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, run....do 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

Little DK Turns 2

Dex's 2nd birthday was last Friday. I know this sounds incredibly cliche, but I can't believe he's so old already. Gavin had to work on his birthday, so the day before we celebrated by going out fishing at a nearby pond. 

Definitely gets his fish fearlessness from his dad.

Owen soaking up the sun and enjoying the fishy view

This picture looks adorable and perfect, but this actual instant was surrounded by rock throwing,
 pole slamming, and everything but fishing with patience

Giving Oman some hand holding love on the way home

We had a little shin-dig at our house Friday night. Since Dex is completely into socializing with,...well, everyone, he had an awesome time. I didn't do the greatest at taking many shots throughout the party, but thanks to Kendi, I at least got some candle-blowing, gift-opening shots.

Still need a little more practice...

Most of the kiddos that helped Dex celebrate

Dex's new ride in his new Batman PJs...nice sexy pose buddy

Owen's Elvis smile....hey baby

Speaking of sexy poses, I can't help myself. For some reason, Dex has been "working it" for the camera lately. Here is a little taste of Double D's moves:

A little over the shoulder sweetness

Yep, still PG

Ummm....notice the thumb in the pants?

I cut him off after this one

HAPPY BIRTHDAY DEX!!!! 

So Far....Bummer

I have had a lot of people asking how Owen is doing since his chip was turned on last Monday (and thank you, by the way, for everyone's concern). I finally realized I hadn't blogged about it, so here I am. And the title pretty much sums it up. So far, we have actually seen harder more frequent seizures since the chip has been turned on. I guess this possibility never crossed our minds, we were merely hoping for a slight improvement or at the least for the seizures to stay the same. We weren't expecting any real change yet; the medical professionals have been telling us that it will take months, possibly even over a year for the chip to show its true colors. But for his seizures to be worse is very disheartening. Owen had a pretty rough day yesterday; usually having about 2 hard seizures a day, he had about 6 or 7. We go back to KC this Friday already to bump him up another notch; hopefully the sooner we get this chip to where it needs to be the better.

I did ask the dr. about why he didn't have a seizure the four days after surgery. My theory proved to be correct; the anesthesia he was given is actually in the same family as the medication he takes that has been so successful. He still had small amounts of the anesthesia in his system, which is why he was doing so well. Which brings me to my next thought....now WHY can't we give him this anesthesia medication every day again????!!! I will continue to post updates after Owen's VNS adjustments....hopefully we will see some improvement next time!

Completely Baffled

Owen, Dex, and I drove home on Monday afternoon, right after Owen was released from the hospital. Owen did an amazing job; no crying, no whimpering...he was actually kicking excitedly post surgery. As a matter of fact, Owen is still doing unbelievably well. Here is a list of the improvements that I've seen already:
1. GAVIN AND I HAVE NOT WITNESSED A SINGLE SEIZURE SINCE SUNDAY (pre-surgery). This is unheard of; Owen usually has AT LEAST two every single day, if not ten.
2. Owen's eye contact has improved dramatically; it doesn't come and go. He has so much more passion in his eyes. He already tracks so much better as well.
3. His mood is awesome. He seems happy, comfortable, and "with it" all of the time.
4. Owen's sitting has taken a drastic turn for the better. He has on multiple occasions sat for almost an entire episode on NickJr. Before, he would barely sit for a few minutes on a good day. He is no longer throwing his head back like he used to pre-surgery....at least so far he's not.
5. He hasn't been taking naps. This is, I guess, a good sign, considering the seizures make him tired. No naps must equal fewer seizures, right?
So here's the weird irony of it all....the chip hasn't even been turned on yet. Yeah. That's the same old Owen in there, but for some reason, he's taken this leap of improvement without a working chip inside of him. I don't get it. Gavin and I have a couple of theories for this change. One, we think these improvements might be attributed to the liquid diet we've been giving him the last couple days. There is no doubt that Owen has most of his seizures during mealtime; maybe the lack of stress from swallowing chunky foods is helping? The table foods might also have some ingredient in them that cause a seizure to happen as well. The other theory we have is that the pain medication he's on might have something to do with the decrease in seizure activity. So far....we don't care what it is, we are just going to continue what we are doing, and hopefully this good streak will keep on coming!

Thank you to everyone for the kind words and support. I was a little more anxious--and nauseous--about this surgery than I thought I would be, but now that it's over, I am excited to see what the next few months bring for Owen!

Upcoming Surgery

Owen is having his VNS surgery this coming MONDAY! It was originally scheduled for June 18th; however, a nurse from the ENT clinic called today and asked if we wanted to fill a cancellation on June 4th....which is a short 4 days away. We are excited to get this procedure over with and see what this thing can really do for Owen. The surgery, so we are told, is an outpatient surgery. Complications are not expected and Owen should either be dismissed that same evening or the next morning. The surgeon will make a small incision in both his chest area and his neck. The chip (about the size of a quarter) will be placed in Owen's chest cavity. A cord will connect the chip to a nerve in the neck. This cord will send pulses to his entire brain and will hopefully stop a seizure before it begins. The chip is controlled by a computer, and it will not be turned on until his body heals. Owen already has an appointment June 15th to turn on the chip. He will be seen by his epileptologist probably every 2 weeks or so for a few months to adjust the pulse rate to make it compatible with the frequency and severity of his seizures. We are crossing our fingers and praying this does at least SOME good! I will update on Owen's condition post surgery.

Whistle While you Bathe and Upcoming Events

Owen found Gavin's whistling extremely comical tonight....so funny he got the hiccups.

While we're at it, I'll post a little update. Owen has two major events coming up in his life. The first will be a surgery, probably in June. He is getting a VNS chip placed in his chest cavity. This is a one-day surgery and will hopefully decrease (not eliminate) the frequency of seizures. He has a consultation on May 21st with the doctor who will administer the surgery, and at that time we will schedule the surgery for probably 2-3 weeks after that. Let's hope this works even just a little!

The second event that Owen has coming up is a vacation! Gavin, Owen, and I are attending the biennial Dravet Conference in Minneapolis, MN this August. The keynote speaker is Dr. Charlotte Dravet (yes, the namesake of Dravet Spectrum Disorder herself). We will leave on a Wednesday, drop Dex off with Aunt Rachel in Kansas City, and spend the next three days listening to speakers, sharing information with other affected families, and entertaining Owen with a lot of activities geared toward his level. Hopefully we will not only gain knowledge on the disorder but also come back with a plan of action on what to do to get Owen living the best possible life. Sidenote: the conference is held (so I'm told) very close to the Mall of America. Just sayin'.

Until next time....

Spring Break Getaway

The boys and I took a mini-vaca over spring break to KC to stay with Rachel, Kevin, Max, and Kendall. This was the VERY first time (that I can remember anyways) that we have gone for really no reason other than just to get out of the house for a few days...in other words, we didn't go for a Children's Mercy appointment of Owen's. The highlight of the stay was taking the kids to Disney on Ice at the Sprint Center. Gavin and I were a little apprehensive about me taking Dex to a "sit down and hold still for 2 hours" type of activity. Boy, were we surprised. He LOVED that show; he was engaged the entire time, which is nothing short of a miracle coming from that kid. Here are some pictures of the week:

Intense stuff

The whole crew at intermission

Who would give a 1 year old an over-sized, sugar-candy coated, messy marshmallow you ask?
Aunt Rachel, that's who...without permission I might add.

Gross

The finale

The trip ended with a visit to Paradise Park. Wow, what a place for small children. Ball pit, cooking classes, water play, face painting, playgrounds, arcade...you name it. And even though Dex threw an absolute, full-out temper tantrum after we left every separate part of the park, I think the kids had a good time.

Is it just me, or is Dex sporting a side pony?

I took one for the team and crawled my wide load into the kids ball pit (aka germ fest) so Owen could partake; he kept grabbing the balls and putting them in his mouth. DISGUSTING.

Big mouth

Dex's favorite station, also the messiest

Animal lover

Yeehah cowboy

 What a great (and exhausting) trip!