No News is Good News

 

I got to spend a little time with Damonito on Sunday, he's doing really well. Compared to last year at this time, he's fantastic. 

Damonito has been using Klonopin as a rescue drug since the onset of this epilepsy. Klonopin is used for a number of issues but it was developed as an anti-seizure medication and it works well. However, it has a number of undesirable side effects so long term use is not recommended (although it is used long term for many because it works). 

The point of a rescue drug is just that, for rescue and unfortunately since last June Damonito has been taking Klonopin daily. Damonito needs a reliable rescue drug so when all else fails and he is having uncontrollable seizures, he has something that will bring him out of it. The surgery was intended to ease his seizures so he could be taken off the regular dose of Klonopin and bring it back only when he needs a rescue.

It's a slow process but it's working. He's better than he has been in awhile.

Happy New Year

With a new year there is always new hope, Damonito is doing ok. He's still having grand mals but he is way better in January of 2016 than he was in January of 2015. He has a seizure disorder and that's not going away but he's better and we'll take what we can get. 

 

He's up and moving around a lot more. He's still not very steady and too much activity can mean a difficult night with seizures but it's hard to keep him down. He repeats movement like someone with obsessive compulsive behaviors. According to the Epilepsy Foundation website, "OCD is uncommon (some would say rare) in people with epilepsy, but there does seem to be a connection. OCD is seen most often in those with complex partial seizures originating in the temporal or frontal lobe, or seizures originating in the anterior cingulate gyrus, near the corpus callosum." 

Damonito has generalized seizures which means his seizures happen in the entire brain. I'm not sure how that fits into the OCD model but observing Damonito for just a few minutes, you would realize he has obsessive compulsive disorder. Or some version of it. 

For now, he's ok. We're looking forward to the new year. 

Keep the Champagne on Ice

I realized something this year that I hadn't thought of before and that is when times are tough, you know what to expect so you are always guarded and when times are good, you are always guarded because you are looking for the things that are familiar. You never get a break. Such is the case for kids with Dravet Syndrome and their families.

Damonito's surgery this summer saved his life. I have no doubt that if he hadn't had the corpus callosotomy he would have spiraled downward and ended up in status. There's a good chance he would not be with us right now. His recovery was hard but he came through it and has been doing much, much better. He seems to be learning, he's more engaged, there has been talk of reducing his medication, and maybe, just maybe everyone could relax.

Except you can never relax when you have a child with Dravet. The full blown grand mals have returned. We will have to do Christmas presents a couple at a time over a period of days. His recovery drugs are being amped up to keep him out of the hospital. The Nevada Santa brought him Elmo slippers. He also got some books. He's good at turning pages and he loves to look at letters and numbers. It's easy to get ahead of yourself when things are going well. For now, we're back to focusing on today.

Routine Post-Surgery Testing

Damonito is spending a few days at Phoenix Children's Hospital having a video EEG. This is a routine test for him, they want to see what is happening in his brain since the surgery this summer. From our perspective, he's doing very well. He has come back from the surgery better than ever, so much so there is discussion about lowering his phenobarbital dose and if that goes well, they will eventually ween him off phenobarb all together. It's a goal.

I would venture to guess that most of what we are seeing on the monitor is pretty normal brain activity. The doctors can tell us more but it almost doesn't matter because we are seeing such a marked improvement since the surgery that it brings us all so much hope. It's such a relief.

One and It's Done

 

Damonito's seizures are tremendously better since the surgery this summer. Nicole described them as "one and it's done" with the one lasting 30 seconds or so. This is great news since before the surgery he was having clusters of seizures that were sending him into status and only subsiding after mega doses of anti-seizure medicine had been administered. 

 

His memory seems to have returned to where he was before the surgery. Such a relief after so much worry about what he would retain. He even seems to have picked up some new things, too.

 

Yesterday hanging out, we were watching Elmo's World. When the door would show up in Elmo's World, Damonito would knock on the door on the front of the TV.

He's definitely doing a lot better.

Special Thanks!!!

THANK YOU to my amazing niece, Megan, for coordinating a donation effort to raise money for the Dravet Syndrome Foundation! You ROCK! And THANK YOU to the fantastic staff at Monfort Heights Elementary in Cincinnati, Ohio for donating $5 each to wear jeans last Friday. What a kind and generous thing to do! You guys are THE BEST!

Success

I feel I can say with some confidence that Damonito's corpus callosotomy was successful. The purpose of the surgery was to reduce the number of seizures and lessen the severity of the ones he does have. We can call it a success because both of those things have happened.
He's not by any means seizure free.

Damonito is still not able to go to school. Just too risky right now. If he gets over-heated or over-stimulated he'll have a seizure. He's happy hanging out at home watching Elmo. The other thing is he's still pretty wobbly when he stands and someone has to be with him all the time.
When I was over the other day, he was watching Elmo and some elephants came on the screen and he turned and said, "elllllll!" It seemed clear he was trying to say "elephant." It's exciting to think he has a new word. He's doing great with words, we weren't sure what he'd remember after his surgery but he seems to have retained more than we anticipated. He definitely remembers that Elmo is his buddy.