It's been quite a while since I updated this...a lot has been happening...some good, but mostly bad when it comes to the seizures...they just seem to be getting worse.
We aren't really sure what the deal is, but he was quickly doing better after we started then after he got pneumonia and antibiotics, he stopped getting better, seizures changed and he's having a consistent amount daily...sometimes he has more than normal So...normal is 4 tonics while on the diet...and zero atonic/drops or absence. Lately, he's been having tons of drop seizures during the day and absence and the tonic seizures last nearly 2 minutes long...with 45 seconds of not breathing followed by these whole body twitches for another 1:15 or more. Prior to the diet, we were having 50 or more types of seizures a day...we dropped to 4 and are now at around 20 or 25.
For the most part, Gio is attentive and happy and stumbling around - he can't walk straight and seems like a drunk on State Street. He loves the swimming pool we got at the start of summer and can bounce around in it as it comes up to his chest...he blows bubbles in it and holds his breath when he goes under...he just needs to learn to come back up...that's an issue.
Most recently, our ketogenic dietitian and the neurologist got very concerned with his weight gain. We thought it was normal since he's eating so much fat...but, because it's a controlled calorie diet, he shouldn't have gained 15 pounds in 7 months. We think he looks great, but the diet doesn't work that way...and he might not be creating the ketones that can stop the seizures despite being in ketosis...very strange really. Charlotte and I have noticed he isn't chewing all his food... swallowing some things whole, which could be the problem.
But, for us...we need some more help.
So, Charlotte worked her ass off, as always, and we are now heading to The Mayo Clinic in Rochester in a few weeks. While we are confident in the doctors here at UW...even they want us to go to Mayo...to see if anything else is happening that might have been missed.
You just have to do everything you possibly can...there's no other way.
