HWN Suggests

Sweetness…bittersweetness…

Those series of moments that stand out from all the others because of the palatable difference in their energy, thick in the air. Joyous. Laughter. Clarity. Sweetness. So sweet my heart jumps. Tears in eyes. Awe. Siblings playfully teasing each other, laughter bubbling up. My son, understanding jokes and making his own.

No frustration because one can have a snack that the boy can’t have. Instead, Blake inquisitive about her ice cream, happy with his pathetic ‘cereal snack’ of 5 Rice Krispies. Magical moments when these siblings have a camaraderie common amongst others and rare between ours.

Wait, what’s that? Fear? Fear bubbling up in my gut. Why fear? Why now? Because moments…

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Featured

 CBD Reduces Frequency Of Seizures In Dravet Syndrome

Adding cannabidiol--a cannabinoid with no hallucinogenic properties--to standard drug therapy for young patients with a rare seizure disorder known as Dravet syndrome significantly reduced the frequency of seizures, based on the results of a new industry-funded study.

Articles of Interest

Charlotte’s Story: One Family’s Choice to Fight Dravet Syndrome with Cannabis

magine that you are home, getting your beautiful, perfectly healthy 3 month old child out of the bath when out of nowhere their eyes begin to flicker—they’re having a seizure. This nightmarish scenario became a reality for the parents of Charlotte Figi, a little girl who began having seizures at the tender age of 3 months old. At first, doctors didn’t want to call Charlotte’s condition epilepsy & told her parents that she would likely outgrow the seizures. Unfortunately, Charlotte’s seizures didn’t go away…they increased in frequency.

Can Cannabis Treat Dravet Syndrome?

Charlotte Figi helped bring needed attention to Dravet Syndome, but it remains a largely unknown syndrome. Yet, much of the support for cannabidiol’s efficacy in treating seizures, which has received considerable media attention, stems from patients with Dravet Syndome. This, in part, is because its cause is well-known, allowing researchers to study underlying mechanisms and potential therapies for seizures which are caused by a single genetic mutation.

Cannabinoids for pediatric epilepsy? Up in smoke or real science?

It is an exciting time with respect to the study of phytochemicals in their application to the treatment of epilepsy and in particular intractable pediatric epilepsies. It is particularly satisfying to see that the grassroots experiences of families who have children suffering from severe intractable epilepsy have been able to move the field forward so rapidly.

Explainer: what is Dravet syndrome and how can it be managed?

Fortunately, major developments in our understanding of the genetic cause of Dravet syndrome have paved the way for more suitable treatments and the prospect of precision drugs that directly target the root cause of the disorder.

Meet The Children Who Rely On Marijuana To Survive

My ultimate goal is that people might be open to the possibility that there’s a better way — that cannabis is a medicine,” she said. “Kids across the country and internationally should have access to this medicine.”

More Evidence That Weed Extract Effectively Treats Epilepsy in Children

The results added much-needed data to the well-known anecdotes of epilepsy patients treated with CBD, writes Samuel Berkovic, a professor of medicine at the University of Melbourne, in an editorial accompanying the study in the New England Journal of Medicine. "This trial represents the beginning of solid evidence for the use of cannabinoids in epilepsy. It requires replication," he writes.

Vivian and Meghan – living with Dravet Syndrome

Meghan and her husband Brian never thought they would be moving almost 2,000 miles across the United States for their daughter to be treated with medical marijuana. But when their baby daughter, Vivian started having seizures due to Dravet Syndrome, and standard pharmaceuticals weren’t working, that’s exactly what they had to.

What My Son's Rare Epilepsy Diagnosis Taught Me

In the past eight months I have gained a perspective for how truly devastating this disorder can be. Now, instead of counting seizure freedom by the weeks, some days we count it by the hour. Thankfully, despite all of this, he’s still our Shayne.

When Parents Start Companies to Cure Their Children

In 2012, he and Jim Jacoby, an Atlanta-based real-estate developer who has a daughter with Dravet, founded Intellimedix LLC. It would use the algorithms to determine if any existing drugs showed promise, then test them in zebrafish genetically altered to carry Dravet.

Resources

Dravet Syndrome Foundation: Molly’s Story

The Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.

Dravet Syndrome Foundation

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.

Dravet Syndrome UK

Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research.

Dravet-Syndrome.com

Dravet syndrome is a rare and deeply impacting condition for both the child and his family. That is why, throughout the world, families have gathered around association to provide advice and support.

dravetmomma

A journey supporting our son with a severe form of epilepsy…

Haley is my Hero

Haley has had uncontrolled seizures since she was 5 months old. It was not until she was 7 years old when she was diagnosed with Dravet syndrome, a catastrophic form of epilepsy. Haley's journey with Dravet has taken us on many unexpected twists and turns. I am blessed to be her mom and see the goodness of others through her.

Jackson Stormes: A Difficult and Amazing Journey

Living with Dravet Syndrome and all the complications.

Little Luella

All about our little Luella and her battle with seizures and Dravet Syndrome.

TakeOnEpilepsy.com

Caregivers who face treatment-resistant epilepsies such as Dravet syndrome, Lennox-Gastaut syndrome, and Tuberous Sclerosis Complex share a journey unlike any other. There are challenges every day that require you to become experts in these serious conditions. This site was developed by GREENWICH BIOSCIENCES with you in mind–and in charge!

Team Kye

Team Kye supports Kyelynn's journey with Dravet Syndrome a rare genetic childhood epilepsy.

Epilepsy Foundation

Dravet syndrome is a rare genetic epileptic encephalopathy (dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. Prior to 1989, this syndrome was known as epilepsy with polymorphic seizures, polymorphic epilepsy in infancy (PMEI), or severe myoclonic epilepsy in infancy (SMEI). The disease begins in infancy but is lifelong.