We are seeking help for our 12 year old daughter who suffers from intractable epilepsy (and autism). She has run out of treatment options and her neurologist has now had medicinal cannabis oil prescribed for her. But we were forced to put her in residential care in September as we were not able to get the help required for her 24 hr care at home. The only option for residential care for youth in NS is through Dept of Community Services so we were forced to place her in Yarmouth with YACRO.
Dept of Community Services will not allow her to be treated with cannabis while in their care and are forcing us to bring her home to receive treatment. We are devastated, don’t know what to do and fear her time is running out. She is at high risk for injury and death as a result from her seizures.
We are seeking signatures of support from our community, other parents in similar situations and ultimately from our country. This petition will be sent to the Prime Minister (as well as all related political parties) and to the Minister of Department of Community Services.
Please read our full story below-
Despite doing everything right, our daughter was born with multiple brain abnormalities (arachnoid cysts, polymicroyria, and grey matter heteratopia). These abnormalities cause multiple forms of epilepsy. She also has autism, sensory processing disorder and other behavioral disorders. By the age of 3yrs, the doctors had her on multiple drugs. All had very serious side effects and every anti-seizure drug causes behavioral problems. Every behavioral med causes increased seizure activity. It is a viscous cycle that has seen our daughter on more than 15 drugs. She has lost cognitive growth/function, the ability to carry on a conversation (she is verbal but is mostly limited to repetitive/mimicking speech). She has lost tooth enamel, bone marrow, hair, bladder function, and more as side effects of these medications. Most of her life so far (13 years) has been spent seizing, sleeping or screaming. But we did what the doctors told us to do. We kept drugging her.
When she turned 7 I started doing more research on all these drugs. Educating myself. It was nearly a full time job. What I discovered terrified me. My daughter was really just a guinea pig. A lot of the drugs she had been given were not even approved for pediatric use and/or were being used off label. I started looking for alternatives. But due to her cognitive impairment and oppositional defiance disorder most therapy was un-successful. It was at that time that I learned that medicinal cannabis was being SUCCESSFULLY used to treat otherwise un-treatable epilepsy like our daughters. It was even showing promise to ease the symptoms of autism. This was a plant that I knew and understood! No chemical poison. Could it help our child? I set out to find out but hit wall after wall with her doctors.
By the age of 11 she was unable to attend school at all (her attendance before then was spent mostly alone with her EA or in a “time out” room). I could not watch her suffer any more. I started to wonder what was under all the drugs? What WOULD our little girl have been like if we had told the doctors NO, if we knew then what we know now. So I decided to strip her off all meds. With each medication she was weaned off, we found more of our sweet little girl. She blossomed cognitively! Started asking questions and carrying on conversations! She ate, and slept and was full of energy! (OK a little too much energy I admit). But best of all (and scariest) was that she was SEIZURE FREE for 3 months. The seizures did return but no longer were they life sapping 45 minute terrors, they were very brief (less than 10 sec) and off she’d go back to normal activity. We were delighted!! But then school started and they were not so impressed. Due to her high energy and flight risk she was deemed “un-manageable” .
For a year we did our best to juggle her daily care and our jobs. I took her to work with me most days. Both of our businesses suffered and we were both getting exhausted. Our younger son was raising himself. Our daughter’s newly acquired cognitive skills made her far more clever and manipulative and her speed meant if she got a 2 min head start you better grab a vehicle to catch her. More than ever she required 24hr supervision from a very fit athletic person. The couple respite workers we had managed to hold onto over the years could no longer do it. With just my husband and myself to shift off, we were quickly getting exhausted and burnt out. Our son was getting a chip on his shoulder (who could blame him?) But she was so happy and healthy we were scared to go back to how it was. Left with little choice we asked our social worker for help. She had been suggesting residential care for many years. We refused to consider it knowing the only option in our province is voluntary care placement in a Community Service Small Option home (group home) and that there are only 4 in the province. It is a 2-5 year wait for a spot even once you are desperate enough to seek help.
But a day came that made me realize that I could no longer keep my daughter safe at home. She was putting herself and others at risk with compulsive flights from home. We finally agreed to seek residential care. Amazingly, we were accepted almost immediately. We tried to take comfort in it meaning that it was what was meant to be. But there is no way to ever describe the anguish the decision and the actual act of moving our daughter, at age 12, to a group home 3 hours away. Shared with 3 other children (2 of which are BIG strong males who have similar behavioral issues). She adjusted amazingly well. Me and her father-not so much. It is HELL being so far from her. Not tucking her in every night. The 6 hrs of driving to bring her home with us every weekend. The heartbreak of sending her back every sunday.
Since going into care, she is now on 3 medications. One does help her behavior some, one does nothing that we can tell (and is suppose to be for blood pressure not behavioral issues) and the anti-seizure medication she has been put on has increased her current seizures 10 fold, made them so intense they literally fling her to the floor violently and cause her to urinate herself. It has also cause her old seizures to come back. And increased behavioral problems. We had only agreed to a one month trial because we knew we would never be allowed to try the medicinal cannabis if we didn’t exhaust all pharmaceuticals first. (of course had we known how bad it would go we would have never done it). It was clearly apparent to her whole team that the Keppra had to be stopped. But sadly her doctor weaned too quickly and caused her to have a grand-mal seizure. A meeting was called and we finally convinced her Community Service team to approach her neurologist one more time to consider medicinal cannabis. Her neurologist agreed and referred her to The Cannabanoid Medical Clinic in Halifax where she was seen by a licensed doctor specializing in cannabis use. He had no hesitation in giving our daughter a prescription after looking at her medical history. After 5 years of battling for the right to try it, we thought we would finally have the chance. Our family, friends, and all of our daughters support team are behind us 100%. But the Department of Community Services ruled against it and will NOT allow it to be given while in care, forcing us to make the decision between our daughters health and her safety (not to mention our mental health and our sons). They tell us we must bring her home if we wish to pursue this treatment. Sadly, we do not have supports available for us to do so.
So I have created the petition to show the overwhelming support of people in favor of ALL children, including those in care of the province, to have access to alternative medicines such as medicinal cannabis when prescribed by a licensed practitioner. Please help us by showing your support.
This could mean life or death for our child as she is now having upwards to 10 seizures a day and has had 8 grand-mals in the past month. She may not survive the next. We want her weaned off the meds that are harming her and given an honest trial of cannabis oil, the same as we have agreed to for all the other drugs given to her over the years.
A devastated mother
““We’ve introduced a dozen new drugs in the past 20 years, but it’s not clear we’ve made a significant advance in the treatment of drug-resistant epilepsy,” says Dr. Orrin Devinsky, head of the Comprehensive Epilepsy Center at New York University. “We have failed as a scientific and medical community.”-Time Magazine
“”Some of these parents are hoping pot can help where mainstream medicine has failed. Epilepsy costs individuals and institutions $15 billion a year. It is far more common than autism, multiple sclerosis or a host of other neurological disorders. And it kills more Americans every year than breast cancer—and yet the disease receives just 20 percent as much research funding from the National Institutes of Health. What’s more, a third of people with epilepsy have an intractable drug-resistant type.”-Time Magazine
- Prime Minister
Minister of Community Services and Prime Minister Trudeau
- Minister of dept of community services
- Minister of Health Leo Glavine kings