Friday, August 24, 2012

Dravet Conference

Last week Gavin, Owen, and I attended the Dravet Conference in Minneapolis, MN. Before attending this conference, we both had a great deal of reluctance and fear...we were scared we would either waste our time and learn little to nothing and/or look like complete morons because everyone else was so much more knowledgeable than we were. Well, I will say that the latter occurred a time or two throughout those three days, but this experience beyond exceeded our expectations overall.

Now, some of you may have picked up on this fact about me...I am a bit of a list-maker. So I think the easiest way to inform those of you who care about what we learned is a list. So here goes.

Things We Learned at the Dravet Conference

1. Owen seems to have a mild form of Dravet Syndrome. After speaking with a number of parents and hearing many doctor's presentations, Owen is one of the ONLY kids we have ever heard of that has never had a 4,5,6,7, or even 8 HOUR long seizure that ended in an induced coma. Alot of these children are hospitalized as often as every month. Many of them have respiratory, heart, lung, immune, or many other issues. Owen hasn't even had a FEVER in the last year. We left this conference feeling very lucky to have such a healthy boy.

2. The almost 2-year-long debate between Owen's epileptologist and geneticist has been cleared up by a third party. And I will say, the geneticist has prevailed. Dravet Syndrome is often caused by a genetic mutation called SCN1A. Gavin and Owen both tested positive for this mutation; the epileptologist told us this is what is causing the DS. The geneticist disagreed, and another doctor at this conference confirmed she is correct. Owen is an extremely rare case. Even though he has the SCN1A gene mutation, the amino remained unchanged, telling us that this did not cause the DS. This almost never happens, but it happened to Owen.

3. As I said before, Owen seems to have a pretty mild form of DS. However, he is still pretty severely developmentally delayed. We learned at the conference that Owen might have a possible mitochondrial disease as well. We will continue this long road of genetic testing to see if we can pinpoint a possible reason as to why Owen seems to have additional issues other than DS. He was tested previously for a few major mitochondrial diseases; however, there are 1,000s, so we will continue the testing process.

4. Owen recently had a VNS surgery in June. Though we are seeing improvements in his mood (the kid is a ball of smiles and laughter), the seizures are not budging. We gained some trusted advice about the VNS settings, so we also have a game plan where that is concerned.

5. We gained a great deal of knowledge about medications and their compatibility with the various forms of seizures that Owen has. Owen's doctor gave us the ok to try a new med or two after we explore the new VNS setting. Sidenote: we were also introduced to medical cannibus (marijuana) as a possible future option for Owen. It is illegal in KS, unfortunately, but we are still keeping our options open and keeping up with this ever changing trend.

6. Many DS kiddos walk, talk, joke, laugh, anything other children do. Walking and talking is not completely off the radar for Owen. Most DS kids see an improvement in seizure control around the age of 6-9; hopefully Owen is coming out of the worst part and can start regaining skills again. This information was pure motivation for us! We have a newfound confidence in our jobs as parents and advocates for our sweet little boy.

Ok, I am sure I'm missing something, but my brain is still running in circles from last week. Though this conference was emotionally and mentally taxing, we met so many awesome people and gained some extremely useful knowledge. I will definitely go back in two years!

I will leave you with some pictures of the trip:

Mall of America entrance to Nickelodeon Universe

Owen acting too old and too cool for Blue :)

Wonder Pets!

We are the tiny dots in the doorway...this place is HUGE!

Owen with Dr. Dravet