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.
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.
I think many of you can recall the mad dash I was making last spring and summer to be able to obtain CBD legally for my son, Abram. After having very scary and serious side effects on the pharmaceutical drugs Keppra and Klonopin, we had decided to pursue CBD as an option (at the urging of our Neurologist) however due to Unity Point's stance on CBD - he was unable to help us get the Cannabidiol Registration Card.
At that point, I began my fight: both for my child's health care and diagnosis and for his personal freedoms to try cannabis as a treatment option. I wrote to every single Republican Senator as well as every single Representative in the Republican House (but that's another post entirely).
I must be honest in saying that as a mother trying to fight for her child's rights - it is very disheartening to say that out of 24 Iowa Senators - only 5 have ever responded to my concerns and questions regarding my son's healthcare and his rights as an Iowan and an American. As a parent with a special needs child, I should be spending my son's nap time as my own down time but instead I sit in front of this computer tapping away on the keys begging for anyone and everyone to LISTEN.
When I began writing to the Senators and House Members, as a mother sharing Abram's story - my son's story has changed immensely. First, he was a little boy needing legal access to CBD and I was begging for help since our city's own Children's Hospital was not helping us gain legality. Now he is a child who is TWO HUNDRED AND FIVE DAYS SEIZURE FREE and I am a mother who finally holds a Cannabidiol Registration Card in her hands today. However, they need to realize that in order to get the card, my son had to endure another MRI, a spinal tap, numerous meetings with geneticists, genetic researchers and medical researchers who were trying to help us. My son finally has a diagnosis that is incredibly rare and the only other family world-wide who shares this same mutation lost a child at age 11 to an epileptic seizure. These facts make me worry, make me squirm and make me realize even more WE NEED ACCESS NOW.
So here I am, over 100 e-mails deep just to our Iowa Senators to which only five of whom responded to my concerns. My issue with writing to our state senators is this: If you have a health issue like my son's - they don't want to hear about it unless you are in their district. I hear time and time again that I need to contact my own Representative (I already have) and to contact my own Senator (he's been to our home and met my family in person).
Health concerns of a toddler is not a "district issue". It is an Iowan issue. It is an American issue. It is also a world-wide issue and phenomenon that we are dealing with. Once again, my zip code should NOT dictate if my son's story is worth responding to.
I have a friend whose child suffers similar issues to Abram and her family was DENIED access to the Cannabidiol Registration Card because her Neurologist resides at a Level 4 Epilepsy Unit out-of-state. So, despite the fact that he is the best-of-the-best in the country and supports the use of cannabidiol, that physician is not counted due to the fact that he is not an Iowan Neurologist. How is that fair? When you have a child who has rare diagnoses like many of Iowa's most fragile constituents, you are also going to be punished for being forced to get care out-of-state because our own hospitals aren't equipped or are unwilling to help our children?
My son is 205 Days Seizure Free. (My son was healed illegally for 163 of them.)
I am not a criminal. Please quit making parents choose between being lawful and being a good and present parent. Most importantly, please, take the time to respond to the parents of suffering children in your state. Please stop making children wait. We need action from you.
Many thanks to Senator Brad Zaun, Senator Charles Schneider, Senator Jake Chapman, Senator Tim Kraayenbrink and Senator Michael Breitbach for taking the time to respond to my concerns. Your time and attention to this matter is greatly appreciated.
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.
Hey Everyone! We hope you had a safe holiday weekend. It was wonderful for us as Abram didn't have therapy or doctor's appointments for the first time in years. It was wonderful! We didn't do much but cook delicious food, spent time with our family and did a lot of swinging and playing with firetrucks.
He is officially over the 150 days seizure free mark and doing well in all of his therapies. His goals with his Speech Language Pathologist have totally been revised, we are learning new pressure point techniques with his Occupational Therapist and his Feeding Therapist is getting ready for him to work with and try an entirely different food group. We just finished up with "red" food. I'm curious to see what will be next?!
Epilepsy Awareness Month is officially over today but it came to a bitter-sweet end as a little article I wrote got published in the Cedar Rapids Gazette. You can read the full article, here.
We don't have much else to report because the last week has been a fantastic reprieve away from the reality of therapies and appointments and a lot of time driving back and forth to all of it. The weather is starting to turn which always makes winter driving more difficult but the outcome is so worth it. We even interviewed with ChildServe today (where Abram gets the majority of his therapies) and they will be doing a story on Abram and his success with walking! One year ago, Abram wasn't independent at all and now he is practically running.
Time flies. Life is Good. Enjoy your December!!!!
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
Hey there Everyone!
I'm feeling scared lately. I had been asked to do a story on the News - just sharing Abram's story from the start and how hard it has been to first and foremost - get proper medical care for a child that is so very medically complex and lastly, having legal access to a medicine that he needs so badly. I chickened out on doing the story after getting advice from other parents/advocates in other legal states.
I have written every Iowa Senator twice and have only gotten a few responses. I have written every single Iowa House Member twice as well and have started down the long line of calling home phone numbers (don't worry - they are posted publicly on their own website and completely legal). Most don't return my phone calls either.
I have spoken with US Senator Grassley himself, I have spoken with US Senator Joni Ernst's Regional Director (still waiting for an official response from her) and I have met with the Iowa Governor's Health Advisor since the Governor is entirely too busy to meet with a worried mama regarding a bill he signed himself.
I was told by the Governor's Health Advisor to reach out to the Iowa Department of Health who were by the way, absolutely sympathetic with our story - as is most people who hear it - but the law is the law and there is no way to get a Registration Card through the back door as I was led to believe. Yesterday was a hard day after several phone calls and exciting prospects only be be shoved back in the mud.
I'm trying but I'm getting the steam knocked out of me. Only 72 people have been issued cards in our state. That is not many people getting help compared to the large amount of money our state spent on implementing said cards. And when you realize that of those 72 cards - most of them are probably care givers over actual patients. The fact is - when you sign up for a card - you also have to sign up anyone and everyone who would need to be able to administer the medicine. So for our family - we would need 3 cards just for us. However, that isn't even counting any of his care providers like Respite or SCL who can administer psychotropic drugs like Valium to my child in an emergency without needing such things in place. My son CAN NOT overdose on a medicine like CBD but we have tubes of Emergency Meds that are considered controlled substances that could kill him if he were overdosed on them and no one blinks an eye. How is it that people are MISSING THIS?!
Being vocal about this is scary. Being open about it is scary. I backed out of the News Story out of FEAR. Fear that someone will take my child away. Fear of being thrown in jail for doing what is right. Fear of having his medicine taken away even though one of the Country's Best Hospitals who have a Level 4 Epilepsy standing back and support it 100% and I have proof of that within his own medical records.
I'm sad and I'm frustrated and I want to do the right thing. Standing up for what you believe in has been such a vital role in my life - my whole life. Doing that is right is scary. My son is seizure free and that is what matters the most. But the story that goes with it..... matters. He is not just a "sympathetic story" as Gov. Chris Christie claimed when CBD was brought up in the Republican debate weeks ago. My son is a boy. A human. A child. My baby. My LIFE. My absolutely everything.
And to think that me standing up and saying "Hey... our own Hospital and Physician betrayed us, the law isn't working for us and no one is helping." can land me in jail just because I said it publicly is horrifying.
I've tried my hardest to do the right thing and play by the rules. I have written so many emails when I could be relaxing or reading a book. In my downtime, I am pleading for help from anyone who will listen. I don't get to relax or have "me" time because I am always having to fight for my son's rights. When you have to fight so hard just to get good health care - only to turn around and have to fight for his medicine - it is hard not to get angry.
Change needs to happen and it needs to happen now. For him. For you. For your kids. For all of us.
Hi! I'm Erin. I am a single mom, tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.