Abram is TWO YEARS SEIZURE-FREE on cannabis oil and it's been 7 months since we weaned the last pharmaceutical from his body. Back then, our family hit our rock bottom after traditional pharmaceutical drugs not only failed - but further harmed our son. We had physicians telling us that our son's condition was "over their head" and eventually pointed us in the direction of Colorado and Cannabis. Since then, we have learned an official diagnosis of all his symptoms: UBE2A Deficiency Syndrome, a rare genetic condition that affects only boys and of which there are under 40 reported cases in medical literature worldwide. We also discovered that the fundamental cause of Abram's seizures and intellectual disability are due to a congenital abnormality in his brain called cortical dysplasia. We spent the first three years of his life in and out of emergency rooms, had numerous and lengthy hospital stays due to seizures, pushed for therapies and fought tooth and nail for something (anything!) to go right for Abram. He suffered immensely as an infant - always seemed to be in pain, never slept and was self-harming as soon as he was strong enough to get up on all fours. He was written off as a "colicky baby" and I - "a worried, first-time mom". To the parents struggling out there: trust your instincts and NEVER be afraid to tell a doctor NO or get a second (or fourth!) opinion. After we started Haleigh's Hope: we have had zero hospital stays due to seizures, we have had NO ambulance rides, we have weaned all of his pharmaceutical drugs and Abram was able to start pre-school in an integrated classroom. Every appointment since we started using cannabis has been a major improvement. The cystic lesion in his brain has stabilized, his kidneys are functioning perfectly, he is finally ON the growth chart (and even a little chunky when before he was way too little). He's grown over 4 inches in the last year when our Endocrinologist had actually encouraged us to do growth hormone shots just a year ago (to which we declined - as both his parents are short and his condition includes short stature). But.... he GREW. He's on the charts. He's also saying "MAMA" after having lost it to Klonopin and seizures over two years ago. He has worked SO HARD and I have waited so long to hear his sweet little voice say my name and there is absolutely no question in my mind or my heart that cannabis is the reason for all of his improvements. (Well, cannabis and our dedication to outpatient therapies every single week for four years!) My little boy can run, ride an adaptive bike, jump and play - all thanks to a plant. Cannabis gave us hope when we had none and we will forever be grateful to the people we have met and the journey this crazy ride has taken us on. Having a child with a rare diagnosis and special needs can be isolating and scary but Abram has shown me a world filled with love, determination and kindness. He has led me to an entirely different life and I couldn't be more thankful for it. This little boy was put on this Earth to teach me how to love, forgive and fight hard for what I believe in. Before Cannabis, he had a lifetime of being told what he wouldn't and couldn't do and now he proves everyone wrong! He continuously improves his goals and smashes them to smithereens. Abram is my own personal little hero - proving to me everyday that there is always hope, love and lots of hugs if you know where to look. To Jason Cranford, thank you so much for creating something that is changing so many lives for the better and for giving me my son back! Much love, Friends. We couldn't be luckier or happier. Cannabis IS medicine. What we use for Abram:For those of your curious about what kind of cannabis oil/products we use for Abram, we use an organically grown from Colorado called Haleigh's Hope that is c02 expressed.. We also added in Cannatol RX last summer to try and help Abram with his self-harming issues and restless nights. With Haleigh's Hope, Abram became seizure-free and cognitively way more aware but we still struggled with major behavior issues. Before we added in the Cannatol, Abram would sit in his bed and night and slam his body around for up to two-three hours and slam his face and head into his crib slats. When he got startled or upset he would slam his face into the floor, concrete, an end table - anything that was near. He most recently lost a tooth due to damage he did to it over a year ago but the Cannatol RX has helped immensely with his difficult self-harming days and his sleeping. Since the video below, we have also gotten a Courtney Bed so if/when he does bounce around - he is at least safe and cannot bloody or bruise his head anymore. When we first started our journey - we did not know what we were doing and we used a product that we later found had lead in it. Then we met Jason Cranford and our lives changed for the better. I've learned a lot and his team that work for his non-profit the Flowering Hope Foundation have spent countless hours teaching me about cannabis and how to best advocate both at the state and federal level. Sebastian Cotte is their National Business Director and he has helped me immensely by teaching me how to advocate and how to speak with my Senators and Congressman in Washington DC. The best part? Haleigh's Hope also has a private group where you can meet and chat with other people about what you are going through and who are using the same products. The staff teach you how to dose and what medications could possibly interact and how to approach your doctor with knowledge and confidence. If you are thinking of trying "cannabis oil" - please be sure to purchase a quality product for your loved ones. We get messages often about how certain local drug or grocery stores have "CBD OIL" but I always let people know that not all products are the same. Before using anything - be sure that each bottle has a batch number on it and labs that match and prove that the product is safe and free of harmful contaminants like pesticides, mold and heavy metals like lead. We personally only trust the products that Haleigh's Hope and Cannatol RX make. We have been able to personally meet the people who have helped my son have a better quality of life and see where his medicine is grown. I like the personal level of care that you get with Haleigh's Hope/ Cannatol and how they help people in their darkest days see the light and HOPE that is offered in their oils and sprays, literally. I originally titled this piece "Seizure Free on Cannabis" not thinking that I should share the exact thing we are using as people could blindly go buy bad product and never see the results that we see. I do not want to further perpetuate that all oils are the same or have people believe that they can go to a health food store or a vape shop to get these products. They are NOT SAFE, friends. Please, be careful with what you choose to put into your child's and your loved one's bodies. We decided on an organic c02 expressed product because that is what was best for Abe. Haleigh's Hope and Cannatol RX are specifically what changed our lives and everyone should know what has given us our boy back. Thank you, Jason Cranford for all you do for our kids. Abram was featured in June's "CULTURE" Magazine in an article titled "Abram's Biggest Advocate". You can read it online here and I will paste the article below as well. Many thanks to Jamie Solis for asking to learn more about Abe and for sharing his story!
It is written as pasted below: Abram’s Biggest AdvocateErin Miller Discovers the Healing Properties CBD Oil for her Young Son’s Rare Condition When Erin Miller first brought Abram home from the hospital, she knew something was wrong. Her newborn son was inconsolable and screaming constantly, however his doctors were not concerned about Abram’s behavior. At 10 months old, Abram got sick, which led him to seeing a new pediatrician who instantly noticed something wasn’t right. Abram was referred to a neurologist, who found a cystic pineal tumor. This type of tumor is dangerously located on Abram’s pineal gland in the middle of his brain. Erin explained, “The brain surgery is so dangerous, they wanted to wait for worsening neurological symptoms before they would perform surgery. We were warned the tumor would cause seizures, so when Abram started having seizures, we thought it was because of this mass.” “Right after the very first dose, he stopped signing ‘ouch.’ For the two weeks after that he had maybe two absent seizures where he would just kind of stare off, and then they were gone. He hasn’t had a physical seizure ever since.” Abram’s seizures started around his first birthday in June 2014. By October, his seizures took a turn for the worse. Abram was diagnosed with a generalized seizure disorder and epilepsy, and he was prescribed Klonopin. Erin said, “The first month on Klonopin was awesome. We were really excited because he fed himself for the first time with a spoon. It seemed like it was going in the right direction. But then suddenly he started having more seizures, different kinds of seizures, worsening seizures, and the more the seizures came, the more Klonopin they would give him.” At just two years old, Abram was taking more Klonopin than most adults are prescribed. Erin recalled, “I found out later that Klonopin had never been tested or approved for kids under 18.” While Abram was on Klonopin, he lost his words and ability to walk or crawl. His symptoms worsened over time, and Erin brought him back into the ER. The following day, his regular neurologist admitted that Abram’s case was over his head, and the family would be referred elsewhere. Before Abram was moved to a level 4 epilepsy hospital, Erin recalls the neurologist’s life-saving recommendation, “Our neurologist came in and was whispering, ‘You guys need to go to Colorado, and you need to try cannabis.’ Even though I was really angry with him for not knowing how to help Abram when I felt like he should have been helping, I’m so grateful for him telling us to try cannabis oil, because that is exactly what helped my child.” “Since they’ve started cannabis oil one year ago, Abram has been weaned off three-fourths of Benzodiazepines, and they have one milliliter of Klonopin to wean.” Once they were transferred to a specialized hospital in Minnesota, Erin hesitantly inquired about cannabis for her son. Instead, doctors prescribed Abram with Keppra. Abram’s side effects were terrible and B6 was added. This resulted in 14 days straight of Abram screaming constantly and even ripping his hair out. Erin realized cannabis oil might be Abram’s only hope. Although CBD oil is legal for medicinal use in Iowa, the state doesn’t have dispensaries. Erin explained, “My only choice was hemp that could be shipped. I ordered Charlotte’s Web Oil. The first day I finally decided to do it, he was hitting his head and signing ‘ouch.’ Right after the very first dose, he stopped signing ‘ouch.’ For the two weeks after that he had maybe two absent seizures where he would just kind of stare off, and then they were gone. He hasn’t had a physical seizure ever since.” June 27th marks Abram’s one-year of being seizure free. Around Christmas Abram switched strains to Haleigh's Hope out of Colorado. After this change, he started giving kisses for the first time. Abram also started laughing, giggling and making more sounds. Since they’ve started cannabis oil one year ago, Abram has been weaned off three-fourths of Benzodiazepines, and they have one milliliter of Klonopin to wean. “We actually saw his neurologist last Monday, and I told him, ‘I don’t want him on this Benzo anymore. I want to see what happens if we take him off. I feel like that is what took his words. Maybe if we take him off of it, maybe he’ll get his words back.’ Crazy enough, his neurologist agreed that in November, once he hits the 18 months seizure-free mark, he is willing to have my son on cannabis only.” Abram’s “official” diagnosis is UBE2A X-Linked Syndromic Intellectual Disability or UBE2A Syndrome for short. Although this condition is super rare, as the Millers are only the third family in the world to have this particular spontaneous gene mutation, Abram’s story is making a huge difference in the lives of countless others. Erin is part of a group called concerned Iowans 4 Medical Cannabis, which gives Erin the opportunity to advocate for all children and adults in need of medical cannabis. Today is like a new birthday for Abram... as it was one year ago now that we took a leap of faith and began using cannabis oil to treat our son's seizures.
With his diagnoses: UBE2A, pineal cyst and grey matter heteropia/cortical dysplasia he will never have a normal EEG nor is he "cured" of his Epilepsy. (I'm only stating that so people don't confuse his current success with not needing to worry anymore because Epilepsy is a cruel beast for which there is no cure and we must always be prepared!) However, we have been given a great gift. We have been able to see our son thrive and grow. We have been able to wean over 3/4 of his last Benzo. We have changed minds and maybe even a hospital policy. We have fought for law changes and have met our local Representatives, U.S. Senator and Congressman to tell them our story in hope that it helps change their mind so they help other people too. Abram has come a long way physically and cognitively. He's giving us kisses, making sounds, growing like a weed, becoming social (and BOSSY!) And he's finally able to just BE a little boy who loves kitties, fire trucks and who thinks farts are hilarious. If and when another seizure strikes, I know that we have amazing support because this journey also brought incredible people into our lives whom we never would have met otherwise. Cannabis oil gave Abe a quality of life we never knew existed. I never expected to be here. I had no idea I would have to fight for law changes to get a medicine our sons doctor felt was best, yet here we are. Abe has taught me so much and brought so much love and light into my life. Happy Seizure-Free Birthday, Bubster! In another week you turn 4! Mama loves you so much!!!!!! We use Haleigh's' Hope and it has changed our lives. I had the honor of being able to share Abe's story and a little about what went on in Iowa during the last legislative session. You can listen HERE. My opinion piece got published in the Des Moines Register today. I am beyond elated that it got such a huge piece of the Sunday paper. What an honor. You can read it on their website here or in the text below. "Imagine having a child with a diagnosis so rare that genetic researchers in three states ask your family to participate in medical research because they are officially learning from your child. Imagine having a child with neurological storms that no one caught until permanent brain damage had already been done. Imagine having a child so sick that the doctors you trusted come to your child’s hospital bed and tell you that they don’t know how to help you and have to send you elsewhere for help. Imagine being pulled into a private room and being encouraged to try cannabidiol. Imagine being so desperate to help your child and worrying if doing what is best for your child will make you a “criminal.” When you have a sick child, you find yourself in a battle to find the right team of specialists that can best manage their particularly rare set of circumstances. We never imagined we would have to fight for our child’s legal right to have his medicine. Especially when the recommendation came from his neurologist. Our situation in Iowa is hypocritical and cruel at best. My zip code should not dictate what medicines my child can access, nor should it dictate which representatives respond to our needs. My family should not have to concern themselves with breaking federal law to get a medicine that Iowa law says we deserve. Yet, many of our legislators continue to block access to cannabis oil. It is insulting to sit in a public hearing and listen to the testimony from Drug-Free Iowa, who worries more about the potential abuse of teenagers on a cannabis oil (which doesn’t even have enough THC in it to get a toddler "high"). Yet, my son is prescribed a benzodiazepine that is one of our country's most abused and deadly prescription drugs. I can go to my pharmacy to obtain benzodiazepine, an “FDA-approved drug,” which was prescribed to my child off-label. My son was given a drug that has never been approved for children. According to the FDA, benzodiazepine’s “adverse side effects on mental development may not become apparent until many years later.” Yet, I cannot legally obtain a natural organic substance patented and proven to work by the U.S. Department of Health and Human Services (Patent 6630507), which has no side effects and is nontoxic in high doses. The hypocrisy that lies in all of this is astounding. I’m a mom doing what my son’sspecialists told us was best for our child. Iowa's lawmakers have no place standing between patient-doctor relationships. I am not afraid of medical cannabis. I don’t have to worry about detrimental side effects, unless you count my son as being 243 days seizure free a “harmful side effect.” Cannabis has given my son a quality of life he has never known. He is learning how to ride a trike, do puzzles, he can walk and run and he is learning how to communicate. Cannabis has given my son the gift of finally being able to be a little boy at 3 ½, after a lifetime of suffering. It has given my son and my family our lives back. It is time for our legislators to stand up and do the right thing. Yet, the legislators who need to hear this are the ones refusing to come off of the House floor to speak with or respond to emails. It is incredibly frustrating that those who are supposed to speak for us don’t even listen or respond to those they are elected to represent. Iowans need to take note of who is telling their fellow sick and suffering neighbors “no” and vote accordingly this election season." 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. Sincerely, Erin Miller 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. Sincerely, 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: policy 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. All parents have their breaking point and last Wednesday, I had mine.
We'd been gone for 8 days for our trip to the Mayo Clinic for their Diagnostic Team and my son had had enough. I had had enough. We just got home from a nearly 4 hour car ride where my son whined nearly the entire way and it'd been more than 48 hours since either one of us got some sleep. My father had finally urged me to put him down for a nap and for me to do the same. So, I put Abram down in his crib, made sure we did our normal routine of sound-maker, lavendar lotion back-rub and crib soother. Plus - the almighty blanket fluffing. But he just started to cry. I figured he was just over-tired so I went into my closet - to CRY. I just couldn't handle it anymore. Then I heard him screaming. An awful scream. And I ran in there to find my son had screamed so loud and so hard that he'd made himself projectile vomit all over himself, his bedding, through the crib slats and all over the floor. I yelled up the stairs to ask for my parents to help and my mom came running to clean him up while I changed all his sheets and scraped vomit off his pillows. We got him put back down and he fell right asleep while I fell into a heap on the couch and just BAWLED. I felt like a horrible mother. I felt like a failure. I felt lost. I felt alone. And I felt ANGRY. Since the day my son was born we have had to FIGHT. We had to tell the Nurses his lips and fingers were purple. We had to tell our Pediatrician - and another and another that SOMETHING WAS WRONG before anyone would listen. I KNEW he was having seizures before the "professionals" even agreed with me. When you have a sick kid you lose everything: Your friends who you thought would always be there. Your family who just don't understand so they don't bother to say anything. Your faith in people and doctors and even the universe. It is HARD and no one gets it except for the people who live it. At Mayo we were treated with Dignity and Respect. My old videos that I showed for seizure examples were confirmed as just that. When my son was collapsing and our local doctors turned us away and told us they couldn't help us and shipped us off.. it turned out that they were overdosing my child on a benzo. Those collapsing spells weren't new seizures - they were a side effect of TOO MUCH MEDICINE. At Mayo, we were NOT frowned upon or shunned for giving our child CBD. At Mayo, we weren't told that we needed to add yet another harmful pharmaceutical with a myriad of dangerous side effects to our toddlers medicine regiment. Does that mean it will always be so? I don't know. He has EPILEPSY. Our pediatrician said it best when she said "I can't tell you what the next year will bring you. But I can tell you it's not your fault". In Iowa:
Today, when speaking with US Senator Charles Grassley - I admitted that although I tried my best to follow the law here - and went through all of the proper routes - I was unable to obtain the Registration Card for my son. Due to that reason, I was forced to do what was best for my child and that I was happy to report that my son is nearly three months free of physical seizures. I did not get a congratulations. Or an "I'm happy to hear that". Instead I was quickly dismissed to another one of his advisors who talked to me about all the things that Grassley is doing to try and change things but that CBD cannot be rescheduled until there is more "research". I reminded him that such research would not be able to be done UNTIL they rescheduled CBD as a Schedule II drug - due to the fact that it is illegal at the Federal Level - no research can be done until that happens. I got a chuckle and a bad joke about "The Chicken and the Egg" metaphor. In light of the need for "more research" I asked specifically how it is that the United States Government and the Department of Health can have a Patent 6630507 for "Cannabinoids as an Antioxident and Neuroprotectant" and that their own document states clearly that cannabinoids "are substantially non-toxic even at very high doses" To which he laughed and said "We are Congress not Scientists". Imagine now - if this were your child. Suffering from Day One and as a parent - being forced to be a "criminal" because Doctors, Hospitals and Politicians don't have the guts to stand up for what is right. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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