Diacomit 250mg Powder Pack: A Game Changer for Dravet Syndrome or just another side effect rollercoaster?

I started my daughter on Diacomit a few months ago, and her seizures have improved dramatically! We had some issues with low platelet counts, but her doctor managed them with a change in dosage, and it's been okay since. My daughter’s appetite has decreased though. She has lost some weight. It’s been tough, but we’re sticking with it for now.

I was really worried about trying Diacomit, because of the side effects, but I think I was more afraid of the unknown. So far, it's been good to me, and I feel like I have more control over my seizures. If you're considering it, I recommend talking to your doctor about lowering the dosage gradually.

I would have never thought I'd be happy about feeling sleepy all the time, but at least it means my seizures are under control.

Wow this is all good information. I have a friend who has been using this for a while and I think she’s now considering switching medicines.

I think this kind of really deserves its own forum or something. Just one thread isn’t enough for all we can discuss. It’s a big decision.

I can't believe how many side effects are listed. I'm scared to try it on my kid.

I have had issues with shakiness and trouble controlling body movements. My doc suggested a change in my diet which did help a bit. I would recommend to anyone looking at this to really talk to your doc about your diet.

I've seen some really negative reviews of this drug online. I think it's important to remember that everyone's experience is different. Talk to your doctor and make an informed decision. Don't let the negativity scare you away if you really thing it’s right for you.

I've been on Diacomit for a few years now, and it's been a significant improvement for my seizures. It's definitely not without its side effects, but my doctor adjusted the dosage, and we got them under control. Always consult your doctor and do your own research. This is a heavy duty medication.

I've been using Diacomit for a year now and I can say that the side effects are real, but they are manageable. I've had some issues with dizziness and drowsiness, but my doctor adjusted the dosage and it's been much better. If you're considering it, talk to your doctor and don't be afraid to ask questions.