Legislative Update for 2016 Session

Wow, it's been forever. Almost a year to be exact. I oftentimes get lost in blood sugar checks, solving the puzzle named Owen's unpredictable seizure activity, coaching Dex's activities, keeping track of doctor's appointments....blogging has taken a definite backseat....it's actually ten miles in my rear view mirror and not even in the car. But dang it, I have GOT to make a point of documenting this journey...simply for the mere fact that I anticipate losing my mind and will need a reminder.😫 So Owen and I were in Topeka multiple times this session yet again. Our crew made history; no other marijuana-related bill has ever passed either chamber. We were beginning this session being essentially almost halfway finished. To make a long story short, our bill was changed, batted around like a pinball, amended to the point where there was nothing left of it. Its parameters no longer benefited Owen,....they nolonger helped anyone. We thought we had a decent strategy in play. We had--we thought--a few key legislators who were pushing this bill to be heard, amended to its original version, and bundled with a few other promising bills in conference committee. Well, unfortunately, legislators did NOTHING with our bill. They're so consumed with the financial hole Kansas is in that our children have to wait yet at least another year. On a related note, I feel a huge gaping hole dividing Kansans who are neck deep in this movement. Patients and people who are fighting tirelessly using an "all or nothing" whole-plant approach have been pitted against parents of epileptic children who believe a gradual process is the only way these legislators will EVER take a step in the right direction. My strategy is obvious. However, the crew I work ran into some criticism this session. We are selfish. How can we help our child and leave everyone else behind? CBD-only is not the answer, patients need more....how can you support this and not whole-plant medicine? I think the most unfortunate part of this divide is the fact that we all essentially agree on the end result. Do we as parents only believe in CBD-only treatment? Heck no. Of course we support whole-plant legalization. We are simply choosing a different path to reach the same end result. I would like to dream that someday soon we could all realize that dividing and conquering will not work. Only until we pull together in masses will we see the results we want.

Revisiting Our Diagnostic Journey

Owen was--as you are all aware--diagnosed with Dravet Syndrome about five years ago. This diagnosis however was merely based on Owen's physical characteristics, his intractable epilepsy, and developmental delay. Geneticists never found a genetic mutation linking him to the disorder. With that being said, we have always held on to a shred of doubt about this diagnosis. There were always questions, for example, "Why has Owen never had febrile seizures or seizures that last hours, or even minutes? Why do Owen's seizures seem to mostly revolve around food and mealtime? Why does Owen not possess behavioral or social issues?" Though Dravet Syndrome is a spectrum disorder and every child is different with this disease, we still wanted to look further. 

A few months ago I started this journey of looking further into Owen's diagnosis upon seeing an episode of The Doctors about a girl who suffers from Glut1 defiency. She had over 200 seizures a day; her symptoms were very similar to Owen's. Glut1 is a neurological condition in which this particular neurotransmitter transfers an insufficient amount of glucose to the brain; therefore, the individual's brain is "starving." RED FLAG. Blake has a glucose issue. Could these two diseases be related but yet present themselves differently in each child? I continued to search Owen's past medical records and compare them to online research to see what I could find. Here's what I came up with (warning: medical jargon ahead, proceed with caution:)):

1. Glut1 kiddos almost never have behavioral/social issues. This is true with Owen as well.

2. Owen was never tested for the Glut1 mutation in all the genetic testing we had done.

3. Owen showed an elevated T3 in his genetic testing, and his geneticist was positive we would find something from this result. Much to her surprise, we found nothing. An elevated T3, from my research, is linked to Glut1.

4. Owen's medical records showed a low glucose reading; however it wasn't I guess low enough to raise a red flag at that moment. 

5. Other signs and symptoms that Owen possesses related to Glut1: microcephaly (small head circumference) and strabismus (eye turning and lack of focus)

6. Glut1 is often misdiagnosed for other disorders such as Lennox-Gastaut or DRAVET SYNDROME.

7. And finally, Glut1 kiddos almost always respond well to the ketogenic diet. Well, Owen tried the diet for a year and 8 months and it didn't work; he ended up vomiting every meal for 3 months, then his dr ended up finally taking him off of it. That puzzled us.....until we found out that Owen is severely lactose intolerant. We were shoving heavy whipping cream, cheese, and butter down his throat, expecting this to work (hence the vomiting:(). Fast forward to the present. I took it upon myself to start Owen on a modified keto diet (high fat and protein, low carb). After two weeks of no seizure decrease, Owen all of a sudden showed significant seizure reduction. A UA at the time showed he had a trace of ketones....which means it was working!!! 

Now, I'm not saying Owen for sure has Glut1. But deep down in my heart I've always had huge doubts about this Dravet diagnosis. Therefore, at his last neurology appt, Owen gave blood for an epilepsy-related gene panel that tests 55 genetic mutations, including Glut1. We are waiting for the results, which should be back the first week of August or so. I wish I could conclude this blog post with a different diagnosis, but instead I will conclude with a TO BE CONTINUED.....

Hemp Bill Hearing 2/17/15

Owen and I returned to Topeka last week for a hemp bill hearing on the House side. This bill would not legalize whole-plant medical-only cannabis, but it would legalize three or four high CBD strains that could potentially really help Owen. And since whole-plant legislation seems so far down the road for these lawmakers in Kansas, this is really our only option currently.

The hearing experience was a bittersweet one. Owen and I were sitting in the front row right behind the testimonial podium. We were directly in the House committee's line of sight. During a testimonial, Owen had a pretty bad seizure. I was fortunately holding him, so I quietly consoled him as I always do while he fell asleep. After the person testifying at the time was finished, the committee had a chance to ask questions. Rep. Kevin Jones from Wellsville publicly asked me if Owen had a seizure a couple of minutes ago. He was speechless. His face dropped when I replied "yes." He couldn't find any other reply other than, "I'm so sorry. I don't know what else to say. That was just really difficult to watch."

From that moment on, I felt the entire committee's eyes on Owen. They witnessed five more seizures in his sleep in the remaining 30 minutes or so of the hearing. A few of them approached Owen and I after the hearing, introduced themselves, acknowledged they had witnessed his seizures, and offered their support and empathy. Though I absolutely do not want Owen to struggle with seizures, I am at least grateful that the committee saw firsthand what this kid endures on a daily basis.....and I hope that vision stays with them as they vote on this bill.

http://www.kansas.com/news/politics-government/article10547738.html

http://cjonline.com/news/state/2015-02-17/house-weighs-bill-allowing-medicinal-use-low-thc-pot-extract

Links and Updates about Senate Hearing 1/21/15

Gavin and I took Owen up to Topeka a few weeks ago to testify on behalf of legalizing medical cannabis for Owen to access. My dad, sister, brother, and friends Vicky and Haley Batchman all made the trip up to the Capitol to show their support for Owen. Below are a few media links from the hearing:

http://www.gbtribune.com/m/section/1/article/81244/

http://ksn.com/2015/01/22/family-hopes-medical-marijuana-can-help-their-son-control-his-seizures/

Here are some pictures of our debut at the Capitol:


                


                            

An update on how things are progressing.......
I received a flood of positive support and encouraging reactions from all avenues, including committee members, friends and family, media outlets, and complete strangers from every generation and walk of life. The one person who sat emotionless and less than moved was the one person I needed to crack....the chairperson of the Public Health and Welfare Committee, Senator Mary Pilcher-Cook (R-Shawnee). While everyone in the room seemed drawn to tears from hearing my testimony about Owen's hardships, she did nothing. It was pretty devastating to come to the realization that not everyone wants and will do what's best for our son. However, I am not defeated and have a few options to pursue, including:

1. Continue to open the lines of communication with the Senate Health and Welfare Committee. I just found out last night that if we can persuade at least 5 committee members to vote that SB9 deserves a democratic process, instead of being hushed by one opinion who's not seemingly representing the voice of the people of Kansas, then SB9 could in fact progress to a formal hearing. I know these committee members are compassionate and believe in the way our governmental system works; I am confident they will side with Owen and these other sick children.

2. I am also working to get medical cannabis amended onto another bill, a House bill this time. It is called "The Right to Try" bill, in which terminally ill Kansans would be able to use non-FDA approved or experimental medication for a debilitating or fatal illness.

3. A Hemp Bill is being introduced as we speak. Although this bill would possibly be too specific for Owen, it would be a start in the right direction....and we will take anything we can get at this point!

4. The House also has a similar medical cannabis bill, HB2011, that somewhere down the road could be a possibility if these other three scenarios don't pan out. I am beginning to reach out to House Health Committee members, hoping that these individuals will invest in Owen's well-being.

Well, there you have it, this is how I've been spending all my time these days! Speaking of spending my time, I have been in contact with our bishop from the Dodge City diocese, Bishop John (who by the way, seems to love Owen!). I wanted his opinion on the ethics involving medical cannabis and whether or not the Catholic church approves. He overall--based on a couple of emails--seems supportive. He is also coming over to our house for lunch this Sunday to discuss it further. Please wish us luck, and cross your fingers that Dex (or Gavin) doesn't say anything inappropriate!!!! :/

As always, we are so thankful for everyone's unconditional support for our family, especially for Owen. That kid is a rock star, and Gavin and I are just glad you all love him like we do.

KWCH Story About Owen

So we were on the news. This sweet young reporter named Anna visited our house, watched us play, and asked me a bunch of questions about Owen. The minute she walked through the door this is what she heard, "Hey, guess how old I am? I'm four! Hey, watch how fast I can run in these shoes! Hey, take a picture of my back!".....I think Dex fell in love.:) We were extremely happy with the story (except for the story two minutes before it on the rise in synthetic marijuana use in Salina. REALLY??!!) Of course, naturally I think about all the important information I discussed that didn't make the cut, but overall we are excited with the stir this story is causing! Here's the link in case you missed it!

http://www.kwch.com/news/local-news/family-pushes-to-legalize-marijuana-to-help-sons-seizures/29584126

Medical Cannabis for Owen 101

It's time to get educated Warriors! What do you say when someone asks you about medical marijuana, Owen, or our cause in general?

Medical Cannabis for Owen 101:

1. This is Owen's best and last hope at a healthy life. Dravet Syndrome is a developmental roller coaster of losing and gaining skills; if seizures are controlled, children oftentimes progress and thrive. OWEN DESERVES A CHANCE TO THRIVE!!
2. Medical cannabis is NOT recreational marijuana. Those who use marijuana will use it whether it's legal or not; don't let those who abuse it ruin the chances of someone who could medically benefit.
3. Legalize and tax medical marijuana so our economy can benefit...(again...those who use will use whether it's legal or not.) Law enforcement could also benefit by focusing their time, money, jail space, and energy on more serious crimes.
4. Children like Owen will not be experiencing a "high" and will not smoke the cannabis; he will take an oil-based form of the medication with food. Owen will be on a high CBD/low THC strain. In other words, it is JUST MEDICINE....without the risky side effects like that of pharmaceuticals.
5. Many others--not just children with epilepsy--can benefit from medical cannabis, namely those suffering from cancer, chronic pain, Alzheimer's, PTSD, and many more serious conditions...do you realize how many Kansans abuse, become addicted to, or drive under the influence of prescription medications that are totally "legal"?
6. One doesn't have to be a "pothead" to benefit from medical marijuana; we are a moral, educated, conservative family who has done the research. Medical cannabis could quite possibly change Owen's life.

Owen's New Fairy Godmother

Before I begin, I feel obligated to insert the disclaimer that this is a "everything happens for a reason" type story. Can I just quickly vent about that phrase for a minute please??? I HATE IT. And it's not that I don't believe it, I just hate it...mainly because I have heard it a GAZILLION times throughout the last 8 years. What mom wants to EVER believe that your daughter was taken from you at birth "for a reason," or your son may never walk, talk, or stop seizing his entire life "for a reason," or that your son will never remember life before Type I diabetes "for a reason"???? It's just a difficult phrase to digest. End of rant.

So a week or two ago, Gavin called me from a side job he is working on outside of Ellinwood. He told me the daughter approached him inquiring about his wife and what I knew about medical cannabis. He gave her my number and that was that. She called, this spunky, blonde 23-year-old fireball, Haley. Within an hour or two of calling me she was at my front door and we began discussing Owen and his journey. This was the start of an unexpected, dominating duo. Since we first met a little over a week ago, Haley has tackled the following: created Owen's FB page; connected me with an extremely helpful legislator who advises me on everything from SB9 wording to what counts as appropriate attire for political events; put together flyers, stickers, brochures, and T-shirts for Owen's cause; attended an event with Lt. Gov. Colyer with me; and contacted many AWESOME, helpful, empathetic, giving individuals including but not limited to her parents Chris and Vicky and Todd their business partner. These people have taken me in and genuinely want the best for Owen. This is one of the many gifts that Owen gives to us,....we get to see the BEST in everyone. This kid is such an awesome blessing.

The creepiest part of all this? Haley wouldn't have found me if Gavin wasn't working on her parents' house. Gavin wouldn't have taken the side job if we weren't strapped for cash and back to a one-income family. We wouldn't be a one-income family right now if Blake didn't get diabetes. And I wouldn't be a stay-at-home mom who endlessly gets to fight for the medicine my son desperately needs to try. Crazy how things happen for a reason.....:)

Without further ado, meet Haley, the boys' new honorary aunt aka Owen's campaign manager!!!

THANK YOU FOR ALL YOUR HELP HALEY, YOU'RE AWESOME!!!

Go Chiefs!...and Wildcats!

Football season is here! Which is pretty much the only reason I get excited for this time of year....new school year (no thanks), hunting season (blah), snow (please stay away), spending an hour putting socks, coats, shoes on little kids (annoying). GO CHIEFS!!!!!

Lucky Number Seven

Owen turned 7 last week. Hopefully this year will hold up to its lucky reputation and give this little boy something to cheer about! Owen had a great birthday full of people he loves the most in the world. Even though Owen has had a pretty rough go with Dravet Syndrome, he won the family and friends lottery....he's very lucky to have so many awesome people in his corner!

Big-time 1st Grader

 

Time please stop. Owen started first grade and he's pushing 50 lbs. The reality is setting in....we won't be able to just pick him up and carry him wherever we go forever. He's becoming such a handsome, sweet young man and isn't so much a cute little boy anymore. Insert sad face.

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! :)