What a month it has been since my last blog. I am mentally, physically and emotionally exhausted. We took a trip to Rochester to see a new Neurologist at the Mayo Clinic who we really liked. We are very excited to have her join our medical team! Unfortunately illness has been running rampant around here. Four of us had a respiratory infection, five of us had a horrible stomach flu and Lauren was hospitalized for the first time in six years due to seizures. We are ready for some good health, some warm temperatures and sunshine!
I am sure you have heard the news that the Cannabidiol Act was passed early this morning by both the House and the Senate. This was a great victory for Iowa as our law makers have stated that cannabis has medicinal value. It is a great step in the right direction and I am so thankful for the majority of Senators and Representatives who took the time to be educated and make the right choice to allow this to happen. There are many heroes at the Capitol that fought very hard over the last few weeks to even make this a reality for us. Senator Joe Bolkcom and Senator Charles Schneider were the heroes in the in the Senate. Rep. Rob Taylor, Rep. Bob Kressig, Rep. John Forbes, Rep. Jared Klein and Rep. Clel Baudler scrambled and went up against many obstacles to get this done in the House. For my Greenfield peeps, a huge thank you needs to go to Clel. He was the biggest opponent in the beginning, as you know. I was very upset with him at first at his unwillingness to open his mind. But, he took time to educate himself on cannabidiol and to listen to us. He will tell you that this is not medical marijuana, it is hemp oil and he wants to make that clear. He wanted to do the right thing and he knew that this was it and the time to do it was now. He did it for the kids. There is still one more hurdle we need to get over before we can truly celebrate a victory. Governor Branstad needs to sign it. So, the battle has not been won quite yet.
This bill, although a great victory for Iowa, is a very limited bill and they are not making it easy for those of us who need it to get access to it. There was an amendment added last night from House Majority Leader Linda Upmeyer that states that only a Neurologist who practices in Iowa can recommend cannabidiol. Although Iowa does have some great Neurologists, those of us with such complicated children have to seek treatment from out of state doctors who are experts in treating intractable epilepsy. A few moms who fought really hard and had great hope had that taken away from us last night with this amendment. We do have a Neurologist in Ames who we have seen for a couple of years who has been our local contact. During my conversation with him last Friday, he led me to believe that he is not willing to refer patients. Many doctors are hung up on the fact that it is not FDA approved and they are afraid to recommend it because it is not. He is one of them. Although he is willing to prescribe our girls a seizure medication that is not FDA approved... I don't have to agree with his thinking but, I have to respect it. I will follow up with him again after the dust settles and IF the bill is signed by our Governor. Another roadblock for us is that we have to travel to another state to purchase it. This takes time and money. Cannabis oil is expensive in itself. I have yet to find a family who have very medically fragile children and have both extra time and extra money.
Now I am not trying to be Debbie Downer here friends, I just want to be honest with you that although this is a HUGE victory for the state of Iowa, there is still a lot more work that needs to be done. Rep. Klein said it best when he said, "This isn't a perfect bill, but it is a good bill." It gives families that have run out of options a chance to help improve their child's quality of life. It shows compassion to those who need it the most. Just getting our Dravet diagnosis, there is one, possibly two medications that we need to try that could possibly help our girls first. I fought so hard for this because I want it to be an option for us when we do run out and I personally met people who have no options left and it breaks my heart. They need this now! I also believe with all my heart that this medicine needs to be available to all people who suffer from other debilitating diseases. No child/adult should have to suffer when there is medicine out there that has been proven to help just because it comes with a stigma. It is my hope that in the next legislative session, a "perfect" bill can be written. It is also my hope that with half of the United States having at least cannabis oil legislation and the majority a full medical cannabis program, the federal government will do what is right and reschedule cannabis. Being a Schedule 1 substance, that means it has "no medicinal value." That is wrong.
This whole experience has been an eye opening one for me and I have learned a lot. I will be honest, I rarely pay attention to what is going on at the Capitol. I will watch the news and that is about it. Up until recently, I had only visited the Capitol on my kids' field trips. I can tell you one thing... I could never be a politician and I could never be a professional lobbyist. I met many great Senators and Representatives who really impressed me and I met some who really disappointed me. I was blessed to meet two moms, Sally and Maria that were instrumental in getting this all to happen. Sally and Maria live in the Des Moines area and they both have children with Dravet Syndrome. They didn't leave when the door was slammed in their face in February. They continued to fight, urged us all to join with them and together with the help of our amazing children, we won over the House and the Senate. I am grateful to call them friends and know that we can be there for each other as we all face the same beast in Dravet. I met many other moms and dads who have children with intractable epilepsy and hopefully will be able to continue to hear from them and continue friendships with them.
I am glad that I can put my dress clothes and uncomfortable shoes away and get back to giving my family 100% of me. After emailing every Senator and Representative I will now need to spend time taking myself off of their newsletter lists that they put me on without my consent... Some of them asked me to keep in touch with them. I thought that was very sweet. Yesterday, Lauren and Lindsey were made "Honorary Senators" of the State of Iowa. They were pinned and everything. They were hugged, shook many hands and had their pictures taken many times in their two trips to the Capitol. Little did they know, they were part of making history in Iowa.
Thank you all for your support, kind words and prayers. Yay for Cannabis Moms!
Thursday, May 1, 2014
Friday, March 28, 2014
Compassion for Cannabis
It's been a crazy train around here lately. Spring break was enjoyed by all. Mason spent 10 days with his cousins in Kansas and had a blast. Delaney worked a lot and finished up coaching her club volleyball team this past weekend. Matt was on vacation the whole week so we enjoyed having him around and he and I were able to sneak away to Kansas City for a long weekend. It was nice to get away and relax a bit although home was never far from our minds.
We followed up with our local neurologist last week and tried to do an increase on one of their seizure meds. That did not go well. Lindsey was completely crazy at times and the blinking seizures were near constant the whole time. She also had a couple of really large seizures that were not typical either. Lauren reacted the exact opposite as she was more docile than usual but, the blinks were also constant with her. We tried it for a few days and then went back down to our usual dose. That now means that we are maximized on all three medications they are on for seizures. We are traveling up to Mayo at the end of April so we will see how our consultation with a neurologist up there goes. Our local neuro was not comfortable adding in any new drugs and we were perfectly fine with that. Wish the increase would have worked but, wasn't meant to be I guess. Our bad days of blinking seizures are increasing again so we need to do something to try and get them under control. They are very disruptive to their daily living. Imagine trying to get anything accomplished while your eyes are in a constant blinking action and your brain is constantly firing. That's what our girls deal with everyday...
I want to thank everyone that showed their support for my last blog regarding medical marijuana. (From here on out I will call it by it's scientific name...cannabis. That removes the stigma associated by the "M" word.) I was moved by those who reached out to their elected officials and showed their support for legalization for medicinal use. Our legislators need to hear from their constituents who are in support of this legislation and they need to be educated about the benefits of medical cannabis. I spent Monday at the Capitol taking part in a meeting with Senators with other epilepsy moms and two war veterans with PTSD. Each of us had a chance to share our stories with the Senators and answer questions they had. One mom who was present moved with her husband and daughter to Colorado last year and is currently giving Charolette's Web (cannabis oil) to her daughter. She has seen at least a 30% decrease in her seizures since starting the medicine. That is encouraging!! I was moved by the stories of our veterans who went to war for our country and are now suffering from PTSD. Their stories of anxiety, nightmares and fear broke my heart. Listening to the stories of the other moms present who have children with uncontrollable seizures and pain brought me to tears. Wednesday we took part in Epilepsy Awareness Day at the Capitol. We were surrounded by many families dressed in purple sharing their stories with the legislators and media. There was definitely strength in numbers and it was great to be a part of it. Some very courageous Senators are putting together 11th hour legislation to try to get a bill passed this year that would protect parents who travel to Colorado to get CBD cannabis oil to treat their children. It is a long shot but, a shot worth taking. The patients would be registered with the State of Iowa, have a prescription from their doctor in Iowa, carry a medical card from the State of Iowa and could legally transport the cannabis across state lines without fear of prosecution. This is a tiny baby step in the right direction. Unfortunately, it does not help everyone that needs medical cannabis but, I am confident this will help get the ball rolling for full medical cannabis legislation. I know our stories are making an impact on these legislators and we are gaining ground on getting bi-partisan support. It seems the only one who is not willing to listen and get educated is the Governor, which is infuriating. He has gone as far as to encourage families to pack up and move to Colorado. He states he is not willing to sign any legislation for medical marijuana and is giving a list of things he "thinks" will happen instead of allowing people to educate him on how it can work in a safe and regulated way. He is close-minded and not willing to listen to the now 81% of Iowans who support medical cannabis. In my opinion, that is completely unacceptable.
Matt and I and the girls had a nice talk with Rep. Clel Baudler and were encouraged to hear that he is showing some support for CBD cannabis oil for treating epilepsy patients. If you are not familiar with what I mean by CBD cannabis oil, it is high in CBD which is non-psychoactive and low in THC the psychoactive ingredient. It will not cause the patients to get high and is administered orally, not smoked. If a recreational drug user got his/her hands on this, he/she would be very disappointed. This is what we would give our children. We will continue to work with Clel and ask for his support.
If you want to continue to help our efforts, please continue to reach out to your elected officials and ask for their support. https://www.legis.iowa.gov/legislators/find You can call Governor Branstad at 515-281-5211 or contact him by this link. https://governor.iowa.gov/contact/. He cannot continue to ignore the issue and bid us a farewell to Colorado any longer. The time is now and we will not stop fighting until this medicine is legalized in Iowa.
I shall now move off my soapbox and leave you with one last thought. GO CYCLONES!
We followed up with our local neurologist last week and tried to do an increase on one of their seizure meds. That did not go well. Lindsey was completely crazy at times and the blinking seizures were near constant the whole time. She also had a couple of really large seizures that were not typical either. Lauren reacted the exact opposite as she was more docile than usual but, the blinks were also constant with her. We tried it for a few days and then went back down to our usual dose. That now means that we are maximized on all three medications they are on for seizures. We are traveling up to Mayo at the end of April so we will see how our consultation with a neurologist up there goes. Our local neuro was not comfortable adding in any new drugs and we were perfectly fine with that. Wish the increase would have worked but, wasn't meant to be I guess. Our bad days of blinking seizures are increasing again so we need to do something to try and get them under control. They are very disruptive to their daily living. Imagine trying to get anything accomplished while your eyes are in a constant blinking action and your brain is constantly firing. That's what our girls deal with everyday...
I want to thank everyone that showed their support for my last blog regarding medical marijuana. (From here on out I will call it by it's scientific name...cannabis. That removes the stigma associated by the "M" word.) I was moved by those who reached out to their elected officials and showed their support for legalization for medicinal use. Our legislators need to hear from their constituents who are in support of this legislation and they need to be educated about the benefits of medical cannabis. I spent Monday at the Capitol taking part in a meeting with Senators with other epilepsy moms and two war veterans with PTSD. Each of us had a chance to share our stories with the Senators and answer questions they had. One mom who was present moved with her husband and daughter to Colorado last year and is currently giving Charolette's Web (cannabis oil) to her daughter. She has seen at least a 30% decrease in her seizures since starting the medicine. That is encouraging!! I was moved by the stories of our veterans who went to war for our country and are now suffering from PTSD. Their stories of anxiety, nightmares and fear broke my heart. Listening to the stories of the other moms present who have children with uncontrollable seizures and pain brought me to tears. Wednesday we took part in Epilepsy Awareness Day at the Capitol. We were surrounded by many families dressed in purple sharing their stories with the legislators and media. There was definitely strength in numbers and it was great to be a part of it. Some very courageous Senators are putting together 11th hour legislation to try to get a bill passed this year that would protect parents who travel to Colorado to get CBD cannabis oil to treat their children. It is a long shot but, a shot worth taking. The patients would be registered with the State of Iowa, have a prescription from their doctor in Iowa, carry a medical card from the State of Iowa and could legally transport the cannabis across state lines without fear of prosecution. This is a tiny baby step in the right direction. Unfortunately, it does not help everyone that needs medical cannabis but, I am confident this will help get the ball rolling for full medical cannabis legislation. I know our stories are making an impact on these legislators and we are gaining ground on getting bi-partisan support. It seems the only one who is not willing to listen and get educated is the Governor, which is infuriating. He has gone as far as to encourage families to pack up and move to Colorado. He states he is not willing to sign any legislation for medical marijuana and is giving a list of things he "thinks" will happen instead of allowing people to educate him on how it can work in a safe and regulated way. He is close-minded and not willing to listen to the now 81% of Iowans who support medical cannabis. In my opinion, that is completely unacceptable.
Matt and I and the girls had a nice talk with Rep. Clel Baudler and were encouraged to hear that he is showing some support for CBD cannabis oil for treating epilepsy patients. If you are not familiar with what I mean by CBD cannabis oil, it is high in CBD which is non-psychoactive and low in THC the psychoactive ingredient. It will not cause the patients to get high and is administered orally, not smoked. If a recreational drug user got his/her hands on this, he/she would be very disappointed. This is what we would give our children. We will continue to work with Clel and ask for his support.
If you want to continue to help our efforts, please continue to reach out to your elected officials and ask for their support. https://www.legis.iowa.gov/legislators/find You can call Governor Branstad at 515-281-5211 or contact him by this link. https://governor.iowa.gov/contact/. He cannot continue to ignore the issue and bid us a farewell to Colorado any longer. The time is now and we will not stop fighting until this medicine is legalized in Iowa.
I shall now move off my soapbox and leave you with one last thought. GO CYCLONES!
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