Last Friday, my family along with another Iowa family had the great opportunity to meet with US Senator Charles Grassley. The Senator was gracious and allowed us twenty minutes to discuss with him the obstacles our children have faced in regards to their medical history, lack of seizure control before CBD and to discuss the Compassionate Access, Research Expansion, and Respect States Act of 2015, also known as the CARERS Act.
Many people in Iowa don't quite understand the gravity of the matter when it comes to US Senator Grassley's involvement in medical cannabis. To our family, not only is Senator Grassley an Iowan, he also sits as Chairman of the Committee on the Judiciary and holds the key to families like mine gaining legality at the Federal Level. Without Senator Grassley allowing the CARERS Act to a vote in the Senate, families like ours will continue to fear being prosecuted at the Federal Level regardless of our state's laws.
Senator Grassley was kind enough to get down to the details on the CARERS Act right away. He shared many of his concerns with this bill including the worry that by allowing each state the right to create their own marijuana laws, that the United States would inevitably end up with 50 different marijuana laws. The Senator feels that it is important for marijuana laws to have uniformity regardless of the fact that 23 states already have legalized some form of marijuana. Senator Grassley also shared his concern that smoking marijuana is not supported by medical research. However, the type of medicine we use for our children comes in an oil form and is taken sublingually. The Senator also discussed that he did not care for the banking section of the CARERS Act at all. When I asked if that part of the bill could be discussed and changed if it were allowed to go to vote in the Senate, he said that it could. So as a parent, I am having a hard time fathoming why the CARERS Act is not being allowed to be sent to the Senate for a vote when the items that the Committee on the Judiciary find concerning would actually be up for discussion at that point.
As we chatted, our families talked to Senator Grassley about the side effects our children have faced due to pharmaceutical drugs. Abram's quality of life seriously diminished after he was prescribed Clonazepam, a benzodiazepine. I shared with the Senator that according to the FDA, there is no clinical trial experience with Clonazepam in patients under 18, that 30% of the trial patients had nervous system damage resulting in Ataxia, and that the adverse side effects on mental development could not become apparent until many years later.
At that point, I presented the Senator with a little informational brochure. The imagery shows the regression of my son on too much benzodiazepine and the progression he made with the addition of the CBD. You can see in Abram's eyes that his life was improving. While looking at this image the Senator's eyes widened and he said: "You really CAN see a difference, can't you?"
In addition to the FDA's trials on the particular drugs that reeked havoc on Abram's health, I also brought along the patent held by the United States Department of Health and Human Services that proves that Cannabinoids are safe and non-toxic up to 700mg. Abram only needs a small .10mg dose twice daily to have 100% freedom from physical seizures. I asked Senator Grassley why marijuana was still on the list of Schedule I Drugs when their Patent 6630507 proves marijuana in fact does have medicinal value but I did not get an answer.
Senator Grassley just reiterated that there is a lot of movement towards medical marijuana and that research on CBD is not on federal barriers. He reminded us that he and Senator Feinstein wrote letters to the Department of Justice and the Department of Health and Human Services asking them to classify CBD separately from the whole marijuana plant. He also reminded us that the federal government also removed the Public Health Review process that marijuana researchers had to undergo, a move that has allowed marijuana to be studied under the same amount of restrictions as other Schedule I drugs. To give credit where credit is due, Senator Grassley has taken a few steps in the right direction but we need more action from him and our federal government and passing the CARERS Act to the Senate for a vote would be a great step.
I tried to explain that CBD has been great for us and although Abram is seizure-free right now, the reality is that with our son's rare UBE2A gene mutation, the need for stronger medicine will most likely be a reality. (People often mistake Abram not having seizures right now as Abram being "cured" and that he'll never have a seizure again. This thought is foolish and I must clarify that regardless of AEDs and CBD, our son's brain is permanently injured, he has a neuronal migration disorder, already has atrophy in his hippocampus and his brain still fires irregularly all the time during the day and during the night. CBD has managed to keep those electrical shocks from manifesting into physical seizures but make no mistake - free of physical seizures does not mean free of abnormal brain activity.)
I tried to explain to the Senator that Abram is doing well right now but as he grows the need for a stronger CBD/THC ratio may become a reality sooner than later and that if/when that need arises I will have to break both state and federal laws to do just that if laws stay the way that they are. I intend to fight for Abram's right to that medicine now in hopes that when he needs it; I won't have to continue to worry about being a Felon by doing so.
While CBD doesn't help everyone, it does have the power to save lives. CBD has changed my son's life and it has changed the lives of many children that I know and love. I tried showing Senator Grassley as an example that if CBD helped just 10% of the 50,000 Americans that die each year due to seizures, that he himself would be responsible for saving at least 5,000 epileptic lives each year. Senator Grassley seemed a little exasperated at that number and asked why they would continue to push for these laws when "only" 5,000 lives would be saved. That statement took me off guard for several reasons because sitting right before him were two families and two boys whose lives had been changed immensely by CBD. Our sons' lives would be counted amongst those 5,000 lives. Yet, I couldn't help but to wonder what number of lives the Senator would deem worth saving. I would hope that ONE LIFE would be worth fighting for. While I bit my tongue, the other family spoke up and reminded him that that number was only meant as a representation of the epileptic lives he could save each year and that it didn't even include the impact he could have on the other people who suffer from different debilitating diseases and disorders.
Luckily, his exasperation at theoretically "only" saving 5,000 epileptic lives annually made a good point as to why we need broader medical cannabis laws. CBD has changed my life, my son's life and the lives of the family who sat along side us in the meeting with Senator Grassley. Our children are proof of the success that children with seizure disorders can have on CBD. Even the Senator himself could see how CBD has changed the life of my son just by looking at the photos I had given him. Our children are a testament to how well CBD can work.
However, CBD doesn't work for everyone and I refuse to fight for just part of a plant when my friend's children are still suffering. I also refuse to stop at CBD only because I myself may find that Abram needs something more as he grows and as his brain develops. Abram's gene mutation is rare and the only other family worldwide known to have this specific gene mutation lost a child at 11 to a seizure. I want to ensure that my son has legal access to whatever he may need - whenever he may need it.
Alas, our time quickly ran out and after taking our photos with the Senator we went our separate ways. Many thanks to Senator Grassley for taking the time to meet with our families to discuss how CBD has changed our lives and to try to understand how important broader medical cannabis bills are to families in situations similar to ours.
Cannabis is medicine. The government has already proven it. There are families being torn apart and lives being uprooted so people in situations similar to mine can give their child a chance at life. Please, take the time to write to your Senators, your Representatives and your Congressmen. Change needs to happen now and we need your help to stand up for what is right and speak for the little ones who don't have a voice. We are not criminals. We are parents just trying to do what is best for our loved ones, same as you.
Below is more of the "brochure" I made about Abram. Enjoy.
Just before Christmas last week, we received a phone call from our Genetic Counselor at the University of Iowa. Over the summer we had met with a Geneticist again after our son had several new diagnoses and we were thankfully too impatient to wait another year to pursue answers.
The answer to the cause of all of our son's medical diagnoses is officially called "UBE2A X-Linked Mental Retardation." It is rare and we are the first case that the University of Iowa has ever seen. There are only 8 other cases noted world-wide and counting ourselves and another family I was lucky enough to stumble upon via Facebook of all places - that totals just 10 cases amongst just 7 families so far. This has absolutely blown my mind.
I will admit that I sobbed through reading the entire case study that was written in 2006. It was hard reading that out of all 8 patients cited in the study that none of them spoke. Other commonalities include my son's pineal cyst, seizures, his "dysmorphic facial features", large fontanelle (that didn't close until he was nearly 3), hypotonia, funky toe nails, puffy feet, skin abnormalities, his intellectual disability, fused horseshoe kidney, seizures and his brain abnormalities as well.
We were told that the Geneticists are officially learning from Abram and that there wasn't anything that they could tell us to do besides what we are doing already. Abram has been in multiple therapies a week since before his first birthday and gained the ability to walk just last Christmas. Reading that he may never speak hit me hard but I am doing what I can do to help him communicate the best. We are already in Speech twice a week, have been working on Feeding Therapy for over a year and he has Occupational Therapy as well every week. We are doing exactly what we need to be doing to give our son the best life possible.
The SLPs we have working with Abram are amazing: one works towards Neuro-Development with breathing, pressure points and learning some signs while the other works on eye contact and making requests appropriately as well as mimicking gestures and hand-movements. All these tasks require the hand-eye coordination that he needs so badly to be able to sign better vs. approximations and to eventually learn how to use PECS.
Searching for an answer and a diagnosis was a difficult task. There are many people out there who feel uncomfortable with genetic counseling and feel that physicians "tear their children apart" visually. When doctors and specialized physicians look at my son they see macrocephaly, dysmorphic facial features, a transverse palmer crease, hypotonia, diastasis recti, hypoplastic toenails, hypotonia and an epileptic. I was honestly RELIEVED when we met our first Developmental Specialist who looked at my child and starting at his head went down his entire body pointing out the physical markers of what she knew to be a part of a bigger picture.
We now know that "bigger picture" is the UBE2A gene mutation.
With Genetic Counseling comes the discussion that you could pass this on to another child. Abram's condition is "x-linked" which means that the mother is a carrier OR it could happen spontaniously. I plan to get bloodwork done to find out if I carry this gene mutation and what precautions I need to take for my own health, if any.
Genetic counseling from here focuses primarily on reproduction. Despite the fact that I personally hadn't planned on having more children - this diagnosis would not prevent me from having another child. The gentle tip-toeing that happens when it comes to diagnoses like this and future pregnancies makes me sad. To think someone would NOT want to have a child because of this diagnosis breaks my heart. This little boy has taught me so much about life, love and to slow down for all the little things. His smile can melt the most bitter heart and his hugs make all my petty thoughts go right out the window. He is Abram and the world has so much to offer him. I would choose him all over again. Without this diagnosis I would have missed out on an entirely different world - a world I could not picture myself without.
Does this diagnosis change things for Abram? No. We will have to continue to do what we have always been doing. We will provide all that we can to ensure that he has the best life possible. Will sharing our story possibly help someone else down the road? Yes. Absolutely, Yes!
Abram will now inevitably be a patient in a future case study on UBE2A. Optimistically, when another parent reads about "Patient #9", he will give another worried parent hope that their child will be able to do so many more things that the case study states. This is a new syndrome. Perhaps someday it will have a name and it is most likely under diagnosed.
So much of Abram's future depends on intervention and therapy now. The only thing that I can do is to continue to share our story and our successes. I hope that by doing so I can meet more people with this diagnosis who are going through similar struggles. I hope that Abram can blow this whole "absent speech" thing out of the water but if he doesn't I will help teach him other ways to communicate. His facial expressions already say so much more than words ever could. Life is too short to concentrate on the things that he cannot do.
Abram can light up a room with his smile. His laughter can wipe away any tears. His fierce love (ahem - obsession) of kitties is heart warming. His hugs light up my word.
Diagnosis or no.... there is ALWAYS HOPE.
With love from Iowa,
**Updated to say this: Even our Geneticist felt extremely uncomfortable using the term "mental retardation". The case study that I was given to learn about my son's condition began by telling me what a burden people with this diagnosis are on society. Sadly, so many people have used the words used to describe a medical condition and use them in a hurtful way towards people. Although this is our son's medical diagnosis - there are better terms for this condition such as "intellectual disability" and I hope that the medical profession catches up. A medical diagnosis is what it is. It isn't anything to be ashamed over. It is a diagnosis and nothing more. It doesn't define our son, nor will it ever define him. Abram is more than a diagnosis and more than a word. If you find yourself using "mentally retarded" as an insult to someone - please think twice about it. You are hurting more people than you know.**
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.
I've been trying to make a point of taking a few minutes each day to share something about how Epilepsy affected our family. It's only been a little over a year since we got an official "Epilepsy" diagnosis. However, it has been with us since the day my son was born. Unfortunately, it just took the doctors over three long years to figure it out.
As a newborn, my son never stopped screaming, crying, writhing in pain and rarely slept. If he did, it was never longer than a couple of hours and then it was right back to the screaming. Nothing soothed him. Nothing made him feel better, although sometimes the sound of the vacuum would relax him until the moment I dared turn it off. (I read that trick in a colic book.)
Our first Pediatrician failed us miserably. He not only missed many genetic markers that are obvious to most other doctors we have met, he brushed off all of my concerns and claimed that I was a "nervous mom" and that my son's issues were nothing more than him "being a little colicky" and "acid reflux".
It took the first ten months of his life for someone to listen and even then it was an off-chance meeting with a Pediatrician we'd never met who asked me what was wrong with Abram's eyes and had concerns for his large head. Thanks to that man, we were referred on to Neurology and we started on our journey to answers but they certainly didn't come easy.
Since the Summer of 2013, we have seen dozens of specialists including numerous Neurologists, Neurosurgeons, Epileptologists, Nephrologists, Endocrinologists, Geneticists, ENTs, Developmental Specialists, Cranio-Facial Surgeons, Orthopaedic Surgeons, Physiatrists and more.
Last month was literally the first month where Abram did not have to go to the Hospital or have any Doctor's Appointments since the day he was born!!! We spent it going on lots of walks, attending all of his therapies, going on a train ride, going on a horse-drawn wagon and checking out a Fire Truck at our tiny town's Halloween shindig. It was incredibly refreshing to have a month off.
Yesterday, we traveled to our University Hospital again where we had a follow-up with Abram's Developmental Specialist. She stated that I am doing everything that I CAN do, so that was a relief. We were informed that with the new "Neuronal Migration Disorder" diagnoses that he now qualifies for the Brain Injury Waiver and for the Health and Disability Waiver in our state - so if he should ever outgrow his current Intellectual Disability Waiver - we will have already applied for the other Waivers in hopes of never having a lapse in his care.
The Mayo Clinic gifted us an answer after we'd been fighting for so long to get one. I feel lucky that we have a wonderful Pediatrician (she started her own Special Needs Kids' Clinic) who went to bat for us to be able to get us there. It took five long months of waiting to get the referral but it was well worth it.
If you are fighting for a Diagnosis for your child, don't give up. I know that it's a long and difficult road. I personally had a lot of people ask me why I wanted a diagnosis, it is just a "label" after all. I cannot disagree more with that thought at all.
For us, a diagnoses meant everything. We needed to know what caused our son's Epilepsy and Global Developmental Delays so we could know how to best treat it. What we finally learned at Mayo explained the cause, which in turn can help us with his treatments. The information and "labels" that we got will help us help give him the best possible life by giving him the therapies that he needs the most.
Some of his new diagnoses include a Neuronal Migration Disorder (Cortical Dysplasia), issues with his hippocami twisting and Mesial Temporal Lobe Sclerosis. These issues explain nearly all of his other symptoms and diagnoses. There is no treatment or cure for his migration disorder and they types of seizures he suffers from do not have a surgical approach that can help them.
What we can do is keep doing what we are already doing: therapy and lots of it. Abram is currently in Speech, Occupational Therapy and Feeding Therapy. He "graduated" Physical therapy when he started walking but he will have to go back within the next couple of years so he can learn how to conquer things like going up and down stairs and jumping. He lost his words with his last round of serious neurological issues last spring and has yet to regain them but he is beginning to make more and more sounds and is finally able to point and use a pincher grasp at 3!
Abram's life is changing. It's not easy. It's a lot of work for him but he doesn't know it any other way. His fierce willingness to fight for mobility, to speak and to keep fighting to learn and re-learn how to do that blows any of my life's issues out of the water. This kid is incredible. He's my little fighter. My little badass. My little Abram Mayhem.
My little boy amazes me every single day. I love that when I look back at just a few weeks ago (let alone months ago), I can see all these incredible improvements. Many of which the "professionals" told us he may never be able to do. Abram has a serious knack for proving people wrong. We have Cannabis Oil to thank for much of it in addition to the hard work he puts in every single week at therapy with his Occupational, Feeding and Speech Therapists. We are lucky to have accumulated an amazing team of therapists and SCL/Respite providers who work with our family to give him the best life possible, as well. If you are reading this - Thank You.
When our Neurologist first told us about cannabidiol, it was in regards to how shocked he was at how well some of his other kids were doing. I remember him telling me specifically about one child who came in walking and talking when before they were unable to talk or willfully be examined. When I heard him say that cannabis helped a child gain the ability to talk on TOP of having the ability to gain control over his seizures - my heart got hopeful.
It took me months to decide on trying it, despite the numerous times that it was brought up. I was nervous. And scared. But if you know us or have read this Blog, you know how Abram has suffered. You know how many doctors have told us incorrect diagnoses including one Neurologist who told us he was "fine", an Orthopaedic Surgeon who told us he may never walk and a Pediatrician who missed absolutely everything about my son's health issues for the first 10 months of his life.
Before Cannabis Oil:
After Cannabis Oil:
He hasn't gained his words back (he had Mama, Papa and Cat before March), but he is making new sounds all the time and is working incredibly hard for his Speech Therapists. Seizures stole his words but they didn't steal his determination and his inane desire to prove everyone wrong and do all the things he sets his mind to.
It has officially been a year since Abram was officially diagnosed with Epilepsy. I had no idea what the next 365 days would bring us. But here we are! It only took five MRIs, five EEGs, four long hospital stays, four Neurologists, four Neurosurgeons, four world-reknown skull based surgeons, three Epileptologists, three VEEGs, three sleep medicine doctors, two Nephrologists, two Endocrinologists, two ENTs, two Genetic Counselors, two Pediatric Development Specialists, one Craniofacial Surgeon and one Ambulance Ride.
But today, I can say "My son is 127 days seizure free, today!" I realize that as he grows our need for stronger medicine will most likely rise - which is why I am fighting for changes in our laws.
If you live in Iowa and have been touched by our story, please write to our Legislators! I also encourage you to write to our US Congress by writing to your Senators and your Representatives! Help spread the positive message that Cannabis IS Medicine.
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
Last night was my first town hall meeting and the very first time that I spoke publicly about my son's health care issues and needs. It was hard for me to do and very emotional. I was so nervous when I was handed that microphone that my heart was beating in my chest. I honestly can't even remember exactly what it is that I even said but it went something like this:
"Hi. My name is Erin Miller. My son has been a patient of Unity Point since he was a tiny baby. Your Neurology Department found the mass in his brain at 10 months old. They guided us through his first Ambulance Ride and following Hospital Stay and they were the ones who gave us our son's Epilepsy Diagnosis last October. Your Neurologist also was the person who encouraged us to try CBD and then was unable to sign our card for us. So, I'm curious as to why your Hospital has a policy against CBD when your Physicians feel otherwise".
As I said this, I could see the woman sitting next to me furiously shaking her head "no" and instead of allowing the Nurse Practitioner (who was the one speaking at this event) to answer, the woman seated next to me was handed the microphone.
She introduced herself as Chaney Yeast, and promptly informed me that what I was saying was incorrect and that they do not have a "policy" against CBD. I don't recall what else she said because I was absolutely floored at what I was hearing. As soon as I heard her say her name I knew exactly who she was. Unity Point's lobbyist who fought AGAINST the CBD Bill in 2014 was sitting right next to me. She also happens to be the Manager of the Regional Child Protection Center at Blank Children's Hospital.
When I first started getting involved in legislature, I read about Chaney Yeast in the news because she was the woman who stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.”
I found it interesting that a woman in the crowd was trying to tell me what I have lived and experienced for the whole of 2015 was untrue. I let her know (with microphone in hand) that their own COO had spoken with me on the matter and that I have a letter from him admitting that they won't back it until the FDA approves the use of such oils.
We each only had 3 minutes so that conversation went quickly but I scooted next to her on the bleacher and showed the before and after photos of my son and told her of all the improvements that he has made courtesy of the CBD. I explained to her that her Hospital was unable to help us on more than one occasion and that it was difficult to understand how a Physician can tell us behind closed doors to try a medicine and then not give us legal access by signing our Application for a Registration Card. I reminded her that I'd written to their CEO and their VP only to be ignored. But she held fast to saying that none of their Neurologists feel comfortable with CBD or signing for anyone.
I was hoping that hearing what we'd gone through with the ups and downs of diagnoses and medical emergencies and their own physicians throwing their hands up in the air and admitting defeat in not knowing how to help - and admitting to us that they didn't know what to do would make her realize how poorly their hospital policy is affecting people. But... she held on to her point that Unity Point does not have a "policy" against CBD - that they are just waiting for FDA Approval. However, they as a Hospital actively lobbied against the CBD Bill in 2014 and will clearly continue to do so which breaks my heart for all of the other children who suffer, who need help and who are being ravaged by pharmaceutical drugs.
So, I decided to look up the definition of "policy" to see for myself if I was missing something. What the difference is between not acting on helping a patient (while waiting for approval from the FDA) and the literal definition of "policy" was. Here is what I found:
noun, pol·i·cy often attributive \ˈpä-lə-sē\
Definition of POLICY1. a : prudence or wisdom in the management of affairs
b : management or procedure based primarily on material interest
2. a : a definite course or method of action selected from among alternatives and in light of given conditions to guide and determine present and future decisions
b : a high-level overall plan embracing the general goals and acceptable procedures especially of a governmental body
Perhaps I am just reading the Dictionary wrong but it seems to me that their actions definitely prove that what they are doing is indeed a "policy" but that is clearly my own opinion. As a mother whose child has been directly impacted by this (non) policy - this is just hard to swallow. I just don't understand why they aren't helping.
She tried telling me that we are on the same team and fighting for the same things but I disagree. I don't think that it is okay for a Physician to tell a scared set of parents with a sick little boy that a) they don't know how to help and b) tell them that they should give CBD a try and then not actually be able to help. She told me that she knows that none of them are comfortable signing for the cards. In my opinion, it is wrong for them not to sign when they themselves felt that it would benefit our child. A hospital's non-policy or hesitence to not help and even hinder the cause says everything that it can possibly say without even uttering a word.
Clearly, I am thankful that our Physician told us to try CBD a handful of times before we finally decided to pursue that option. If he hadn't done so - my son would NOT be seizure free today. My son wouldn't have those awful side effects from CBD like cognitive gains, sleeping, eating, playing with other children, actually being able to play with toys and improving on his fine and gross motor skills like a champ. That physician saved my son's life. And even though I am angry at him for not standing up for what is right or what he felt was best for our child... I am thankful for him telling us about it. I understand that he is an employee and has to follow the guidelines set upon him by his employer like anybody else. It just happened to affect my family personally and I took it personal as most rational people would.
Last night was an emotional night for me and of course I barely slept a wink because all I could think about was "what if". But I can't think that way anymore. I'm changing all those "what ifs" to What Now.
I am doing all that I can for my son. I am a good mother. I am a fighter. I am an Advocate and now that makes me an Activist, too. Standing up for what you believe in is hard. I sat in those bleachers with tears pouring out of my eyes as I spoke to that woman but I said what I wanted to say.
We definitely aren't fighting the same fight but in the end, she gave me her card and I shook her hand. I just hope that she listened and actually heard.
TODAY marks 115 days SEIZURE FREE courtesy of CBD.
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.
We finally made it to the Mayo Clinic in Rochester, Minnesota last week. I must once again thank everyone for the help they sent our way in the spring so we were able to afford to stay out-of-town while our son needed to be in appointments throughout the Mayo Campus for the last week.
We FINALLY have an extensive medical team standing behind us and for us. The level of care and compassion at Mayo compared to anywhere in Iowa was beyond any expectations that we had. We did not get good news but it was news we needed to know and it is never easy to hear unexpected results after your child undergoes his fifth sedated MRI at just over 3 years of age.
In the last 7 days we met with a new Neurologist, Neurosurgeon, a Geneticist, a Genetic Counselor, a Genetic Researcher, a new Developmental Pediatrician, ENT and Sleep Medicine Physician. My son had to endure an MRI with lumbar puncture, multiple blood draws and a 16-point sleep study and another Video EEG in the last week.
They used a different kind of MRI machine on Abram in Minnesota called a 3 Tesla. (You can read about it here.) Basically, this MRI takes thousands of images in comparison to the hundreds that are taken here. Which means a clearer picture of what is going on within Abram's brain, literally.
Sadly, they found that in addition to the Pineal Cyst they have also discovered that Abram's brain has multiple abnormalities. It turns out that while he was developing, some of the gray matter in his brain did not "migrate" out to the outside of his brain. So, he has certain types of brain matter within the white matter of his brain that is not supposed to be there and he also has grey matter within his cerebellum.
These changes are what they feel are causing Abram's seizures causing him nearly all of his issues including his inability to retain language. They are not sure if he will ever be able to speak but they aren't ruling it out, either. So in that way, we will just keep on doing what we have been doing and immersing him with as much therapy and outside help that we can get. We FINALLY have an SCL and Respite Team that we adore and are working TOGETHER to do the best for Abram.
We also have been advised to do a Full Exome Genetic Test. In doing so, it will check all of Abram's Genes and see if there are any abnormalities that the three of us don't share. From there, they can try to narrow it down even more if they happen to catch something. We have joined Mayo's Research Study so any testing that happens after the Full Exome will be covered in full in trade for our DNA.
Many people don't understand the point in doing this sort of testing but this is what they need to understand: Genetic Testing is not to figure our what is "wrong" with our child. It is not to be used to point fingers at which parent a child got handed down a gene from. This is about how to prepare for our son's future. This has the potential of not only possibly catching something to help Abram live the best life but it also has the potential to help other families who come after us. Abram's story, diagnoses and genetics has the great chance of helping another child and another family know what to expect. This is about doing what is best for Abram. If they don't find an answer - so be it. If we find a causative gene - we can help pave the way on how to best prepare a family with a similar diagnosis.
The EEG found that his brain fires all of the time from all over the place, due to the fact that he has grey matter where it shouldn't be. There is no surgical fix for that type of seizure so it is something he was born with and will always have.
In addition, the feel that the pineal cyst is significant and want us to get another scan in 6 months. I was hoping that this would be the last time they would tell me it was "incidental" and "not causing any issues" and we could go on with it. It just sucks is that the reality of it is that it requires constant monitoring. And constant worries about the effects of the Anesthesia on our son.
The best news was that when I shared that my son was on CBD and had been 9 weeks seizure free they all didn't look the least bit shocked and were pleased to see that it was working. It was even referred to as an "innocuous drug" and without side effects.
I was told that there was NO NEED for the change in meds (in addition to his Clonazepam) and that if nothing's broke - you don't fix it.
CBD has given my son the first summer in his life where he was able to enjoy it. He laughed more. He loved more. He got to be a little boy for the first time in his life.
He got to run the first time and get a skinned knee at his Grandpa's. He got to go to the splash pad and have fun with other kids. He got to go to the play area at the mall for the first time ever without hightailing it for the car because it was too overwhelming.
We didn't get the answers we wanted but we got the ones we needed. I officially know that I am doing all that I can for my son. We officially have a TEAM of medical sub specialists who are willing to help us and take care of our medically complex boy.
I have written to you (Bill Leaver and Kevin Vermeer) several times since June with no response. Julia is listed as a contact for media on the Unity Point website and I have not received a response from her either. I called and left a message for Mr. Vermeer's assistant last week and did not receive a response that way either. Incase you didn't receive them before, you can find them by scrolling past this email to the bottom as they are also included in this email.
I have shared my story with the Des Moines Register, Associated Press, the President of the Iowa Senate as well as with all of the Republican House and Senate Members. Senator Grassley's office admitted that they were aware of your hospital policy not allowing your physicians to sign off on the CBD cards, which I found shocking. I also have contacts at most of the major news outlets for television as well. I am sure Iowans would be interested in hearing that the non-profit and publicly funded hospital who touts in their commercials about how much they care for sick kids are blocking an already extremely limited bill that parents fought so hard to get.
Perhaps my last emails were too lengthy but it is difficult to share my son's story without it. I am not going to write why I think CBD is a good choice for my child. Your hospital has made it clear with its policy that you don't trust your own doctors let alone the parents of your own patients to decide what is best for their children.
So I will just share with you some facts about my child's healthcare journey. My son just turned 3 this month. In those three years he has had to fight so hard to do things that other kids and families take for granted. Two years ago, I was informed that he has a mass growing in his brain and that the mass would most likely cause seizures and that it would require surgical intervention at some point in his life.
The mass is circled in yellow below. Due to that mass, my son has to go through routine MRIs which are dangerous in so many ways to a young body. Yet, your hospital won't let us have legal access to a medicine which is anti-tumoural and anti-seizure. Instead - you would rather us put him through MRIs and multiple sedations to make sure it isn't growing. So every six to nine months we have to say goodbye to our son and pray that he wakes up from sedation and that he doesn't stop breathing during the procedure again.
In addition to the mass in his brain he also suffers a Rare Chromosome Disorder called 7q31.31 which deleted the KCND2 gene, which also pre-disposes him to Epilepsy. He is just ONE of THIRTY-FIVE people in the world who are known to have this.
We learned all of this before he turned 18 months old. However, on top of that he was also diagnosed with Hypotonia (he was unable to walk until he was 30 months old), Sensory Processing Disorder, Microganthia and more. His diagnosis list doesn't stop there but due to the fact that you have zero care in the world for what my son is going through or what my family is going through. After all, your paid Lobbyist/Employee/Manager of Child Protection at your hospital stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.”
We have seen three Neurologists and five Neurosurgeons. We have been to two Nephrologists (one who incorrectly diagnosed my son at YOUR hospital - forcing us to go to Iowa City), we have been to the CDD to meet OTs, PTs, STs, Developmental Specialists, we have put him through FOUR EEGs and FOUR MRIs and we have seen countless other specialists like Endocrinology, Orthopaedic Surgeons and Cranio-Facial Surgeons. We have been to the MN Epilepsy Group and are heading to Mayo for their diagnostic clinic in the upcoming months as well due to the fact that no one in Iowa can put the pieces together for us.
I am writing you because I think that if you even took one look at these kids and the lives that they live you would understand that they need help NOW. My son needs reprieve.
His Generalized Seizures and Abnormal Brain activity make is so that he never gets a break. Can you imagine getting shocked all day, every day and even while you are sleeping? Could you imagine how the lack of sleep would make a person feel? My son has never had a full good day. My son has never had a full night's sleep. My son has never had a summer or a spring or a winter without countless appointments and that doesn't even count his therapies. Can you imagine working for months and even years on learning words only to have them taken away by a seizure? Can you imagine how hard it is as a parent not to hear your child call you Mama?
It is heart breaking to try to share his story with people who are so against a medicine that may have the chance of changing his entire quality of life. A medicine that has been proven in other countries and other states to be effective on Epilepsy. However, my son doesn't just have Epilepsy. He also has that mass in his brain that I shared with you.
If that were your child - wouldn't you rather take the slight risk of giving him a medicine that could have the possibility of not only taking away his seizures but also shrinking that mass in his brain? A mass that all of our specialists are waiting to grow. A mass that has doubled in size since 2013. A mass that can cause life threatening and irreversible neurological damage.
If that were your son's brain - wouldn't you want to take the risk of giving him a plant in lieu of waiting for the most invasive brain surgery there is for your toddler?
If that were your son - wouldn't you appreciate the Executives at your own child's hospital taking the time to respond to your concerns?
Please sirs. Change your policy on CBD. Please help my son.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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