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.
Dear US Senator Joni Ernst,
I was in the Drake Diner in Des Moines, Iowa the day you came to celebrate your win for the US Senate. I was sitting in the booth right by the front door. I had my small son who was two at the time and you had a large group in the back who cheered loudly and clapped for you as you came in.
You didn't notice that when your group of supporters began screaming for you, that my son slammed his head twice on the edge of table. The noise your group suddenly made (without regard to any of the other patrons) both terrified and overwhelmed him. The metal edging on those old vintage-style tables there really did a number on my son's forehead and he had a lump and a bruise for over a week. Two of your supporters noticed my son in hysterics as they walked by. Instead of smiling or offering some form of apology for the uproar, they sneered at us as I was trying to calm him down. I'm sure they saw the huge welt on his forehead and thought of me as a terrible mother. They were both still smoking outside when we left.
You didn’t acknowledge my son that day in the Diner and you aren’t acknowledging him now. So, it didn’t surprise me when you accidentally sent me the response to "crude oil" instead of "cannabis oil" to my e-mail. It’s those little attention-to-details things one has to do when someone truly cares about their people. I was pleased to see that I received an additional e-mail today with your response to "cannabis oil" instead of "crude oil" today.
The bare-boned truth here is you didn't take the time to actually hear what my real concerns were at all. My name was just pasted into a bulk e-mail (just like the "crude oil" response) and sent on out, without any real regard to what is happening to people in the Unites States of America, let alone your home state, Iowa. You yourself claimed in your campaign that you are a “normal, everyday” Iowan. If that were true, you would listen to the concerns of the mothers and families in this state who are reaching out to you for help in Iowa and in Congress.
I was fully aware that you supported the extremely limited bill in 2014, as an Iowa Senator. That is precisely why I reached out to you. You spent a great deal of your letter explaining to me what CBD is. Clearly, I already know what Cannabis Oil is used for or I wouldn't have been reaching out to you for help in the first place. My son has Epilepsy, a Genetic Brain Disorder, a Rare Chromosome Disorder and a long list of other diagnoses you have never heard of and thanks to CBD, my son is 125 days seizure free today!
I reached out to you because I wanted you to know that the "narrow limited use of a marijuana plant" is not working for my particular situation or hundreds of other families. I wanted you to know that children are suffering in your state. Parents are forced to walk a supposed "grey area" in the law and fear that their children will be removed from the home because they are doing what is right. I reached out to you because our own Neurologist (who we'd seen since my son was 10 months old) told us we should to try CBD and was unable to help us. I reached out to you because our state capitol's only Children's Hospital will not back its use without FDA Approval and our Neurologist had to follow protocol. I reached out because that same Hospital actively lobbies against important bills that could help children like mine at the State House. I reached out to you because suffering children and adults need you to stand up and do what is right in Congress to fix things for families like mine.
Never once in my conversation with your Regional Director did I request "the opening of medical marijuana dispensaries and the use of medical marijuana in general" as you mentioned in your letter, although I feel that is the obvious thing to do when you pass a law for things like CBD but don't allow access, like we have here in Iowa.
What I did request was help for my son and for the children in Iowa to have a chance at using a natural, plant based medicine as opposed to the Pharmaceuticals that just keep piling on with every serious seizure. Pharmaceutical Drugs were the worst thing that happened to my son, thus far in his life. Not only did they create new and worsening types of seizures - they took away his ability to walk (for which he worked for years to be able to do) and they took away his words after a serious fit of side effects from the Klonopin. (We later found out he was on too much but that took us going to a World Reknown Hospital hundreds of miles away from home and five months waiting on referrals.)The Keppra he was put him on made him have serious behavioral issues where he did not stop screaming or crying for nearly 14 days straight before our Neurologist pulled him right back off of it.
You claimed in your letter that the "concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing" but that simply is not true. The research is there and in fact, the United States Patent 6,630,507 now held by the US Department of Health states cannabinoids are "substantially free of psychoactive or psychotoxic effects, are substantially non-toxic even at very high doses, and have good tissue penetration, for example crossing the blood brain barrier." In order to hold a patent, did the Government not do enough research themselves? Cited references within the US Patent go back to 1942 so clearly it is not a new concept at all.
My son is not a sympathetic story. My son is a little boy who deserves the same quality of life that all of six of your grandchildren deserve. He deserves the right to think and laugh and smile and be awake and alive instead of being drugged into a stupor on Pharmaceutical drugs whose side effects can be worse and more damaging than the seizures themselves.
If you truly understood how patients, including children like my son are struggling, you would not hesitate to stand up and do what is right in Congress. You have the power to help suffering Iowans and Americans alike.
Dear Mrs. Miller,
Thank you for taking the time to contact me about the use of marijuana for medical purposes. It is important for me to hear from folks in Iowa on policy matters such as this. Additionally, thank you for sharing your personal story about your son and your family.
Currently, some form of marijuana usage is now legal in 38 states, including Iowa. As you know, the medical use of cannabis oil extract was legalized in our state in 2014, and I supported this measure during my time as an Iowa State Senator. Cannabis oil is derived from marijuana plants and is typically used to treat epilepsy. It has high concentrations of cannabidiol (CBD), a non-psychoactive antioxidant, and low concentrations of tetrahydrocannabinol (THC), the mind-altering compound found in marijuana. Though I supported this narrow, limited use of a marijuana plant extract, I have concerns about the opening of medical marijuana dispensaries and the use of medical marijuana in general.
The concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing. Before being introduced to the market, commercially available pharmaceuticals are subject to years of research and testing in order to prove their efficacy and safety. As you may know, marijuana is classified as a Schedule I substance, a label assigned by the Drug Enforcement Administration (DEA) to drugs which it deems have high abuse potential and no medicinal value. Many contend that this classification makes it more difficult for scientists and researchers to study marijuana.
I understand that a number of patients, including children like your son, are struggling with chronic diseases and use marijuana for treatment. More research needs to be done on the medical use of marijuana and I would also like to see more evidence that the substance can be distributed in a safe, responsible, and controlled manner.
Please know that I will continue to keep your views in mind as Congress continues to work on this issue. Feel free to contact my office with any further information, as I always enjoy hearing from Iowans.
Joni K. Ernst
United States Senator
Hey there Everyone!
I'm feeling scared lately. I had been asked to do a story on the News - just sharing Abram's story from the start and how hard it has been to first and foremost - get proper medical care for a child that is so very medically complex and lastly, having legal access to a medicine that he needs so badly. I chickened out on doing the story after getting advice from other parents/advocates in other legal states.
I have written every Iowa Senator twice and have only gotten a few responses. I have written every single Iowa House Member twice as well and have started down the long line of calling home phone numbers (don't worry - they are posted publicly on their own website and completely legal). Most don't return my phone calls either.
I have spoken with US Senator Grassley himself, I have spoken with US Senator Joni Ernst's Regional Director (still waiting for an official response from her) and I have met with the Iowa Governor's Health Advisor since the Governor is entirely too busy to meet with a worried mama regarding a bill he signed himself.
I was told by the Governor's Health Advisor to reach out to the Iowa Department of Health who were by the way, absolutely sympathetic with our story - as is most people who hear it - but the law is the law and there is no way to get a Registration Card through the back door as I was led to believe. Yesterday was a hard day after several phone calls and exciting prospects only be be shoved back in the mud.
I'm trying but I'm getting the steam knocked out of me. Only 72 people have been issued cards in our state. That is not many people getting help compared to the large amount of money our state spent on implementing said cards. And when you realize that of those 72 cards - most of them are probably care givers over actual patients. The fact is - when you sign up for a card - you also have to sign up anyone and everyone who would need to be able to administer the medicine. So for our family - we would need 3 cards just for us. However, that isn't even counting any of his care providers like Respite or SCL who can administer psychotropic drugs like Valium to my child in an emergency without needing such things in place. My son CAN NOT overdose on a medicine like CBD but we have tubes of Emergency Meds that are considered controlled substances that could kill him if he were overdosed on them and no one blinks an eye. How is it that people are MISSING THIS?!
Being vocal about this is scary. Being open about it is scary. I backed out of the News Story out of FEAR. Fear that someone will take my child away. Fear of being thrown in jail for doing what is right. Fear of having his medicine taken away even though one of the Country's Best Hospitals who have a Level 4 Epilepsy standing back and support it 100% and I have proof of that within his own medical records.
I'm sad and I'm frustrated and I want to do the right thing. Standing up for what you believe in has been such a vital role in my life - my whole life. Doing that is right is scary. My son is seizure free and that is what matters the most. But the story that goes with it..... matters. He is not just a "sympathetic story" as Gov. Chris Christie claimed when CBD was brought up in the Republican debate weeks ago. My son is a boy. A human. A child. My baby. My LIFE. My absolutely everything.
And to think that me standing up and saying "Hey... our own Hospital and Physician betrayed us, the law isn't working for us and no one is helping." can land me in jail just because I said it publicly is horrifying.
I've tried my hardest to do the right thing and play by the rules. I have written so many emails when I could be relaxing or reading a book. In my downtime, I am pleading for help from anyone who will listen. I don't get to relax or have "me" time because I am always having to fight for my son's rights. When you have to fight so hard just to get good health care - only to turn around and have to fight for his medicine - it is hard not to get angry.
Change needs to happen and it needs to happen now. For him. For you. For your kids. For all of us.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
MOST POPULAR BlOG ENTRY