Yes, stressful is the way to describe last week. I guess I am recovered enough to finally post about it.
Jaeya and Meisyn spent the week at Shriner's Resort, er, Hospital for Children. We are immensely blessed to be cared for by the kind and generous people of Shriner's. My children adore them as do I.
Jaebird had her first IV pamidronate infusion. We were kept overnight Thursday as it is not uncommon for children on their first dose to spike a fever. Jaebird did great and on Friday late afternoon we were released. By the time we finished Grandma Carol's penny auction and bbq Jae was wilting. She didn't look so good. By Saturday morning she started a fever. Good thing we were prepared. No problem!
It was time to go to Grandpa Keith's 80th birthday bash and she had to stay at Grandma's. She didn't feel up to the festivities. We decided to drive home at 8 PM as Jaebird just wanted her own bed after a week away at the hospital. We arrived home at 1 AM. At 3:30 she started projectile vomiting. Again at 5 AM. I was holding her in my lap at about 10:30 AM and she started bobbing her head. Stephen exclaimed, "Stef, she's seizing!" Sure enough Jaebird fell into a full blown grand mal seizure. We had Ammie's diastat handy and administered a dose. On the way to the ER she started vomiting old blood.
Jaeya ended up being admitted to the hospital after having a CT scan and many more blood tests.
It is unknown what exactly caused her seizure but it was likely a reaction to the pamidronate. When I told Jaeya today that we go back to Shriner's in 5 more days she whined and hid her arm behind her back. NO MORE IV's! Nope, I assured her. This time she and Meisyn are going to be fitted for their new POWER CHAIRS. Daytona better watch out.
Russell Butterfield, MD, PhD
Instructor, Departments of Neurology and Pediatrics
- BS (Microbiology), Brigham Young University
- MD (Medicine), University of Illinois
- PhD (Genetics), University of Illinois
- Residency-Pediatrics; University of Utah, School of Medicine
- Residency-Child Neurology; University of Utah, School of Medicine
Pediatric neurology, neuromuscular disorders, neurogenetics, metabolic and mitochondrial disorders
Genetic aspects of disorders of muscle including myopathies and muscular dystrophies, with particular interest in collagen VI myopathies (Ullrich congenital muscular dystrophy and Bethlem myopathy)
Dr. Russell Butterfield is an Instructor in the Departments of Pediatrics and Neurology at the University Of Utah School Of Medicine. After receiving his B.S. in Microbiology from Brigham Young University, he joined the Medical Scholars Program at the University of Illinois at Urbana-Champaign. He completed his PhD training in mammalian genetics, studying genetic aspects of organ-specific autoimmunity. After completion of medical school he moved west to the University of Utah, School of Medicine where he completed training in Pediatrics and Child Neurology.
Dr. Butterfield is a Muscular Dystrophy Association Fellow under the Clinical Research Training Grant, supporting his study of neuromuscular disorders. His current efforts are in characterization of genotype/phenotype relationships and molecular pathogenesis in collagen VI myopathies. He has an interest in all types of neurogenetic and neuromuscular disorders with an emphasis on muscular dystrophies of childhood onset.