In 2018, Morgan was an 18-year-old with a whole lot of love to give. She was living with her family, going to school, engaging in social activities, and playing pranks on unsuspecting people. At the end of that year, Morgan’s mom Dawn noticed that she started to act “off.”
Dawn brought Morgan to her Primary Care Physician (PCP) who thought she had something called Tardive Dyskinesia; a movement disorder associated with certain medications. She was tapered off of the suspected medication, but her symptoms just worsened. Morgan’s symptoms began with an eerie laugh that had a “cackling quality,” and she began rocking back and forth in her seat during car rides. She also developed difficulty with movement, later determined to be catatonia, and would at times seem “oblivious to the world around her.” Other symptoms she displayed were a lack of sensation of pain, and lastly, she completely stopped speaking. About six months after her symptoms began, she had what seemed like a seizure. Morgan was referred to neurology for an evaluation and underwent a number of tests, but no formal diagnosis was given. It wasn’t until her mom stumbled into an online forum about DSRD that a lightbulb went off. She immediately began researching DSRD, its treatment, and where they needed to go for evaluation.
In 2022, four years after development of symptoms, she underwent the same litany of tests that Sara endured. Her neurologist arranged for her to start IVIG infusions shortly thereafter, however her family and her medical providers were concerned about efficacy. Because Morgan’s symptoms had persisted for so long, it wasn’t clear if IVIG would be effective. Her first infusion was relatively easy, she tolerated the medication well. The second infusion was more difficult, she spiked a fever and felt completely exhausted and worn down.
For the first six months she had a treatment monthly, and for the last eighteen months, she has had treatments every three weeks. Slowly, Morgan has begun to regain function. She is now able to engage socially, and she has rekindled friendships that had lagged while she was in full-blown regression. The fear that the treatment wouldn’t be effective seems to have been unwarranted. Just as her speech was the last thing to be affected when she first deteriorated, it was also the last thing to return. The first words she spoke were to her mother Dawn. She said, “I love you.”