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.
This is a long awaited post and more than a month overdue!! Things got busy and so much has changed in the last few months including the fact that Abram started pre-school in an integrated classroom with a one-on-one aide, he started and finished a 12 week MNRI program and began another one and we celebrated a huge milestone of being FIVE HUNDRED DAYS seizure free!!
Election Day marked this much anticipated milestone but of even more importance is the fact that in addition to the year-and-a-half of seizure freedom, Abram's Neurologist agreed to let us wean the last and final doses of his benzodiazepine from his system.
As I write this today, my son is pharmaceutical-free and seizure-free on cannabis alone. Please know that we did NOT do this on our own. We are very lucky to have a Neurologist and a Pharmacist who helped us along the way knowing when it was time to wean, how much to wean and what to be worried about. Weaning a benzo can CAUSE seizures so we were VERY careful about how we weaned this highly addictive medication and have been doing so since May of 2015. It was very slow going - only weaning .25 of a mL at a time and holding for at least two weeks before going down on the next dose. We also held the last wean for 6 months to ensure that he had no ill effects from it. So, if you are a parent hoping to be pharmaceutical-free - please do not do so unless your Neurologist is on board and if you are given a weaning schedule - do not hurry it. We were told how to wean and then we doubled the time because our son is so sensitive to things that we didn't want to trigger seizures or cause him any harm.
We finally weaned the last tiny .25mL dose (just .25mg of clonazepam) within three weeks last month and the only issue we have seen is a little bit of fussiness and NO physical seizures! This is a HUGE DEAL to my family and I can only hope that as Abram's body adjusts to having no benzos that it continues to be this way for us. Our son had words before the benzo worsened his seizures and caused him to regress so we are hopeful that he will once again be able to say "mama" or "papa".
In the 18 months since we started cannabis oil, our life as we knew it changed for the better. Our son is able to BE a little boy and he can now run, jump, ride an adaptive trike, do an 8 piece puzzle, string beads, stack blocks, he's learned about 50 signs (as he is totally non-verbal) and he's beginning to make eye-contact and engage in play with his classmates at preschool. We couldn't be more thankful!!
However, the Medical Cannabidiol Law in Iowa, the law that keeps us safe and free from arrest by allowing families like mine to posses this oil, expires on July 1st. I am hopeful that the Iowa Legislature will do the right thing this session by passing a meaningful piece of cannabis legislation that allows for access to this plant in Iowa to Iowans with a Medical Advisory Board. If you or someone you know could benefit from medical cannabis, please write to your legislators, senators and congressman and ask them for their support.
Thanks for reading this!
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.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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