Medical Marijuana: Legalize It

You had to know it was coming...Kim is going to talk about medical marijuana.  Yep, it is true.  I am 100% for the use of medical marijuana.  If I could, I would give it to my girls today.  But, I can't...legally. If you have been watching the news at all, you know this is a hot topic at the state house and actually around the United States.  Right now, 21 states including the District of Columbia have legalized medical marijuana.  Many other states have proposed legislation for this year.  Iowa WAS one of them until it failed to advance last month.  Yes, our state government found it more pertinent to legalize the use of fireworks than to pass a bill that would help to improve the quality of life of thousands of seriously ill Iowans.  Really?

Now I have educated myself about the use of marijuana to treat seizures and I am hopeful that it can help our girls someday.  I have also read and heard stories about how it helps people with other debilitating and life-threatening diseases.  Did you know medical marijuana has been approved to treat the following conditions in the states that have legalized use?  This is not a complete list by the way.  

1.Cancer
2. Epilepsy
3. Multiple Sclerosis
4. Parkinson's Disease
5. Huntington's Disease
6. Post-Traumatic Stress Disorder
7. Lou Gehrig's Disease
8. Terminally Ill - Hospice Care
9. Chronic Pain

 How many of you know someone who is affected with one of the above mentioned conditions?  Yes, all of you.  You probably know people who are affected with more than one of the above.  You may very well be affected yourself.  Is marijuana going to cure all of them?  No.  Can it help relieve the symptoms of the disease?  Yes.  Marijuana has been found to suppress cancer, reduce seizures, reduce blood pressure, reduce vomiting and nausea, alleviate pain and even inhibit HIV. It is a natural antioxidant, anti-inflammatory and neuro-protective.   Patients needing to use medical marijuana have tried traditional forms of treatment without relief.  For many, there are no other treatments available.

You do not have to smoke marijuana to receive benefits from the plant.  In our case, we would give the girls an oil that is high is CBD - the part of the plant that is not psychoactive (meaning they will NOT get high) and low in THC - the psychoactive ingredient.  Marijuana can be vaporized and also made into a tincture or capsule. There are other cannabinoids in marijuana other than THC that help treat illnesses.  So please do not think that everyone who uses medical marijuana will be smoking joints and getting high.  It is just not true!  I have included the below visual to help illustrate my point.

Many have asked me what they can do to help get this form of treatment legal in Iowa.  First of all, I would encourage you to educate yourself about it.  Many of you I know fully support it.  Many I know do not.  I ask you to educate yourself about it before making a judgement.  Iowa's most critically ill are not looking to get high for fun.  They are looking to have a better quality of life without constant pain.  They are looking to increase their quality of life while they live with a debilitating disease.  When they are in their last days on this earth, they are wanting to be able to spend time with their families in a conscious state, not a drug induced sleep.  We as parents of children with intractable epilepsy want our kids to be able to enjoy life with fewer seizures and not be in a constant state of worry that the next seizure is the one that will take their life. We are not asking for full legalization of marijuana.  Less than 1% of the population will qualify and it will be strictly regulated. We are asking for a program like what is currently being used in New Mexico.  You can easily Google their program to see how it is run if you want more information. Or, you can click here:  www.nmhealth.org/mcp

Second, I am asking you to reach out to your elected officials.  If you support it, please let them know and ask their stance on it. If they are not for it, ask them why. If you have a story how it could personally help someone you know, please share it.  If you need help with this, please let me know.  Many of our legislators are on board. Many others are admittedly uneducated but are willing to listen.  A few are just plain against it.   For my Adair County family and friends, you all know Clel Baudler is one of our biggest opponents.  I have contacted my old neighbor Clel and shared our personal story with him.  His reply to me was "Got your email. Looking it over. Putting it in my file."  (Copy and pasted straight from my email, word for word.)  Are we ever going to see him change his stance?  No, I am sure not.  But, he needs to hear from his constituents who do support it and who may or may not re-elect him this fall. So please, bend his ear and let him know how you feel.   

Please also don't forget to contact Governor Branstad and share your feelings with him. If you do not know who your elected officials are, click below and you can find out: 

https://www.legis.iowa.gov/legislators/find

Lastly, share this blog or information with your friends and family and if they support it, have them contact their legislators.  The last poll I saw showed that 59% of Iowans are for legalizing marijuana for medicinal purposes.  We need to make sure that our legislators hear from every single one of us.  We are getting closer to winning this fight and hopefully in the near future, marijuana will be a legal form of treatment for Iowa's most critically ill.

Kim
 

Final Report

It has been almost a month since we got the phone call from Pittsburgh and I think we have all come to terms with the new diagnosis.  I think Mason summed his feelings up the best when he said, "I feel like we have been living a lie all these years."  I did get a confirmation email shortly after my last post from the genetic counselor telling me that our Geneticist feels comfortable ruling out any Mitochondrial Disease.

We just got the paperwork from Pittsburgh in the mail this week with the final results.  I sure wish I had the brain to understand what all that stuff means...  Good golly some of it is like a foreign language. I can now see it in black and white that she has a positive mutation in the SCN1A gene..  I also see that she has "six other variants of unclear clinical significance in autosomal recessive conditions."  Autosomal recessive disorders are those in which both copies of a gene must have a mutation (one from mom and one from dad).  Lauren has one variant in an oxidative phosphorylation deficiency (mitochondrial issue).  So basically, she has a mutation from one of us in a certain gene but, not the other and therefore it is determined that she is unlikely to have  mitochondrial disease.  Clear as mud, right?   The other five conditions I have never heard of but, two of them mention seizures...interesting.  Will have to Google them.

If you know me at all, you know that I have spent a lot of time on the computer researching Dravet Syndrome and looking for support groups.  I did find a great support group through Facebook that has led me to a couple of local families that are raising children with DS also.  There are also people from all across the US and around the world that are a part of this support group.  It's a relief to know there are others out there that I can ask questions and learn from.  I also was given names of a couple of Neurologists who specialize in Dravet Syndrome.  We have decided to seek treatment from one who is at the Mayo Clinic in Rochester.  I called this morning to get the ball rolling to get appointments set up with her.  I had to put together some information to fax to them and then they will call us to set up an appointment.  The girls used to receive treatment at Mayo in the early years until our Geneticist left  practice there so we are already established patients there.  We are looking forward to seeing what is in store for us next.

The girls are doing okay.  Been a little rough over the last couple of weeks.  Lindsey had the worst seizure day ever two Saturdays ago when she had 10 "big" seizures. Luckily they were all under a minute in duration. I had the phone in my hand to call 911 a couple of times but kept thinking she was going to stop.  I had given her one more and then I was going to call.  Thank God she stopped!  We have gone six long years without a trip in the ambulance and we sure didn't want to have to break that streak.  Plus, had we taken her in they would have loaded her full of drugs and she would have been a big mess afterwards.  By that night she was good as new and back to her ol' ornery self.  The day before that Lauren fell forward in a seizure and proceeded to cut her eyebrow with her glasses, get a black eye and a fat lip all at once.  That afternoon Lindsey had one at school and hit her head on her desk and also had a fat lip and bruise by her eye.  Needless to say, they both looked a bit rough for a few days.  You know what?  Seizures suck!

When I was going through the girls' paperwork getting things together for Mayo, I looked through their medical records from their first two years of life.  It brought back a lot of memories.  Lauren had her first seizure with a fever when she was 5 months old.  Lindsey had her first seizure three weeks later and one day after her 6th month immunizations. It was interesting to go through and read the documentation from the hospital and doctor's office.  It made me think about all of the ambulance rides we took, some up to St. Paul.  That was one long ride...  I remember one time we were riding up there with the lights flashing and by the time we got into Minnesota, my bladder was about to explode.  So, we pulled the ambulance over at a gas station, I ran in and used the restroom and off we went again.  I wonder what the people there thought... I think by far the worst thing we went through in their first two years was the time that Lindsey had a seizure for an hour and a half, was intubated  and was then  life-flighted to St. Paul from Waterloo late one night.  Unfortunately, I couldn't ride with her in the helicopter which totally broke my heart.  There is nothing worse than watching your child being taken away and not knowing what is going to happen when you see her again.  I have a wonderful friend named Colene who drove me to St. Paul that night while Matt stayed home with the kids.  It was the longest drive ever but, I was so thankful to have her with me.  We kept looking up at the sky at every blinking light we saw wondering if that was Lindsey...  She was in the ICU when we got there and was in really rough shape.  Sometime in the wee hours of the night after speaking to the doctor, Colene and I were taken to a utility closet just off the ICU floor where we shared a bed and got little sleep.  We have chuckled over the years about the night we slept in a utility closet.  It was that time while Lindsey was inpatient in St. Paul that we got the results of her muscle biopsy and were told the girls had mitochondrial disease.  Luckily we did not have another helicopter ride and our many ambulance rides were local from then on.  And as I said earlier, we haven't been in an ambulance for over six years.  We have come a long way!

Enough of my ramblings and reminiscing.  I am reminded once again how God has protected our girls over the last 12 years and am so thankful for His grace and mercy. We are blessed beyond measure.  I will leave you with this picture of our precious girls.  Lauren was having a particularly bad day and Lindsey kept watch over her.  We should all be so lucky to have unconditional love like this.