We had a great trip to Phoenix today to visit the neurologist and dietitian at the Keto Clinic. The Keto Clinic is a chunk of appointments set aside for all the kiddos on the Ketogenic Diet.
The funniest part of the whole appointment is that I left Manny and the kids in the waiting room while I went to the bathroom. When I came back I walked into the wrong waiting room and guess who was there...the girl from church, Gen, and her Cici look-alike! As soon as I walked in, she looked up and I pointed to her and squealed out something like, "Hey! It's you! I know you!" She squealed back so it was all good. I'm sure the neurologist really appreciated the interruption. But when the dietitian finally came to meet with us, Gen, her husband, and Cici Look-alike followed into our waiting room to say hi! We said hello, introduced our husbands, and Gen said hello to the kids. We found out that every time there was Keto Clinic we would be seeing each other. And we're long overdue for a playdate anyway!
Back to our appointment...we met with the neurologist and reviewed Christian's current status and progress. I mentioned to her some new developments and the hard time we went through in December. She's really nice and gets right to the point about things and plans of action. She's really there for consulting as part of a team but she's careful not to step on our current neurologist's grumpy toes. For good reason, I mean, they're kind of colleagues in that they all know each other. But I'm feeling like I might want to switch! The neuro today mentioned that Christian looked really good and looked like he was doing great. And when I thought about it, our current neuro has never once said anything about Christian looking good, doing well, or anything really positive for that matter. It's not like he goes around saying negative things. Frankly, I think he's a little afraid to say anything to me outside the bounds of names and doses of medications because I've been so assertive with him. But it was nice to hear someone neuro-minded say how good Christian looked. Hmmm...I'm thinking it might be time for a change.
Anyway, after we were done meeting with the neuro, the dietitian came in. The neuro deals with the brain, the dietitian deals with this diet. I know, so obvious. But really our main contact with this diet stuff is the dietitian. And she's really helpful and accessible.
We went over a lot of stuff. And there are a lot of little changes to come. First, I mentioned that I started seeing some changes as far as his progress and development and seizures when I added 1200mg of fish oil again and this was two weeks ago. I was thinking that maybe it's not just the fact that fish oil may be beneficial to the brain, but also simply because it's an oil and an oil is a fat, which may increase the ratio of the diet. So heading in that direction, we've decided to increase the ratio. He was at a 3:5:1 ratio and now we're aiming for the strongest ratio 4:1. So we're adding more fat and lessening the protein. We'll see if this little change does anything as far as seizures go.
Christian's sucking and swallowing are still as strong as ever so now that we've got the diet down. The dietitian is going to come up with some recipes for tasting and eating by mouth. This also throws off the ratio, so we have to account for anything taken by mouth.
We've been weaning off of Sabril (Vigabatrin) and I've definitely seen the benefits of this. It's like the lights come on when the drugs start to go away. We discussed maybe adding a little Lamictal after the Sabril wean but we're just going to stick with the full Sabril wean for now and then assess the situation. Especially since we're thinking of trying out Amantadine, which I will dive into in another post on another day. Basically it's a brain stimulant and it's on our radar. Again...for another post. And we can finally visit this subject seeing as how we have gained some control over things.
As for Lamictal, I'm not opposed to additional seizure medications. I've always said that I'm not anti-medication. I'm anti-medication that doesn't work! But I'm not against trying. I still want to see Christian off of medication and make the determination at that time.
Another thing we talked about was doubling the calcium supplement. Because Christian has had some bone issues as well as some tests that came back funky (we're retesting just to make sure it wasn't lab error), we're giving high doses of calcium and probably Vitamin D to follow.
And last but not least, the dietitian was able to give us some emergency formula. Yeah, it's so much fun when your specialized formula for your kid's specialized diet is on back order. But I'm an old pro at this back order crap by now. No use yelling at the feeding company. It is what it is. We just had to make a few changes, none of which involve starving my son.
So, yes, it was a great appointment. My questions were answered and I felt like it was a real team supporting us and our goals for Christian. Nobody second guessed me or yelled at me for not keeping seizure calendars. Nobody ever has yelled at me for that but you never know. We have a plan of a few little changes that are manageable.
We'll see you in April, Keto Clinic!
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