Children's Care Fund Testimonial
Arabella's Mother, Heather
Our journey started in December of last year when Arabella started having vision deficits. We read every night and she kept bringing the books closer and closer to her face in order to see them.
In addition, she became disinterested in family movie night, even when it was her turn to pick the movie. She was also getting more clumsy, tripping on things she normally would not trip on. I made her an eye exam at our optometrist, but I could not get her in until the beginning of March.
When we finally went to the eye doctor, he did not see any reason for her to have a decrease in vision. So we ended up going to see a pediatric ophthalmologist that same day, who immediately saw optic nerve atrophy- This is not good. I am an ER nurse and am almost done with my nurse practitioner degree, so I knew this was not good news. Dr. Sala ordered an outpatient MRI. Initially the MRI wasn't scheduled until April 8th! I called a friend and she was able to get the MRI moved up.
We got the MRI done at UPMC Hamot and were sitting at Dr. Sala's office in the middle of a visual field exam when the MRI results popped up on the myUPMC app- Arabella had Optic Neuritis (Inflammation of the optic nerves in the eyes). We were sent Pittsburgh Children's Hospital for admission for high dose IV steroids. This was not easy because I am a single mother and Arabella has an older brother and sister. We are rarely away from each other.
What was supposed to be a 3-5 day course of high dose steroids, turned into 18 days of one thing after another. While admitted, we found out that Arabella has an autoimmune disorder called MOG- Myelin Oligodendrocyte Glycoprotein Autoimmune Disease. This is a condition where the body attacks itself, specifically the eyes, brain, and spinal cord.
Arabella's vision has significantly improved, but she has permanent peripheral vision loss, and her color vision was affected. At this point, they do not know if/when she will have another episode and we have to follow up every couple months with neurology and ophthalmology in Pittsburgh to closely monitor her. She also has to see Genetics in Pittsburgh as well.
While at Children's, we found out that Arabella's thyroid levels are abnormal, and she also has kidney abnormalities. We go to the Children's Specialty Clinic in Erie to see Nephrology and Endocrine. This is so nice, otherwise we would be driving to Pittsburgh even more often!
It has been a roller coaster!