We're off to see the wizards.....

Wish us well folks. We leave tomorrow to consult with the big brains at Johns Hopkins. They finally called last week, after several frustrated emails from me. I talked to the dietitian and one of the Dr's who runs the clinic. The overall decision was to increase Ben's meds rather than change the diet. They both said that since Ben's ketones have been so high, they felt that the diet wasn't the problem. Also that in their experience tweaking the diet (as in small changes)doesn't make much of a difference with seizure control. I've also noticed that when Ben misses food or fluids his ketones actually drop to moderate or large but when he eats every bite of food and drinks every drop, his ketones are XL. When I told the dietitian this, she said it confirmed for her that we shouldn't alter the diet. She said that even though the diet is a calorie restricted diet, some kids actually burn up their ketones when their caloric intake gets too low. The Dr said that some Doose kids need to stay on both meds and the diet in order to get seizure control. the plan is to try to regain seizure control and get Ben seizure free for one year. Then and only then will we try again to wean meds. So at that time he told us to increase Ben's depakote. This was a week ago on Friday.
Unfortunately since then Ben had another seizure. Exactly seven days since the increase in med. So the weekly seizure pattern continues. Ted and I are really frustrated and started to get depressed. I'm really worried that the Dr's might have be wrong with the diagnosis and positive prognosis. Ben's been having seizure since he was an infant and the longest we've ever gone between seizures has been 18 weeks.
Because we had gotten such good news in July and because we initially had such a great response with the diet, the recurrence of seizures is at times all the harder to bear.
We really hope the Dr's can give us some good news. Say a prayer for us and keep your fingers crossed that they'll be able to figure out the magic combination of meds and diet.
I sure would like to stop counting the days between seizures and start marking off the weeks without them.