We arrived at Swedish and checked in downstairs and then headed up to the pediatric ward. The nurses were so nice about settling us in. Swedish has all neurology patients bring their own medications because it is extremely important not to change brands. So, they had us bring our meds from home and then the nurses take them and check them in with the pharmacy. Due to our previous experience at our old hospital, Rod and I chose to keep a dose of rescue meds on us. We just tucked one package in our bags and didn't hand them over. I was not going to be in a position where Owen was seizing and no one was bringing me the medication soon enough EVER again. The EEG tech came in and started hooking up all the probes. First they measure his head and mark red X's in all the right spots. Then they clean the spots with a special cleaner and apply the disks with stuff that looks like toothpaste, but isn't. Next they put gauze pads soaked in the most vile smelling adhesive known to mankind and place them over the disks. Then they use a little air/light gun to harden the adhesive. The whole process takes about an hour and a half. Finally they give him a little hat and hook up his monitoring pack.
Saturday, we got Owen all unhooked, a pretty long process. I don't think all the gunk was actually out of his hair for a week. Owen had been telling us all week that the probes and wires were hurting him. We kept telling him that they didn't hurt, they just felt funny. Well, when they pulled everything off he had open, raw, oozing wounds. It seems that in addition to tape and plastic, Owen is allergic to the EEG adhesive. Unfortunately, frequent EEG's are pretty much unavoidable with Owen's disorder. Now, they are trying to not do any longer than 24 hours, he gets red from that, but only had a few open wounds. There are a few places where his hair has never grown back.
As soon as I got home I ordered the Charlie Foundation Starter Kit and This Book, and This Book. We started testing some of the recipes (we never gave full Ketogenic meals since that can be dangerous) and making small changes to Owen's favorite meals to bring them slowly, slowly closer to something acceptable on the Ketogenic Diet.
About 6 months later, Owen's seizures had started coming closer together again and we had him eating a greater variety of food, so we told the doctor we were ready to try the diet. Two months later, we entered the hospital again for our diet initiation. It's now been over a year since we've called an ambulance and over 7 months since his last seizure. His EEG in March still showed the abnormal brain waves, but no actual seizures! We made a few changes to medication and the diet and he goes in on Monday to see if we've managed normal brain activity yet. Wish us luck !