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A mom's journey finding out her baby girl has epilepsy until now.

How I met Dana, the mom of Miss B.

We lived in the Fargo-Moorhead area until our boys were the ages of 9 and 7.

Bryce and Broc are a grade apart and Bryce was the same grade as Dana's son Jaydon. Since they were all about the same age, we got to know their family a little bit in kids sports and school activities. We truly became to know each other better with the first ever annual Epilepsy Walk for the FM area. Dana's daughter, Miss B had uncontrolled epilepsy at the time. Dana and I were on the original committee and she helped me learn more, as I hadn't been diagnosed that much before. I was more controlled at that time, vs. uncontrolled with various kinds of seizures now. Even now since our moves to KY, then now FL she has been there for me to reach out to with questions or just listen. I treasure your strength as a mom and family living with epilepsy, and thank you for still being there for me.

The Coley's journey with their daughter Brandalyn Coley or AKA Miss B. Told from a mother's own heartfelt words.

Miss B was a healthy 9lb 13oz full term baby. When she was 6 months of age, she started having “episodes”. Never did we think it was seizures.

At her 6 month well check her pediatrician said, “how concerned are you?” I was as I wasn’t sure what she was doing. Testing began. An EEG showed infantile spasms. And the journey began….

We went to Mayo Clinic for more testing. Nothing showed for the “why”. She was then diagnosed with intractable epilepsy with unknown etiology. Her milestones basically stopped there.

The fear of the unknown began. She tried several seizure med cocktails; the ketogenic diet; nothing worked to stop them. Her seizures would change with the changes of meds. She had cluster seizures so very hard to control. She would have hundreds a day!

In 2015, Minnesota jumped on board to make medicinal cannabis/marijuana legal. Miss B doctors at MEG and they joined a study to use cannabis as a seizure med. Living 4 hours from MPLS/ St Paul made this journey an adventure. August 2015 was a miraculous turning point for Miss B. It was a blind study but I knew right away she was getting the real deal! CBD has been the medicine to control her seizures!

She has been seizure free for 3 years and her quality of life has improved significantly.

She is nonverbal and uses a wheelchair but she is a fighter and amazing me daily!

She is a spunky, strong 18 year old now and we cherish our gift every day!

Dana, Miss B, and her older brother Jaydon.

I hope this shows everyone's epilepsy journey is different, and can be diagnosed at any age. This also displays, it is not hereditary. There are not always true signs of being diagnosed with epilepsy. You need to fight for yourself or child to get the proper treatment.


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