Happy Thanksgiving! / Future Plans...

We are thankful for our family and all the blessings we enjoy each day.

Hey y'all!  

If you've been following the past couple posts you've seen pictures of Otis in a wheelchair, a rabbit (it looks like a wheelchair but you stand up instead of sitting down), and a walker (most recent picture).  We've been working with tiny-k almost every week and R!KC three times a week.  Through these therapies it has been loads of fun learning new ways to help Otis, witnessing him building new skills, and just generally watching him progress through treatment.

We are so very thankful for the each day with Otis and are so proud of how much he is fighting to move forward.  Each day we get glimpses of what what Otis is capable of (he has SOOOO much potential, you can see it!) and we know that if we could just give him an opportunity to work and play without so much seizure activity...he would shine even brighter than he already does.  We are happy and proud of our son just as he is...we just want to do our best to make him smile. So we've been working out some more treatment options for Otis Flynn...  

(On a side note...I'm still trying to harness the energy generated when Otis smiles...I think there is really something there...a smile will keep you going sometimes weeks!)

Last Anti-epileptic Drug

After the last meeting with our neurologist in August, we had decided to give one last drug a shot.  So in September Otis started a new (for him) medicine called Felbatol.  This med did some good things for Otis: it cut his seizures in half and he was sleeping so much better at night.  But it wasn't all good:  Otis started having spells of severe agitation, he started having multiple tonic-clonic seizures on a daily basis lasting about 10 seconds, and felbatol carries with it some other pretty nasty possible adverse reactions that we weren't seeing yet but still could, not to mention he was still having over 100 seizures a day...too many.  We weighed out the pros and cons and decided to wean.  He'll be completely off Felbatol in about a week.  Since beginning the wean, the number of seizures (spasms) has increased, he hasn't been sleeping as well...but the number of tonic-clonic seizures has tapered off and we hope they will totally disappear once he's completely off felbatol.

What is coming up...

We've basically got 4 options:

1. Do nothing to stop seizures.

Otis' condition is progressive...his seizures will not get better if left untreated.  We cannot accept this option at this time.

2. Try every possible Anti-epileptic Drug

Otis has tried 10 different anti-epileptic drugs (AEDs)...some of them twice.  We've been told from the start that after 2-3 AEDs have failed there is almost no chance that another will work.  This statistic is compounded by the list of adverse reactions that accompany these AEDs and makes this option unrealistic.  

3. Brain Surgery

Last year we visited Cleveland Clinic and the team of neurologists there suggested a hemispherectomy.  Dr. A (Otis' neurologist at Children’s Mercy in KC) wanted to try all of our other options first.  A year later, Dr. A. has run out of available options...he says it's time to revisit the brain surgery option.  Our next visit with him is next week. Although this type of surgery has helped many children, it is permanent...and in Otis' case they gave us a 50/50 chance of any sort of improvement...so we want to be sure before we go ahead.  So we looked at the best pediatric neurology/epilepsy hospitals in the country to get a third opinion and ended up scheduling a visit with St. Louis Children's. They are currently second behind Boston overall, however St. Louis' management of epilepsy is the best.  We travel to St. Louis in February for another opinion.   

4. Medical Marijuana

Medical marijuana (MMJ) is helping people with all kinds of ailments…including children with intractable epilepsy.  Over the past year MMJ has come to the forefront of epilepsy conversations because of its success in states where it is legal.  Through social media and parent support groups we have been watching this topic…albeit with some skepticism at first…but the more information that we gather the more the skepticism has turned into belief. 

Marijuana is comprised of many different elements known as cannabinoids.  Each cannabinoid has therapeutic properties, even the THC (the one that gives you a high).  However, it is the CBD cannabinoid that is particularly helpful with seizure control.  CBD is a natural neuroprotectant that allows for improved cognition.  There is a nonprofit group called Realm of Caring that grows a strain of marijuana that is high in CBD and low in THC.  The particular strain of marijuana, called “Charlotte’s Web”, is not smoked, it is turned into an oil and mixed in with food. 

Currently Realm of Caring is servicing over 80 children with epilepsy by providing them with Charlotte’s Web.  Families from all over the country are moving to Colorado for this plant…because it works for lots of kids.  There is no guarantee, of course, but our realistic choice right now is to either cut out half of Otis’ brain, or move to Colorado to try medical marijuana.   

We are on the wait list for Charlotte's Web and are making arrangements to get Otis started on treatments as soon as possible.  Surgery may be in Otis' future, but we couldn't go ahead with surgery until we tried all other promising options first.

Our plan

• Phase 1--Establish Residency and Get Otis a MMJ card (red card)
• We travel to CO for two days during the second week of December.  
• During this brief visit I will get my driver's license (We have made arrangements for me to become a Colorado resident) and Otis will be evaluated by two doctors.  
• The signatures of two Colorado doctors will complete Otis' red card (MMJ) application.  
• We make copies and put Otis' Red card Application in the certified mail.  
• We come back to Kansas.
• Email our copies of Otis' red card application and certified mail receipt to Realm of Caring.  Once Realm of Caring receives this we get moved to the top of the wait list...and we find out when they will have plants available for us.  They harvest the plants in March and October...so we're praying for March.
• Phase 2--Move and Administer Treatment
• Once we find out when the plants will be available to us we begin to plan the move. 
• This will be the toughest part of the plan...Otis and I will live in CO while Kathy stays in Kansas until we know if the treatment works for Otis. 
• If it doesn't work, Otis and I move back to Kansas.  We still have Kathy's great job with wonderful insurance.  We still have our families close.  We still have the roots we've been growing here in Lawrence.
• If it DOES work...Kathy quits her job and moves out to start our new lives in CO.
• Once in CO and on MMJ Otis CANNOT cross the state line.  He will have to stay in Colorado.  As we understand it, if we bring Otis over state lines with his medicine we could be arrested for abuse and drug trafficking...and they could take Otis away from us...which leads me to Phase 3.
• Phase 3--Educate and Advocate
• Educate people about the benefits of MMJ.  
• Advocate for open minds and change in federal/state policy.
• We've already started on this phase...
• On Otis' main blog page we will have a tab at the top of the page with related links/stories...we will continue to update this tab as we become privy to new information.
• We will be doing more research once Phase 1 is complete and Phase 2 is underway.
• Please help us with Phase 3.

A few short months ago I thought medical marijuana was just a loophole in the system so that people could smoke pot.  I was wrong.

Regardless of how you feel about recreational marijuana use, please understand that recreational marijuana use and medical marijuana use are completely separate issues.  

I believe that people that are apathetic like I was, or even opposed to the idea of medical marijuana are that way because they do not know about people like Otis.

This treatment is saving lives.  People should not have to uproot and move across boarders within our country to receive lifesaving treatment. 

We hope this works for Otis...but even if it doesn't, it IS working for others like him, so we are now advocates for medical marijuana...and we would like to invite you to join us.

Want to Help...here's how:

Don't keep this topic hush-hush.  Help us educate/advocate by having conversations with your family, friends, communities, and state/federal representatives (whatever you are willing to do).  Having these conversations about medical marijuana will help remove the long standing stigma and shame attached to this issue and hopefully lead to an easier path to healing for those that need it.

If you have questions, please contact us.

If you've made it this far...thank you...you deserve a high-five and a hug!