It seems I’ve slacked in the blog updating department! It may or may not have been due to becoming addicted to watching Lost on netflix in January. However, I’ve actually stopped watching it because it got all kind of ridiculous. Then once February hit, so did the winter blues, and I just didn’t feel like doing much of anything. But here we are in March! And here is an update that’s long overdue.
Emmett is still on the ketogenic diet. His seizures ended up getting worse again about a month ago. Especially the ones during the night while he was sleeping. I made some phone calls to his neurologist in Saint John and the dietician at the IWK. Since his ketones were where they needed to be in the evening (but still lower in the morning) I was under the impression we couldn’t increase the fat ratio in his diet because it would cause him to become ketotic. The neurologist didn’t want to give up on the diet just yet and recommended we bump the ratio up. He’s now at 3.5:1 ratio and the highest he can go is 4:1. His seizures started to get better again after about a week on the increased ratio!
But then he got sick.
I had been absolutely dreading this moment. It started with a fever and vomiting. He had no appetite and was having trouble keeping food down. Finally once his fever broke he seemed to be doing better but then cold symptoms started showing up. He had no appetite still and didn’t want anything to do with his meals. Luckily we have his ketocal formula that we can use as a meal replacement. He couldn’t drink the full amount so we would dilute it to make sure he’d get enough liquids. It ended up being the right fat ratio but just less calories. For a few days he didn’t even want the formula and wouldn’t open his mouth so we had to squirt it in with a medicine syringe. We don’t have the option of just letting him skip meals. We don’t even have the option of letting him sleep if it’s his meal time. I felt AWFUL having to wake him up to force formula down his throat while he was sick. I just wanted to let him sleep and give him popsicles. He got tons of cuddles, though.
Trying to get his meds down was difficult, too. He didn’t want to swallow the pills because I can only assume that his throat hurt, because mine did (yeah, I was really sick too. And so was Ryan). And if I crushed his pills up to put in his formula that just tasted awful and he wanted nothing to do with it. So again, I had to force it down his throat. His seizures didn’t increase too much mainly because he was able to keep the ketocal down. He did have a lot of smaller seizures (mainly the ones that affected his eyes), but not the longer more obvious ones.
After two stressful weeks of being sick he’s finally feeling better and starting to slowly eat his regular meals again. I’m SO glad we’re all on the mend. Hopefully I can start to get some sleep again, too. I’ve been so sleep deprived and wiped out. All I seem to be able to do is cough. I had to cancel a bunch of Emmett’s appointments, too. Time to get them all rescheduled and get our routine back in place.
Speaking of appointments, we have another big one coming up at the IWK in Halifax this month. Emmett is getting another MRI done. This time they’ll be injecting dye into him to see if there’s a collection of blood vessels on a certain area of his brain. The neurologist wants to see if maybe this could be leading to his seizures being so difficult to control and wants to rule it out. I have to call the neurology nurse to go over the procedure and make sure that the anesthetic and dye they use is ketogenic-friendly. He’ll also have to skip breakfast that morning since he can’t have a full tummy when they put him under. Last time he had an MRI he slept the entire day and night. It was really hard to get food into him so hopefully this time around he’ll come out of it sooner. After the MRI we’ll be meeting with the other neurologist there.
As far as things have been going with his development, things haven’t really changed too much. He’s still trying to re-learn how to get up on all fours. Sometimes he’ll do it on his own but usually we help him. It makes me so sad that he regressed a little after his diet started and because he had too much phenobarb in his system. He’s finally very shouty and sing-songy, though! He started chatting again in January. He has been playing around with making some new sounds, too. Every now and then we’ll hear a consonant slip in and then we repeat it like crazy to try and encourage him more. He doesn’t smile or laugh as much as he used to so hopefully that will come back soon, too. We met with a new speech therapist at his last PT appointment and she said that his speech is in sync with his gross motor development. So, we just need to be patient.
In regards to his vision, I’ve noticed that he doesn’t seem to want to attend visually as much anymore. We’re nervous it’s because of one of the medications he’s been on. The vigabatrin that he was put on for the infantile spasms can cause permanent peripheral vision loss. We really didn’t want to put him on that medication but the risks of infantile spasms not being under control were far worse. Right now we’re in the process of trying to wean him off keppra, and if that goes well, then we will try to wean him off the vigabatrin. I really, really hope we have some luck weaning him off a med or two. He’s currently on four and it would be such a great improvement. And hopefully the monstrous infantile spasms are over and done with.
Sorry for the long delay with the update. I honestly can’t believe we’re March already, eesh.
I’ll leave you with some photos from today.