Our daughter Kaitlyn is 5 years old. She has suffered from seizures since she was born but it went undiagnosed until she was 2.5 years old. We have tried many different seizure medications. She started to lose the mobility and intellectual capabilities that she had. She declined to the point of the only thing she was able to do on her own was breathe.
Our Minnesota neurologist had no other pharmaceuticals that he felt were safe for her. He recommended and supported us starting her on cannabidiol. Unfortunately the way the Iowa law is written we were unable to obtain our cannabidiol card so we ended up getting a CBD oil with no THC.
Over the course of the next 3 months Kaitlyn made drastic improvements. Her seizures were reduced, she gained the ability to walk again, she started talking again and many of the things she had become unable to do she started to regain the ability.
Although this oil helped Kaitlyn drastically she needed something stronger which we couldn't obtain because her Minnesota physician couldn't sign for our cannabidiol card. We then had to make the gut wrenching decision to leave our neurologist who knew Kaitlyn and treated the most rare and extreme cases of epilepsy to find an Iowa physician to start to establish care. We found an Iowa neurologist that was willing to take her case. He decided to try yet another pharmaceutical with Kaitlyn. This like all the other medications she had tried didn't help.
On January 23, 2017 her neurologist told us he was out of safe options of medications to prescribe for Kaitlyn. Her subclinical seizures (which are seizures her brain is having that you can't see) were extremely severe. More than 3 times as severe as when she had an EEG in May of 2016. The only option he was left with was increasing her lamictal but he was very doubtful that would help at all. He then agreed to sign a cannabidiol card for us to try this new option for Kaitlyn.
At this point, Kaitlyn has started to have drastic muscle loss on the left side due to how severe her subclinical seizures were. We started her on Haleigh's Hope February 3, 2017 after obtaining our cannabidiol card. Just hours after her first dose her private duty nurses were noticing changes with her. Her constant hand tremors were gone and haven't come back at all since her first day on Haleigh's Hope. She has since then regained all ability and movement of her left side. She is talking much more clearly, she can put multiple sentences together instead of just 1 sentence of about 4-5 words which was her "normal." She has become a more vibrant, happy and motivated little girl. Her sensory issues have drastically reduced and she is attempting things with textures she would have never done prior to Haleigh's Hope. She played in dirt for the FIRST time this past week.
We know that with whole plant medical cannabis Kaitlyn could drastically reduce or even eliminate the pharmaceuticals with harmful side effects that she is still currently taking.
This is Abram! He was born with a rare gene mutation called UBE2A Deficiency Syndrome. This gene mutation has caused him to have epilepsy, brain malformations including a pineal cyst and cortical dysplasia, autistic-like behaviors, absent speech, malformed kidneys (horeshoe kidney), hypotonia, diastasis recti, and an intellectual disability.
As a newborn, he never stopped screaming and we knew right away that there was something wrong with our sweet baby. At first he was misdiagnosed as "colicky" or having "acid reflux" but it turned out to be something far more sinister: subclinical seizures.
For months my son suffered from non-stop generalized seizures that were firing from one side of his brain to the other. He never slept, he rarely stopped screaming and then one day he stopped making noise altogether. The doctors told us not to worry - that he was simply concentrating on learning how to crawl.
Soon, he was globally developmentally delayed and just before his first birthday, they found a large pineal cyst in his brain and within months physical seizures began to present themselves including abscence and complex partial seizures. Genetics had no idea what all of his symptoms met but we were constantly told that what was happening to our son was the cause of a larger underlying genetic condition. We were relieved when we finally got our answer in December 2015 of an official diagnosis of a UBE2A gene mutation.
We got lucky as we had a Neurologist tell us about Cannabidiol pretty early on in his diagnosis. After a couple of scary hospital stays, we were told to go to CO to try it and eventually (after failing two AEDs) we obtained CBD and the rest is history.
Our son is over a year-and-a-half SEIZURE FREE on an organic cannabis oil from CO and is doing quite well. It has had surprising side effects including a major change in his Sensory Processing Disorder, he went from border-line failure to thrive to actually eating and being a bit chunky, his generalized seizures are now just independent discharges without seizures, his cognition has increased and now - at age 4 - he is in an inclusive pre-k classroom with a 1:1 aide and is finally able to BE a little boy.
My son's seizures are held at bay for now but as he grows, I worry that we won't be able to afford the oils at the ratios that are legally available to us with our current law. We still struggle with self-harming behaviors (head banging, punching, slamming himself around in bed) and we have seen these issues change immensely for children in states that have access to other cannabinoids including THC, CBN and THCa.
Our doctors should be making these choices for us, not our legislators. When you have a child with a medically complex issue, the medical professionals are literally learning from your family. We have joined Medical Research Programs at the Mayo Clinic, The University of Iowa and The University of Chicago because our son's condition is so rare.
If Abram's story of cannabis use helping his seizures due to brain malformations can help another little boy overcome the hardships of this diagnosis, our struggles and our fight to change medical cannabis laws is worth it.
Please let your Legislators at the state and federal levels know that you support medical cannabis and help us change these laws. There is always hope for families in situations like mine and cannabis happened to be our beacon in the dark.
You can follow his story here: http://ourabrammayhem.weebly.com/
Quincy Hostager, age 12, is from Des Moines and started having seizures in 2002 at 5 months. Quincy’s mom, Maria, owns a small business in real estate in Des Moines, and father Dan coaches at Drake University. Both went to Iowa colleges and have spent much of their careers in Iowa. They do not use marijuana or any illegal drugs.
Children in the US are finding relief from seizures from CBD-rich cannabis taken in oil or pill form. Some children and adults are finding seizure-control from cannabis that contains higher THC. Five children in Australia are seizure-free from a cannabis tincture that contains THCa. For faster rescue medication or to stop seizures, parents are vaporizing the cannabis or rubbing the tincture on the children’s gums.
The US Government filed a Patent on cannabis called Cannabidiol! US Patent 6,630,507 as Antioxidant, Antiinflammatory, Neuroprotectant, good for Alzheimers and Parkinsons.
Quincy developed normally until age 2—he lost the ability to talk and walk after 4 doses of Depakote, a common antiepileptic. He spent 10 days at Mayo where they gave him versed, Ativan, morphine, Topomax, and performed extensive testing. These drugs only caused further seizure activity and suppression to his central nervous system. He relearned to walk after a year, but still hasn’t spoken.
Quincy has tried and failed over 20 Antiepileptic Drugs, including high-dose dangerous Steroids, high-fat Ketogenic diet, he has had surgery for a pacemaker, the Vagus Nerve Stimulator (VNS), IVIG transfusions, Dangerous non-seizure drugs (morphine, beta blockers, dopamine, baclofen, Zoloft) He wears a helmet, and spends a lot of time in the wheelchair due to seizures and weakness from his current drug, Vimpat.
Quincy’s family is trusted with controlled substances and they have never fallen in the wrong hands. Prescription Drug FDA approved side effects: liver or kidney damage, ataxia, aggressive behaviors, constipation, muscle weakness, nausea, weight-loss, vomiting, kidney stones, vision problems, extreme insomnia, dystonia.
Cannabis side effects: sedation, short-term memory issues, a feeling of relaxed euphoria (decrease in motivation), and appetite increase. Israeli and other governments provide cannabis to patients for free. If Quincy lived in one of the US 28 states where it was legal, he could use this without fear of criminalization.
My name is Patrick Loeffler. I'm 50 years old and I have Intractable Epilepsy. I was diagnosed with epilepsy 3 years ago but I truly feel it's something I've had all my life. Since my grand mal seizures have started 3 years ago I have tried 5 different seizure medications with varied results. I have had some of the worst side effects you can describe known to a man. By saying I have had Epilepsy all my life I mean I have been undiagnosed my entire adult life. My recreational love and usage of Cannabis was for good reason. My life.
My recreational use was actually self medicating unknowingly. 9 years ago I received a new job of authority. I truly stopped recreational smoking and that's when my issues and seizures became prevalent. I was having a seizure from the right side of my brain and it was then stopping my heart. 12 different times, with 18 seconds being the longest pause. The next day was my pacemaker. Then the Mayo Clinic was able to determine my seizure was stopping my heart after that.
Going through the 5 different seizure medications led my Neurologist to recommend me a CBD Oil card. Great! Only problem, I cannot get the CBD Oil that controls my seizure activity in the state of Iowa. I have been using a CBD Oil that I acquire that is a 3:1 ratio. 3 parts CBD and 1 part THC.
To date I am off 2 heart medications, 2 diabetes medications, 5 different seizure medications, down 90 lbs, driving myself and I have my quality of life back. I attribute this entirely to my education, respect and medical usage of Cannabis for my quality of life!
Revelations 22:2 "....and the leaves and trees are for the healing of the nation."
This is Autumn! Autumn is almost 4 years old and had a traumatic birth that lead to brain damage which has caused a seizure disorder called Lennox-Gastaut Syndrome (LGS), spastic cerebral palsy, microcephaly, vision and hearing impairments.
Autumn has been taking CBD oil for 2 years. Since starting CBD oil Autumn is less spastic, no longer has week long crying spells where she would cry 240 hours, she is happy, learning, her vision and hearing are improving and she is saying mom!
I have used her CBD oil to treat an ear infection that typically requires her to be on strong antibiotics. The oil cleared her infection up in 5 days! I have also used her oil to treat a pressure sore on her heel that should have taken months to heal but only took 3 weeks !
Autumn has always been on multiple seizures meds. I am currently weaning her meds hoping to get her pharma free! She has successfully been weaned from Keppra which she had been on since birth! Her next wean will be Topamax. Without CBD oil Autumn would still be a crying zombie with no quality of life! Thanks to CBD oil I now have a happy, active, full of life child!
Caleb is 12 years old & has intractable epilepsy. He has tried over a dozen FDA approved medications & nothing has completely controlled them.
Caleb has been taking CBD oil since September 2015, he receives the oil through a study he is in through university of Iowa children's hospital.
Since starting the oil Caleb's everyday head drop seizures went from 10/day to none. He still has the occasional grandmal seizures. Caleb's development has improved. He's more aware of his surroundings, more alert & very happy. His overall life has changed for the better due to CBD oil.
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.