Dr. Seeley, Owen's New Neuro

I took Owen on a one-day, whirlwind trip to KC. We were there for a whopping four hours. We met Dr. Seeley, Owen's new neurologist. I wasn't expecting much from the appointment, other than sharing Owen's medical history with him and discussing a game plan for the next few months. I got a really good vibe from him. He listened to me and respected my opinion. He is open to the possibility of trying medical cannabis in the future. We, together, decided to try topamax for a second time to try to help decrease Owen's seizure activity. Since Owen has tried every possible pharmaceutical medication he would prescribe, we concluded that trying one we haven't tried since Owen was two years old might be an appropriate next step.

So far, the topamax is not working well. However, I need to give it a couple weeks. It seems to be making him extremely constipated again, and his seizure activity is elevated. It's difficult to be patient with these medications!

The End of Dr. A

Owen had his last appointment with the neurologist he has been seeing since he was two. We will call him Dr. A.😉 This has been a long time coming. He didn't treat Owen like an individual, let alone an individual he cared about. Every appointment was like starting over again; he could never remember what we discussed. He was also extremely arrogant; he once told Gavin and I that he was number one in ketogenic diet research and this doctor we were seeing at Johns Hopkins was number two (WHAT?!) Lastly (among many other problems I won't get into), he didn't value my opinion as Owen's mother. I see him every day and have that thing called "mother's intuition," but my comments went in one ear and out the other with that guy.

So, during Owen's last appointment with Dr. A, he introduced two options for Owen to try. He informed us that these are end of the road medications and are not what we would initially try; however, since we are getting a little desperate, these are our two options. Option #1: felbamate--Owen would have to get his liver and blood checked every other week because this medication is so potent it could kill him. Option #2: can't remember the name, but it was almost certainly going to cause him to lose his peripheral vision permanently. Yep, those were our options. I know, horrible. We opted for choice #1, reluctantly.

It was awful. Owen was on felbamate for a week and a half. His seizures went crazy, he was out of it, he began running a fever. I was freaking out for lack of a better phrase. I took him to get his liver and blood checked; luckily, those results were normal. Needless to say, felbamate is not Owen's "drug of choice."

New Year, New Doctor

It's been awhile since I've posted an update about Owen. He actually did pretty well this summer. He stayed healthy, and fortunately the weather for the most part stayed comfortable enough for him to enjoy outdoor activities.

I have been searching for a new neurologist for Owen for quite some time. We feel it's in Owen's best interest to move on from the dr. he has been seeing since he was two; to sum it up, we feel as if Owen was treated like a number and most importantly, his seizures aren't even remotely controlled at the present time. At our last appointment with this doctor, he mentioned that since we are getting down to the "end of the road as far as seizure treatments," we have two riskier medication options. The first option involves liver and blood checks every other week because liver failure and death are possibilities. The second option "offers" an almost certain, eventual, permanent loss of peripheral vision. Though this was a seemingly impossible choice to make, we opted to try the first option, felbatol. Well, this trial lasted a little less than two weeks. We couldn't do it. Owen was acting off, the seizures went nowhere and he soon after got a fever. We weaned him off and never looked back. We did take him in for the liver and blood check; the results were all normal, phew!

Owen is seeing a new doctor next week, Dr. Seeley from Menorah Medical Center in Overland Park. I have my list of questions ready and am hoping this doctor can get somewhere with this seizures.

Currently, Owen is only taking two medications for his epilepsy (he was taking four, and a total of 12 pills a day). I feel we are at a crossroads; we are forced to choose from two horrible options....having our happy Owen here with us but seeing more seizures, or seeing a lethargic, half here Owen with a few less seizures a day. We are, for now, choosing to see our happy, wide-eyed, sweet, awake Owen. 

Switching gears, while Owen and I went to his doctor about a month ago, we got to catch a Royals game with the Clark's. Owen and I sat right above the KC bullpen. There were people always passing by, yelling at the players to throw them a ball....some were just straight up begging. I was halfway paying attention to the game while talking to another mom about seizures, and Coach Eiland points Owen and I out. He threw a ball up just for Owen. Out of all the little boys beside us, screaming for a ball, he picked Owen. It was a pretty cool, definitely memorable moment.

Blake is One!

Hidden amongst all of the crap that Blake has had to endure in this last month was a reason to celebrate....our little stinker turned the numero uno. This kid is awesome (I know I should say this because I'm his mom, but he really is). He seems to bring joy to everyone around him, (most of the time) has a smile on his face, and just has the sweetest, funniest demeanor. Since I am neither tech saavy nor do I have the time or motivation to figure out how to make a nice, neat pic collage, here are more than a few pictures of my big boy and his big day.

 

Nose picking time out

Owen is getting so big! Standing with his braces on
with his cousins Max (8) and Kendall (5)

 

Peppa Pig birthday cake....Blake is obsessed with this show

Post-silly-string-war picture

Looking better in Uncle Phil's shades than Uncle Phil does

Peppa Max

Big boy, big cake

Screw you diabetes!

Random head lock from Dex

Presents!

Stud.

Thank you to Janet Gray for the AWESOME birthday cake, and
Aunt Rachel for the AWESOME pictures of Blake's big day!!!!
 

Royals Game

 

After a wait of about 6--maybe more, I don't exactly remember--years, we FINALLY got to go to a Royals game.  Gavin and I are huge fans. We watch pretty much every game, sometimes 6 nights a week, so this was a pretty big deal. These players are like (ironically) royalty to us. The weather was beautiful, we spent the day with family from both sides, and we had the time of our life! Now if we could just go back....

 

 

 

Owen did great at the game!

Silly kids

Gavin's sister Brooke and her husband Brian came with us!

We went on a Sunday Funday so the kids could run around the bases after the game.
Gavin ran Owen around, and they had a blast! The staff was so accommodating and nice.
Gavin and Owen used a special elevator that took them right past Ned Yost, Alcides
Escobar, and Mike Moustakas. I was so jealous!

The Little K....Dex whiffed and had NO idea how to run
around the bases. Needless to say we've been practicing ever
since.

Good eye contact....there's hope.

Running around the bases...the Royals staff takes pictures by third base
that you are allowed to purchase and view online....we looked at them online...
yeah, I don't think I want to purchase a picture of Dex's arm. He TOTALLY
missed third base.

WHAT A GREAT WEEKEND! :)

Owen's New Wheels and New Med

Check out this beautiful piece of machinery! In just a few short weeks (5-7 so they tell me), Owen will be cruising around Odin on this hot rod. And the best (well, maybe one of the best) part? It was FREE! All around 2,000 odd dollars of this beauty...FREE. We are super excited to get this package in the mail!
Let's talk numbers here. There were a total of 1,370 participants. There were 6 maybe 7 different bike contests, according to the kind of bike you chose for that particular child. In Owen's specific contest, for the Rifton bike, I didn't count up the exact number, but there ended up being around 140-150 participants. Because of generous donors, they were able to give away 18 Rifton bikes. Don't quote me on this, but I am pretty sure Owen won the 18th bike. No joke. The list of winners wasn't in alphabetical order, and Owen was the VERY LAST KID LISTED. Phew!!!! All in all, they gave away 108 bikes out of 1,370 participants, and Owen was one of them!
Gavin and I would like to give a HUGE thank you to Billie, Owen's case manager. She sent me the link to the contest, therefore, ultimately making this happen for us. Billie, you are AWESOME! :)
Also thank you to all of you Warriors who do ANYTHING for Owen just to see a smile on that kid's face....or just to make him feel better even for a little while. Thank you for voting, for sharing, and doing the previously mentioned actions over and over again.:) Owen is spoiled rotten, but deservedly so!!! It's been a happy week in this household, and not just because of the bike........

We have, in the past two weeks or so, started Owen on a new supplement called Holy Basil Leaf. It was recommended by many Dravet parents I am in contact with online. Though Owen's doctor (soon-to-be old doctor if I could be so blunt for a second) refused to recommend it, many of these other kiddos have the approval of their doctor to try the supplement. It is an over-the-counter medication, and inexpensive, which is a bonus. He is doing AMAZINGLY WELL on this medication so far. Most of you who know Owen know that he does NOT go a day without a seizure. Never. We have (at school and at home) maybe, possibly seen 2 tiny seizures in 6 days!!!! Owen's teacher and I are both on the same page about the 2 seizures...we think it was one, but it could have been just a jerk. Let's hope this is not a honeymoon period and this is what we have been looking for! On top of the increased seizure control, Owen looks like a brand new kid. He is wide-eyed, alert, happy, and seems to communicate non-verbally more with us than he did before. He is sitting up better at school. Overall, developmentally he has improved since beginning the Holy Basil Leaf. And on that note I say, WOOOOOO HOOOOO!!!!!!

Owen Update 2014

Hello long lost Owen's Warriors! I have done a VERY poor job of blogging for quite some time now. Can I blame my laziness on throwing another kid into the mix?
I have good news and bad news where Owen is concerned. Let's start with the bad and get it over with. About a week and a half ago, Owen had his absolute WORST seizure we had ever seen. Up to that point, Owen's seizures consisted of a combination of head dropping, limb flailing, minor eye rolling/staring, and/or slight momentary shaking. This one was different. It lasted longer...probably around 15 seconds as opposed 2-5 seconds. It was the longest 15 seconds of our lives; it seemed like 2 hours. His entire body was convulsing. His eyes rolled back but for much longer than usual. He fell asleep after it was over, and luckily, we haven't seen another one like it since. However, the worry and constant fear--not to mention the mental image of our sweet little boy struggling--is still present in our minds. Seizures are sickening and evil!
The good news is overall Owen is doing awesome. He had a checkup in December with his epileptologist. He slightly increased one of Owen's seizure meds (which could have caused the bad seizure he had), along with discussed inserting a feeding tube. I know what some of you are thinking, "A FEEDING TUBE?! I THOUGHT HE WAS DOING WELL?!" Owen's doctor brought up a feeding tube a year and a half ago and we were terrified to even look into it. We thought it meant giving up on him. We thought that would be his only mode of nutrition, through a tube. However, after speaking with other parents and researching, we now know that Owen could still eat the same way he has been. The feeding tube will be used primarily for supplemental purposes, helping him gain a little more weight and decrease the risk of aspirating. Soooo, I think we are going for it and will see how he does. He has a consult with a GI specialist at the end of the month and then we will schedule surgery after that.
As far as developmentally, Owen is doing great! I received an awesome note from his teacher yesterday. He stood against a wall for 5 plus minutes and played with toys. He is still sitting independently (he will even sit through a seizure sometimes!). He's grabbing, transferring toys, laughing appropriately, shaking his head yes and no (most of the time). We feel like his little personality is finally showing its face! He likes to tease. He likes grandpa and papa's singing (might be the only one:)). He laughs when his brother Dex gets into trouble. It's a pretty awesome thing to see him change and grow.
Owen and Blake are best buds. It melts my heart. They sit up face-to-face and play together. Sometimes Blake will cry until Owen is sitting in front of him. They steal toys from each other. They stare at each other, and they have the most endearing looks on their faces. There is just too much cuteness going on with these two, I can hardly take it.

 

Side note: Blake is 6 months old and a nearly perfect baby (I might be a little biased on this one). I didn't realize babies existed like this! He sleeps about 10 hours at night (with an occasional nighttime feeding about once or twice a week), he is an avid blankey sucker like his big brother Dex, and all you have to do is say hi to him to get him to smile. He talks, he laughs...he is just a little ball of sunshine. Now if he could only grow some hair....