01/08/2014

#105 Our family is feeling so alone right now. We can't find a lot of information on nocturnal seizures or what the treatment is.

[QUESTION CONTINUED] We debated between increasing the diet ratio and increasing keppra. It has taken us almost a year to get off of keppra and our neuro thinks we're nuts for going so slow. However, we always saw strange or new neuro symptoms in the weeks after we lowered it. Then, things would settle. This time they didn't.

Our son has had seizures off and on for seven years but he always had his rest (and so did we) and we felt safer when he was asleep. Now that's gone. I haven't slept for more than two consecutive hours in a week.

When Kieran fasted for twelve hours last week, he didn't seizure during his waking hours but they started again as soon as he fell asleep (minutes after). I wonder why the diet doesn't seem able to touch these nighttime seizures when it seems to have such an effect on his daytime ones.

I think everyone on here can related to just loving your child so much and feeling so powerless. Sometimes the seizures just fill up all the space in our house with fear. For the past year and a half, the diet gave us so much control. Even when we had a horrible "hiccup" in the summer, we were able to get control again with the diet. Praying that it happens again.

[RESPONSE] Sending lots of cyber hugs Andrea! I really do know your pain all too well. Our son Scott has been completely seizure free over 2 years-TWICE while on the diet- and has been completely seizure free slightly over 2 1/2 years so far off the diet (last seizure was on June 19, 2011). I doubt that I will ever be able to keep from waiting on the seizures to come back putting us through seizure h*ll again. For us the seizures Scott had while falling asleep were the hardest to get rid of and were the last ones to go. His last seizure was a minute long tonic-clonic while just dosing off to sleep. I just happened to walk into his room to put his clean clothes on his dresser and saw him go into it. For weeks I made excuse after excuse to keep going into his room when he was going to sleep. I would have slept with him if he'd let me. My husband and I still check on him a few times during the night which sometimes makes him mad at us because he thinks we are treating him like a small child. He doesn't understand our fear of seizure nightmares.

Hang in there and don't give up on the diet yet! There’s LOTS of things left to try! There were more than a few times I wanted to give up, felt so alone and thought the diet had quit working or that "this was as good seizure control as we were going to get", but then we'd try something new and things would change again. Not always a good change, but when the great changes came I was so glad we hadn't gave up! Every second we were on the diet-both times(over 9 1/2 years total!)-were well worth it to get all the keto miracles we were eventually blessed with. I'll be praying that you guys get keto miracles again soon. HUGS, Fay