Dear Dr. Green:
My son has suffered from Dravet syndrome and his condition is not improving. I have watched videos of children benefiting from CBD-rich cannabis tincture. I live in a legal marijuana state and would consider trying ANYTHING to help my child. Is this safe for children (he is nine)? And are there significant side effects of CBD? — Pat G., Medford, Ore.
Dear Pat:
Your child is suffering from a rare type of genetic epileptic brain dysfunction which is characterized by frequent seizures that are often resistant to therapies. This commonly begins in an otherwise normal child and often the onset is associated with the first vaccine at age 6 months. Most children have some developmental delays by age 2 and difficulties in walking is common.
The syndrome varies widely and the response to medications also varies. There are some typical anti-seizure medication that can actually worsen seizures in your child.
My first recommendation is that your child has a full evaluation by a neurologist who specializes in epilepsy to make sure the diagnosis is correct and has put together a plan to try different medications to see if the seizures can be controlled with standard medication. A genetic counselor can also help define the genetic problem.
There are also other therapies and medications which are not completely studied which may improve the situation such as Intravenous Immunoglobulin, ketogenic diet and vagus nerve stimulation.
There are anecdotal reports of improvement of seizure activity with CBD. In 2013, there was a survey article from the Department of Neurology at Stanford University and published in Epilepsy Behavior of the use of CBD in children with intractable seizures. This showed a significant improvement in seizure activity, improved mood, alertness and sleep. Some side effects were drowsiness and fatigue.
“>In 2016 a phase 3 trial from England with the use of Epidiolex (a CBD-based medication) showed significant improvement in seizure activity with minimal side effects.
So putting this all together, I feel we should first attempt to control the seizures with standard medications. If this does not show the effects we would want, it would be worthwhile to look at other options that have not been completely studied. This would include a discussion on the use of CBD with a healthcare provider who understands the syndrome and the use of CBD.
Our goal would be to limit the seizures >and improve mood and cognition. You would be taking the risk of CBD/THC in a developing child’s brain which might have significant long term effects. This risk is balanced against a debilitating disease which also has the potential of causing some cognitive impairment.
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Having a multidisciplinary approach with a pediatrician, a neurologist, a genetic counselor and a health care provider who understands the use of CBD is essential. Researching through the Dravet Foundation and the Epilepsy Foundation can also provide significant help with their advice on day to day tips to ensure the safety of your child and their ongoing research into this rare disease.
This information is intended only to complement, and not to replace or contradict, any health or medical advice or information provided by healthcare professionals. If you have any questions, please contact your doctor or other healthcare professional.
