Tuesday, January 18, 2011
I spoke with the nurse practitioner from the keto team today. She wanted to know how the Keppra wean was going and I wanted to know about his lab results. I told her that I didn't think that he was having any more seizures since going down on Keppra but I haven't been counting each spasm. We were hoping that with the decrease of carbs he would have fewer seizures. She wants us to stop the wean and stay on the dose we are on. His blood ketones were actually 5.85 so we cannot increase his ratio. That is well within the normal range for blood ketones.
So now what? Well, it's not what I thought they would suggest. The neurologist wants us to down on the ratio to 4:1. This is to see if the diet is working. He thought that maybe he could be having 2 or 3 times the amount of seizures if he wasn't on the diet.
I feel like I am at a loss right now. I just want his seizures to decrease and him not struggle. It's horrible to watch my baby have a spasm and then poke his little lip out and he starts to whimper. IT'S HORRIBLE! I hoped and prayed that the keto diet would be his wonder "drug". I guess that's not the case.