. my son sees many specialists and they all will always ask what meds he's on for each condition and how well he's doing overall, in every aspect of his health. i think it's important for the pediatrician,…"
Thanks for adding me as your friend. Shows, I don't know a lot about this sight yet. Have you come across a chatroom anywhere for people with epilepsy? Also, is your child in school? I was wondering because I wonder about a 504 plan. I dont' know much about them, but a lot of people do have them. I just wanted to know if I should get one as well.