Hello all! Question... my amazing almost-12-year-old daughter is on Trileptal for her TN (TN 1st attack July 14th this year). Her current light dose has made it so she can still feel an attack happening, but it doesn't hurt. She'll just look at me, say it's happening, and go back to what she's doing. Our neurologist wants me to up her dose - at first saying to double it, but backing off to starting with a 1/4 increase, and upping by that same amount until all pain gone. He's saying that keeping her medicated so she feels NOTHING from the TN for 3 months (started at 6 months but I balked) could induce a remission. Anyone else heard this? I haven't come across anything saying meds can induce remission, or that higher meds do anything but take away more pain and give you more side effects. It's tough enough to learn Algebra on her current dose, I'm not excited about upping it unless SHE needs to for the pain. But if it will induce remission, I guess we'll give it a shot. Appreciate any feedback on this idea.
I'm so sad to hear that child has this awful disease. It's nice that she seems to be managing it and can feel the attack but with no pain. I know all of here wish we could experience that.
I've also never heard that a remission could be induced. If that were the case we'd all be inducing remission at nearly any cost I'd imagine.
I take as much Trileptal as any doctor will allow (2400mg a day) and I've never even come close to a remission.
I pray that your daughter is able to manage this. I simply can't imagine the pain I'd feel if my children had this.
Todd, thanks for your comment. It has been a nasty shock to our lives, to say the least. I can’t even explain to people what the first month was like. The number times I would spend hours with her going through an unrelenting series of attacks. While she sobbed and writhed and begged God for mercy, I would lay beside her and sob and try to do anything at all to help - and of course there was nearly nothing I could do. Then she would finally fall into an exhausted sleep when it finished, and I would stay with her for hours. Then go back to bed and sob all over my husband. And at some point in the next 1-2 days we would do it all over again. Awful.
Thanks for the info on meds and remission also. It doesn’t sound right to me, and I haven’t been able to find any verification anywhere else. We know our Pediatric Neurologiest has almost no experience with this - understandable with how rare it is in kids - but that makes me question more too.