Saturday, January 24, 2015

The Extremely Short Honeymoon

As with all pharmaceuticals, the honeymoon started to fade yesterday. After having a wonderful 2-3 days when getting back on Lyrica, yet again, Mira is slowly shifting back to baseline. The smiles went away, the irritability came back, and the seizures have been ever present throughout. We have been down this path so many times and I can assure you, it is incredibly frustrating. With no remaining reasonable options with a potential efficacy rate over 0%, this is as good as it gets, which to me, is unacceptable.

Mira doesn't deserve to deal with these same ineffective pharmaceutical options, over and over again. When you have no remaining medical options left to help your child, this is what happens. Ironically, there are options that need to become available. Mira's neurologist is advocating medicinal cannabis. Yet, based on the testimony of the opposition presented in Topeka this past Thursday, the State of Kansas appears as though it will continue its hypocritical stance on this treatment option for another year. There are fighters in the state and I can't thank them enough for their perseverance in the face of so much absurd opposition. The uneducated and special interests always seem to prevail in killing bills like SB9. In the meantime, children like Mira suffer.

The same cast of characters of opposition, year after year, blow the dust of their dated and misinformed 'data' and lobby the supposed harmful effects of cannabis, presenting a plethora of dangers to the state and the community. The reality is that the perceived threat is to profits and self-preservation. Then throw in the religious card and unnecessarily muddy the waters further. Tired, irrelevant opinions and personal beliefs continue to be the basis of their argument, which has no room in a political arena when it comes to treatment options for the health of my child. It is very simple. State officials should not be making medical decisions for the citizens of this state and opinions should not be the deciding factor in this debate. Patients and medical professionals should be making those critical decisions.

While over 70% of the public is in favor of medicinal cannabis legislation, the remaining 30% includes a select minority of medical professionals (by my count is 1 who I can name specifically) who continue to not only oppose medicinal legislation, but willingly fight it year after year in this state. What doctor in their right mind would deny a scientifically proven medical option for children?

Doctors like Dr. Eric Voth, who has a vested financial interest in Stormont Vail, a for-profit medical treatment facility in Topeka. Every January, Voth embarks on his annual crusade on the behalf of his own financial interests only, while continuing to ignore existing medical science. Associating with a facility whose mission statement includes 'working together to improve the health of our community' is about as hypocritical as it gets. A facility that involves professionals who personally fight for the exclusion of life-saving treatment options is not my idea of improvement, but rather a controlling restriction on what generates revenue. Voth's views on the subject are dated extractions and opinionated at the least, which is truly frightening for a licensed medical professional. The transparency in his advocacy is so predictable and tiresome, yet people listen because it is easier than becoming educated by doing their own research.

As you can tell from my venting, I am tired of the unfounded rhetoric that the opposition continues to promote and many of our supposed state representatives continue to take the path of least resistance. Mainly, I am tired of watching Mira go through this for the past 9 1/2 years and have a state representative seriously tell me as a parent that 'you should continue to explore other options' for your child. What are those options are exactly?

I'll tell you what. I will go into a lengthy explanation of each medication Mira has tried and the risks associated with said chosen pharmaceutical/dietary/therapeutic treatment option and its efficacy in stopping my daughter's seizures. After I am finished, 45 minutes later, you can give me another option. My guess is you won't have any. Unless you are a pediatric neurologist specializing in catastrophic epileptic syndromes involving the mechanism of action of therapeutic agents on voltage gated calcium channels, then chances are, as a parent, I know far more than you when it comes to my child's issues. So, as a paid state representative, stop blocking personal decisions between me and my child's doctors.

Right now, Mira is screaming her lungs out in her bed at 10:30am on a beautiful Saturday morning. Another day in paradise.

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