Hello, Everyone! Last Friday, we were given the opportunity to meet with US Senator Joni Ernst. I had previously met with her Regional Director and had written her a lengthy letter back in October. The day after I had posted my letter here, I had a phone call from Washington D.C. letting me know that Senator Ernst wanted to meet my family and talk with us in person about our concerns regarding cannabis oil.
We met Senator Ernst at the Federal Building in downtown Des Moines with our friend and fellow advocate, Sally with the Iowans 4 Medical Cannabis group. Senator Ernst was waiting for us and kindly greeted us at the door with a smile. She even held the door open for us so I could push Abram through the door and into the office in his stroller. We were able to sit with the Senator in a room where she apologized for the mix-up in responses and immediately wanted to hear all about Abram and the struggles that he has had.
It's always hard to figure out what to say when folks ask that particular question because there is SO MUCH to share and it's been a long 3-and-a-half-year struggle to get here. We are finally in a place where he is functioning and not in pain, so the little boy people see today, is not the same boy you would have seen seven months ago. So, I started our story with last October and shared with her my largest concern about our journey regarding Pharmaceutical Drugs. Pharmaceutical drugs can be helpful in some ways but in some cases the detrimental effects it has on a child is horrific.
I had taken the time to print out all the known side effects of the last two Pharmaceutical drugs that my son had been prescribed. I made sure to highlight each of the side effects that Abram has experienced in yellow so that the Senator could see the side effects my son had to personally struggle with. For just two prescription drugs, there was a total of 14 pages worth of known side effects.
The first drug I shared with her was Klonopin, a benzodiazepine. According to the Stanford School of Medicine, "Klonopin is very habit forming (addictive) and may become so in only 2-4 weeks of use, causing psychological and physical dependence." In addition to and much to my horror, Stanford states that "Klonopin's effects on children, including possible long-term effects, have not been thoroughly studied."
The side effects my son has experienced on Klonopin include drowsiness, behavioral disturbances, irritability, speech problems, constipation, agitation, sleep disturbances and more. Many of the side effects that are listed, I may not know due to the fact that he is non-verbal and he can't tell me what is hurting. I made sure to let her know that BEFORE we added in a benzodiazepine, my son was able to speak at least 3 words and has since worked nearly an entire year now to get his words back but to no avail. I also let her know that thanks to cannabis, we have been able to cut this medicine by more than 1/3 and are hoping to wean him completely off this drug at some point.
The second drug I shared with Senator Ernst was Keppra. The known list of side effects of Keppra wasn't quite as lengthy as Klonopin but it also hasn't been around quite as long either. The U.S. National Library of Medicine states that appropriate studies have not been performed on the relationship of age to the effects this drug has on children younger than 4 years of age! Yet, this drug is being given to children well under the age of 4 without anyone blinking an eye. No one is crying for more research like they do for cannabis. My child was only 2 when he was prescribed that medicine and it was a drug that our local Neurologist told us he would never have put him on! We had been sent out-of-state for help and they didn't listen when I told them that our child already had behavioral issues. Some of the known side effects of Keppra include aggressive, angry, anxiety, change in personality, crying, headache, irritability, quick to react emotionally, restlessness, shaking, trouble sleeping, etc. To follow-up what "Keppra Rage" was, I then showed Senator Ernst the video of my son on Keppra. The day I made that video was the day I finally decided upon trying cannabis oil and we have never looked back.
We let Senator Ernst know that my son has not had a seizure since we started Abram on Cannabis oil in June and that we are going on six months of happiness since we started him on CBD. I hope that by sharing the side effects of the pharmaceutical drugs versus a little boy in real-life who is alive and thriving thanks to cannabis, that the Senator understands how important her support is in the Senate.
When the topic of the safety of cannabis arose, I showed the Senator the labs of the particular strain we are using. I can get more information about what is and isn't in my particular bottle of cannabis oil than the information I can get from a pharmaceutical company about a particular drug. Children like Abram are so sensitive to everything that having a natural, organic choice in lieu of a chemical option is incredibly important. Just last month we were given Klonopin made by a different manufacturer and it had a negative impact on Abe. We happen to have a great Pharmacist who changed it right back but many people aren't aware of these sensitivities.
Senator Ernst then talked about how she wanted to see more research done before she made any decisions on specific bills. At that point, I gave her a hand-written note with the information for the US Patent regarding Cannabinoids as antioxidants and neuroprotectants. I let her know that according to the patent currently held by the United States Department of Health, cannabinoids are non-toxic. The patent even states: "No signs of toxicity nor serious side effects have been observed...even in large acute doses of 700 mg/day." I also let her know that the cited research within that patent goes back to 1942. Our son currently needs what our Neurologist refers to as a "micro dose" of CBD and has seen great seizure control and cognitive gains. I'm fighting for an expanded medical marijuana bill because as my son grows - CBD may not be the only thing he will need. It is realistic for us to prepare for the need for something stronger and CBD unfortunately doesn't work for all kids. Every child deserves a legal chance at being seizure free.
We quickly ran out of time but I gave the Senator one of the "Cannabis is Medicine" tees we made to raise awareness in Iowa before we left. I hope one day I will get to see her wear it. In the end, I hope that our meeting has helped show US Senator Joni Ernst that cannabis is medicine and that it can help. I hope that it will help her realize that marijuana needs to be re-scheduled (or even de-scheduled) so that research our Politicians claim needs to done, can actually be done legally and at the Federal Level.
I hope that our story helps her see that Medical Marijuana is more about health and quality of life than it is about someone getting high. I hope that she sees that expanding the uses of this medicine could help thousands if not millions of people.
Many thanks to US Senator Ernst for meeting my family and hearing our story. It meant a lot to my family that she took the time to meet with us and hear about Abram and how cannabis has changed his life. Now we are hoping to get her support in Washington D.C.! Regardless, she was kind to us and she gives a good hug.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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