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!
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