Dravet Syndrome



Alaina is 9 years old. Her first seizure was at 4 months on the night of her immunizations. Despite the fact that it lasted for over 30 minutes, the doctors thought it was febrile and wouldn’t happen again. She continued to have more prolonged seizures, about one each month for the next several months despite being on seizure medications. At 19 months old, she had her worst seizure. It lasted over 45 minutes and still not stopped, so the ER staff put her in a coma and intubated her. Even after being knocked out, the seizure could still be seen occurring on the monitors.

At that point she was put on a different medication and her seizures decreased in severity, but never totally went away. She would frequently have a seizure if she was playing outside on a warm day or if she was sick. Otherwise, she seemed like a healthy child until around age 2.5 we started to notice some delays in her speech. Her neurologist still wasn’t concerned since her seizure control was getting better. The medicine that was helping her so much is known to cause problems with speech so we decided to remove it and try different drugs. Then she started having frequent seizures again. She was put in the hospital for testing and that is when we learned that she has a genetic disorder called Dravet Syndrome. The two medications that she had been on were actually causing her to have seizures because they have the exact opposite effect on the brain that would be desired for a person with Dravet Syndrome. They were taking an existing problem and simply making it worse.

After learning about Dravet Syndrome, we realized the characteristics fit Alaina almost perfectly. With this new knowledge, we put her back onto some of her previous medications which were working reasonably well. We are so happy that other children are now being diagnosed earlier and receiving the proper medicines. With this diagnosis we know that the chances of her ever living independently as an adult are so very slim, but our job is to provide the best life possible for her regardless of how it unfolds.

Alaina enjoys going to school and playing with her friends in a special needs classroom. She is very social, especially to adults, but other children sometimes don’t know what to think of her – but so far she doesn’t seem to care! She loves playing on the iPad and watching Super Why, Daniel Tiger’s Neighborhood, The Backyardigans, and Jake and the Neverland Pirates. She also loves to go swimming, hiking, and ‘reading’ her magazines.

Our hope is that someday soon we can have access to cannabis in Georgia so we can see if it helps Alaina in the way that so many children in legal states are seeing incredible improvements in seizure control and overall quality of life. She is currently on five FDA-approved medications that have terrible side effects and that we know have the potential to do serious damage to her liver and kidneys. Some of her medicines reduce her appetite so much that she is now incredibly underweight. Even the possibility that one medication in the form of medical cannabis could not only control her seizures, but allow her to live without all of the undesirable side effects of her existing medications gives us so much hope for her future.

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