Lots to catch up on

Cailyn is still having seizures daily but she had an EEG yesterday and the bad brain waves are gone so she can slowly come off the steroids. She still has epilepsy but the bad Infantile Spasm brain waves called hypsarhthmia are done. So we are lowering the steroids and the topamax and upping the keppra. Next week we will talk about adding another seizure med in called Lamectal if needed but I'd like her to be off the steroids before adding in anything else.

I had a 30 minute phone conversation with her doctor this morning and we talked about a number of things that he is still going to investigate. We are going to do more metabolic blood work when the steroids and topamax are less.

Curt and I are also experimenting with her formula. For the next month we are going back to the soy. I've been reading all about milk and casein allergies. We already know Cailyn has a milk sensitivity but not sure if its an actual allergy. So for the rest of October she'll get soy and we'll keep track of her seizures that day, what level her meds were etc., more of a solid record. It's really going to be like a science experiment but at least it will make us feel like we are DOING something. Her doctor doesn't think food will change the epilepsy but did say any changes in body chemistry do affect seizures, when you are sick etc. so he's interested to hear what we find. Glutein free and casein free diets are what some are trying to use to help with autism so we'll see.

Here's a recent picture lounging on Saturday morning