Neurologist

Saw Dr. F today. Love him. He really didn't freak about Jerry having stopped all of his meds like I thought he would. Instead, he asked how he's been doing off of them. I told him that he had gold days every day last week, and that other than not sleeping great, he's been no worse behaviorally. Different, but not worse.

The sleeping has been weird though. He is just not tired and sitting up in bed playing until 11:30 or midnight. He wakes up several times in the night and then still gets up around 7:30-8 am. The difference from before is that the lack of and interrupted sleep does not seem to be affecting his mood or behavior during the next day. He acts like he had a normal night's sleep. So, not complaining.

Jerry's diastolic pressure was still low today, but his heart rate was 78. He encouraged us to keep pushing the salt as much as Jerry could tolerate it. Also said to sneak vitamins in too if we could. Thankfully, I have that odorless and tasteless supplement and probiotic for kids I got a while back to sprinkle on what he does eat. Dr. F also gave me a prescription for Ensure chocolate pudding since Jerry refuses to drink actual Ensure of any kind. We'll see about that too I guess.

The Atenolol for Jerry's BP made him moody and sleepy. The Midrodrine the cardiologist replaced it with, according to Dr. F, carries side effects of upsetting the stomach. Could explain for some of the loss of appetite and weight for Jerry, but he stopped taking all of his medications over a week ago now.

Monday Jerry goes for an EEG. By then, all traces of his Depakote for the seizures will be out of his system. If the EEG is clear, we will monitor him off the medications. If it comes back showing seizure activity, Dr. F will start him on Phenobarbital once a day, which he says will help with his sleep. Reading its other side effects though, I am not thrilled...nausea, headache, irritability, aggression, problems with memory or concentration, and a "hangover" effect. Lord, we don't need any of those!! The other option we discussed is medical marijuana, which he currently has several other patients on successfully. It will help control the seizures as well as increase his appetite. Sounds like a winner to me.

​In the meantime, the GI doctor called to say that his blood enzymes were slightly elevated and his stool sample showed inflammation in his lower intestine. Crazy that you can tell that just by examining poop! Anyway, there is another stool sample test they want to run and they said they will collect the stool from him when he goes in for his follow-up this Wednesday. I didn't ask how they planned on collecting it since Jerry doesn't poop on command, but not gonna worry about it until then.

​I'll update later in the week!