Finally back to post that promised update on Drake's neurology appointment.
While the news we received wasn't fantastic, it was a pretty good appointment. It was the first appt that I've really felt heard and a part of the decision making process for Drake's treatment. So that part is great!
The doc said he's a bit concerned about some of Drake's quirks and about his speech. The concern is that it could be pointing to something on the autism spectrum. Specifically he mentioned Asperger's Syndrome. However, he also said that 3 or 4 years from now we could see a perfectly typical child and wonder what we were ever concerned about. Here's hoping!
The results from the Dravet Syndrome testing were not in yet, but we expect to get those results in the next couple of weeks. If it is Dravet, that could also be the cause of many of the autistic traits we are seeing.
Since we are still seeing break-through seizures, we have a new med plan. We're weaning off Topomax - this will take about 6 weeks if all goes well - slower if we see an increase in seizures, something that frequently happens when weaning off seizure meds. We've bumped up the Depakote and are holding steady on Keppra. If we're still seeing seizures after the Topomax wean and taking Depakote up to maximum levels, then we will take a serious look at trying the Ketogenic Diet. I'm very intimidated by the diet. It requires a lot of planning, time (for food prep), and you have to be VERY meticulous about how much food is being consumed (they MUST eat everything on the meal plan - this could be a real challenge with a picky toddler who frequently throws his food on the floor!). But, we'll try to figure out how to make it work if there's a chance it will be the answer. There's about a 33% chance of the diet eliminating the seizures - those odds are far greater than any additional meds we could try. Oh, and before doing the diet, we would also do another video EEG to confirm that what we've been seeing are truly seizures. Since the seizures he's currently having are not convulsive seizures, it can be very difficult to be sure they are indeed seizures. He did take a look at a few of our video clips however and seemed to concur that they are indeed seizures. He called them atypical absence seizures and I was thinking they were complex partial seizures. I didn't think to ask him to clarify this point...any seizure experts out there able to explain what the difference really is? I'm pretty sure complex partials usually have a specific origin in the brain while absence seizures are generalized throughout the brain. But how can you tell the difference when witnessing them? Drake's seizures often last more than 30 seconds, sometimes these last for an hour or more. I've never seen any documents stating atypical absence seizures last longer than a few seconds, so I'm very confused.
So anyway, that's where we're at. We have a new plan and it's once DC and I both feel comfortable with. It's the first time since the epilepsy diagnosis that we've had that feeling. Perhaps that's partly just because the whole thing is becoming so "normal" to us now.
On a lighter note, we got to visit 4 Paws yesterday! Nine Geek Squad employees volunteered at 4 Paws, working on getting all their computers functioning well enough to get them on-line. The boys and I thought it was a great excuse for us to go down and visit with the doggies. :) The GS group spent over 4 hours working on their computers (a few were there for over 6 hours!). A local Best Buy store even generously donated some equipment needed to improve 4 Paws' network. And not only did 4 Paws get all this work donated to this great group of folks, but they'll also receive $1,000 donation in honor of Drake from Best Buy! Such a great program. There are additional "events" planned - but for most of these, the GS agents will log into the 4 Paws network remotely to continue the work they started on their computers. DC will drive back down to Xenia for each of these to help facilitate the work (sometimes local operators need to press a few keys or tell the remote agents what's happening with the computer). Each time the guys/gals do one of these "events," Best Buy will donate an additional $1,000!
Sadly my camera battery died after taking only one or two pictures. But I'm working on getting pics from a couple of the other people that were there taking them. As soon as I do, I'll post them to the blog and on our Facebook page.
Tomorrow is our lunch benefit at Grace Lutheran Church in Elmore Ohio. Be sure to stop out and say hello if you're in the area!
While the news we received wasn't fantastic, it was a pretty good appointment. It was the first appt that I've really felt heard and a part of the decision making process for Drake's treatment. So that part is great!
The doc said he's a bit concerned about some of Drake's quirks and about his speech. The concern is that it could be pointing to something on the autism spectrum. Specifically he mentioned Asperger's Syndrome. However, he also said that 3 or 4 years from now we could see a perfectly typical child and wonder what we were ever concerned about. Here's hoping!
The results from the Dravet Syndrome testing were not in yet, but we expect to get those results in the next couple of weeks. If it is Dravet, that could also be the cause of many of the autistic traits we are seeing.
Since we are still seeing break-through seizures, we have a new med plan. We're weaning off Topomax - this will take about 6 weeks if all goes well - slower if we see an increase in seizures, something that frequently happens when weaning off seizure meds. We've bumped up the Depakote and are holding steady on Keppra. If we're still seeing seizures after the Topomax wean and taking Depakote up to maximum levels, then we will take a serious look at trying the Ketogenic Diet. I'm very intimidated by the diet. It requires a lot of planning, time (for food prep), and you have to be VERY meticulous about how much food is being consumed (they MUST eat everything on the meal plan - this could be a real challenge with a picky toddler who frequently throws his food on the floor!). But, we'll try to figure out how to make it work if there's a chance it will be the answer. There's about a 33% chance of the diet eliminating the seizures - those odds are far greater than any additional meds we could try. Oh, and before doing the diet, we would also do another video EEG to confirm that what we've been seeing are truly seizures. Since the seizures he's currently having are not convulsive seizures, it can be very difficult to be sure they are indeed seizures. He did take a look at a few of our video clips however and seemed to concur that they are indeed seizures. He called them atypical absence seizures and I was thinking they were complex partial seizures. I didn't think to ask him to clarify this point...any seizure experts out there able to explain what the difference really is? I'm pretty sure complex partials usually have a specific origin in the brain while absence seizures are generalized throughout the brain. But how can you tell the difference when witnessing them? Drake's seizures often last more than 30 seconds, sometimes these last for an hour or more. I've never seen any documents stating atypical absence seizures last longer than a few seconds, so I'm very confused.
So anyway, that's where we're at. We have a new plan and it's once DC and I both feel comfortable with. It's the first time since the epilepsy diagnosis that we've had that feeling. Perhaps that's partly just because the whole thing is becoming so "normal" to us now.
On a lighter note, we got to visit 4 Paws yesterday! Nine Geek Squad employees volunteered at 4 Paws, working on getting all their computers functioning well enough to get them on-line. The boys and I thought it was a great excuse for us to go down and visit with the doggies. :) The GS group spent over 4 hours working on their computers (a few were there for over 6 hours!). A local Best Buy store even generously donated some equipment needed to improve 4 Paws' network. And not only did 4 Paws get all this work donated to this great group of folks, but they'll also receive $1,000 donation in honor of Drake from Best Buy! Such a great program. There are additional "events" planned - but for most of these, the GS agents will log into the 4 Paws network remotely to continue the work they started on their computers. DC will drive back down to Xenia for each of these to help facilitate the work (sometimes local operators need to press a few keys or tell the remote agents what's happening with the computer). Each time the guys/gals do one of these "events," Best Buy will donate an additional $1,000!
Sadly my camera battery died after taking only one or two pictures. But I'm working on getting pics from a couple of the other people that were there taking them. As soon as I do, I'll post them to the blog and on our Facebook page.
Tomorrow is our lunch benefit at Grace Lutheran Church in Elmore Ohio. Be sure to stop out and say hello if you're in the area!