Dravet Syndrome Stories From Those Who Know

This is a story about a little boy - my grandson.

He came into this world on August 3, 2012. Born a happy, healthy little boy, no one could even imagine what he was facing in his time to come. At around three months - he was noticed to have a twitching of his arm - after a bath. The very next day, again after a bath, he went in to a grand mal seizure that went on for hours. Rushing him to one hospital, it is beyond traumatic, made worse when the family is split up as we were all wrongly accused of being child abusers. After five medications that day, with one jabbed into his knee cap - he finally came out of the seizure. That began a long line of continuous poking, probing, test after test, hospitalization after hospitalization. He had one diagnosis after another - some right, some wrong. Professionals that think they know it all and will not listen to the parents. What this poor boy went through was unimaginable. First aide calls, too many to mention. What can all this be? One doctor diagnosed this condition as Dravet Syndrome, a very rare epilepsy condition that causes continuous seizures and developmental delays . The absolute diagnosis would come from genetic testing. There were six or seven genes being looked at and it was promising as all but one came back normal. Then the call came. He was missing part of the SCN1A gene which causes Dravet Syndrome. Is this your worst nightmare come true or was it finally a relief to know what this little guy was dealing with and the best way to treat this. Medication after medication - many with levels that have to be monitored and maintained. Some made you groggy, some work with each other and enhance the othet. Valium on hand at all times and he can never be alone. Going places is a challange - you never know. Changes in temperature, excitement, loud noises, bright lights and water temperatures are just a few of the triggers. Caregivers can't sleep, many long nights, any fever can set off a seizure. Ear infections, strep, menningitis, large adenoids and swallowing difficulties from the seizures. This went on and we are never out of the woods.

There is so much to tell - jumping ahead, he will be five soon and due to a wonderful M.D. who had the ability to run the study for Dravet and the CBD oil - Landen is experiencing a better quality of life. He attends a special school. Make a wish presented to him and his family a camper to him so it could be modified for his use. He continues to have nurses every night. As he starts his second year of school Landen continues to do relatively well. There is no doubt that there are still many challanges for him , but the CBD oil is working. Every day we have him is is a blessing.