James went to see the neurologist on Thursday to check in to see how everything is going. Because James is still having frequent seizures/spasms, and the fact that James has lost so much weight, the neuro thinks we should take James off the ketogenic diet. Another failed treatment to get…
As many of you know, James has been dealing with infantile spasms and seizures for almost two years now. Since James is non-verbal, we have no idea how he feels about them, but Stacy thinks that if he was able to tells us, he would say something like this: “I…
James went to see the neurologist overseeing his keto diet (aka “keto doc”) today for a check in and weight check on Tuesday. He is down three pounds since he started the diet. He started at 26 pounds; he is just a smidge over 23 pounds now. The keto doc…
James had a minor illness on the 31st, with a little bit of a fever, and some yellow “gunk” as Stacy calls it coming out of his nose. We gave him some Tylenol, kept up with the suctioning, and kept an eye on the fever. The next morning when he…
Last week at James’ neurology appointment, the doc made a couple of med changes, one of which was to take James off of one of the seizure meds this week. Tuesday was his last day of that med, but his spasms are still crazy. They happen so quickly that we…
James had a longer neurology appointment on Tuesday. Normally the appointments are just checkups to see how things are going and possible med changes. This time the neuro wanted James to have an EEG first so he could see if there are any changes since his last EEG. The good…
Today Stacy started to see James have some pretty intense spasms. The way she described it is that he would have a full spasm, which was followed by several twitches and some loud cries. She’s not sure if the cries were because he was in pain, or if he’s scared.…