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As a baby, Alice was having up to 30 life threatening seizures a day and her neurologist told me “It’s like your baby’s brain is exploding – take her home to die, she is too sick to live”.
Over the last 9 years I have had no choice but to become a nurse, a doctor, a scientist, my own research assistant, a political lobbyist, and much more. Across the world it has been unanimously agreed that the life threatening seizures of children with CDKL5, like Alice, cannot be controlled by any current pharmacologically available anticonvulsant medication, diet, surgery or other intervention.
So I have had to watch my daughter suffer; she stops breathing, she bites her hand, nearly severing fingers, or she bites her tongue, knocks out teeth, often covering us both in blood. When Alice becomes conscious she screams in fear and looks into my eyes with indescribable terror. There is nothing I can do but stay with her, talking to her, touching her and sitting where she can see me, then holding her until she settles into sleep.
I always have Alice’s emergency medication, Midazolam, on hand if she does not start breathing or come out of a seizure, but as our medical team is well aware this medication is unlikely to be effective when it is most needed.
Alice was previously on a pharmaceutically available anticonvulsant medication; Zonegran. This medication did not stop Alice’s seizures. The side effects listed on the CMI provided with this medication are extensive: Self harm and suicide, panic attacks, depression, dizziness, nausea, poor muscle co-ordination, stomach pains and many more.
Choosing Medical Cannabis was possibly the hardest decision I have ever made.
I am trialing with Alice, under medical supervision, a liquid form of Medical Cannabis as an anticonvulsant. Alice’s seizures are now controlled, with break through seizures only when she is unwell with a temperature. The side effects of Medical Cannabis are: Improved physical ability including walking, improved intellectual ability including talking, improved social interaction including expressing the love she feels for her family and for life; in fact, improvement in all areas of development, leading to an improved quality of life for both Alice, and in turn my family.
Choosing any treatment for your child is not an easy decision – choosing Medical Cannabis was possibly the hardest decision I have ever made. But I don’t regret it.
I very much doubt I would be as passionate about the legalisation, research and medical dispensing of Cannabis as a medication if I had not seen the benefits firsthand.
Medical Cannabis needs to be legalised for research purposes in Australia so that its benefits to children can be fully understood, and so it can be medically monitored and dispensed relevant to individual patient’s health requirements. For some patients there are no available pharmacological medications that can manage, or provide the relief from the symptoms they experience due to their terminal, chronic or disabling condition.
If parents, like myself, continue to be placed in a position where we have no choice but to self-medicate, using a Cannabis product which has not been clinically trialed and tested to ensure its quality and effectiveness, that is putting our children at risk. Currently, we can’t ensure they are provided with a medical grade product specific to their health requirements.
Research data from around the world is proving Medical Cannabis’ benefits in seizure control, cancer, diabetes, and so many serious health issues affecting the spectrum of our community. As Tony Abbott suggested, there is no use wasting time and money on research that has already been done so, let’s research what is important.
We know there are Cultivars (or Strains) of Cannabis with Cannabinoid Profiles that have more medicinal benefit than others; research into the most appropriate cultivars and cannabinoid strains specific to patients/conditions would be most beneficial.
Alice has the right to life saving medication.
Our government has a Duty of Care to ensure appropriate health care for all Australians.
The right to access lifesaving medication, the right to life, the right to health care based on individual patient needs, should not be a political decision based on individual bias… it should be a decision based on community need and opinion, and, considered, intelligent medical opinion based on research, evidence and medical discussion and debate.
Alice has the right to life. Alice has the right to life saving medication. Alice has a mother who will stand up for her rights, and for the rights of all Australian’s who don’t have a voice … because that’s my duty as a mother, my duty to protect my child.
Nicole appears on tonight’s episode of Insight at 8.30pm on SBS ONE which asks if medical marijuana is doing good or harm.
