According to the girl’s mother, Anj, her then-5-year-old daughter, Madie, was just several weeks into school. The unfortunate mom then received a call from her teachers, who reportedly noticed that the little girl was making weird movements.
During an interview with LoveWhatMatters, the mother said her head tilted back and her arms were moving back and forth. Anj then called the doctor right away and they said she might have had a seizure and to bring her in right away.
The brave mom quickly scheduled an appointment with a neurologist where they did a test right there to see if they could get her to have a seizure.
As scary as this was to hear, we at least knew what was wrong and how to help her. She was given seizure medication to combat the seizures and we thought she was on the mend.
Bur, unfortunately, the little girl continued to have what they thought were seizures. But they were lasting longer than the few seconds we were told they would last.
Her neurologist at the time continued to up her meds or give us a new one to try, but the seizures never stopped. Unfortunately, they seemed to be getting worse.
In a short period of time, Madie was given about 4 seizure medications to try. The side effects in some of the medications were horrible. She was allergic to one of them and another brought on awful side effects.
She had follow up EEG’s that now showed normal brain activity, however she was now have up to 15 episodes a day. When Anj and Madie visited Dr. Coffman, he did several tests and then looked at the video Anj brought.
It took him just a few moments of watching the video to tell us he knew what was wrong with Madie. Paroxysmal nonkinesigenic dyskinesia, or PNKD. At her next appointment, the doctor told them that if the genetic testing came back positive, Madie’s immediate family would have to be tested.
At that appointment it was explained that some kids stop having issues around puberty, but with others, it can get worse. Madie’s life was constantly being disrupted. At the end of her 7th grade year, the family celebrated a milestone they weren’t sure they would ever see. Madie made it through her entire 7th grade year without a spell! The family’s visits to the children’s hospital will now be every few years instead of every year just to monitor everything as she gets older.
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