10.26.17 Acid Reflux and First Primary Children's Appt

We are officially 2 weeks Keppra-free with no seizures! This is the longest seizure-free streak we've had since they started in July and we're thrilled! I'm finding myself enjoying Bennett and enjoying the little moments every day without waiting with bated breath for his next seizure a lot more frequently and it has been SO nice. I feel overall more relaxed and hopeful than I have in a few months and it has been much needed.

Yesterday we saw Dr. Van Orme at Primary Children's hospital yesterday morning because they had a last minute opening (we weren't supposed to get in for another 4 months...). Van Orme was pretty old, but he was kind and patient. I think the appt. was almost 2 hours with him answering all my questions about medications and treatment plans. I told him I wanted to get Bennett off all AED's as soon as possible, and maybe CBD was the answer to that, but he was not a fan of that plan. He was pretty adamant that phenobarbital can be perfectly safe and he has plenty of patients on it with no cognitive impairment or delays. This flies in the face of about 90% of people's experiences I've heard and read about with their kids on phenobarbital. He offered up a couple different drugs we could try instead if I feel uncomfortable with it, but didn't seem too keen on the plan. He did order a nocturnal EEG for us, which I wanted because in the last week I've noticed Bennett having seizure-like activity at night where he wakes up around 2 am and convulses and then screams until he finally passes out an hour later.

We also went to see Dr. Morita yesterday because we had our follow-up scheduled with her a month ago and I decided to just keep both appointments to get a second opinion. She agreed about trying the nocturnal EEG and suggested an ambulatory one if the first EEG doesn't capture anything. That would be 3-4 days of Bennett being hooked up at home to the equipment, but I'm trying to avoid it because it sounds miserable to me, haha. But it can give us more data to work with, which would be worth it. She was clearer on which medication she recommended and agreed that Phenobarbital is a drug we want to get off ASAP because it DOES cause developmental delays. We decided to switch to Zonegran, but first we'll get the EEG and then slowly ramp up the Zonegran to therapeutic levels and then wean off the Pheno. I was happier with our appt. with Morita, and I think we'll continue to work with her. She seems to be a little more up on the current research, and is supportive of CBD as an option for Bennett.

The other notable developments this week are brought to you by Ranitidine. Ranitidine is the generic for Zantac and Bennett's been on it since he was about 4 months old because he's had pretty bad reflux. Now, Dave has never been convinced that he actually has reflux, and last month he convinced me to take Bennett off the Ranitidine to see if it really was making a difference. After about a month and a half of AWFUL sleep (not that he's ever really had great sleep, but this was worse than normal), we finally put him back on it a few days ago and Oh. My. Gosh. I will never forgive Dave, haha. Bennett's a totally different kid again! He was SO irritable and screaming in pain almost the entire day this last week and now he's content, plays by himself, sleeps longer than 2 hour stretches at night, and doesn't seem to be in pain! Needless to say, we are going to stay on the Ranitidine a little while longer.

The last few days have been awesome with him being so content and sleeping well, we're crossing our fingers he stays like this and remains seizure-free!!

Also, he CLAPPED!!!!!!!