One mom ’s insights: Navigating care for children with behavior differences

Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. She sees plastic surgeon Dr. John Mulliken for her craniofacial condition, known as Crouzon syndrome. But he’s just one of her many doctors. Diba is followed by Dr. Linda Dagi (Ophthalmology), Dr. Bonnie Padwa (Oral and Maxillofacial Surgery), Dr. Mark Proctor (Neurosurgery), Dr. David Coulter (Neurology), Dr. Laurie Ohlms (Otolaryngology) Dr. John Emans (Orthopedic Surgery), Dr. Carolyn Bridgemohan (Developmental Medicine), Dr. Dascha Weir (Gastroenterology and Nutrition) and Dr. Roger Breitbart (Cardiology). “We touch on all the departments,” says Monir, Diba’s mother. Diba has had a shunt placed in her brain to relieve pressure inside her skull. She’s also had eye muscle surgery for strabismus, dental surgery to remove her premolars and a tonsillectomy/adenoidectomy. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in). Though she’s never gotten really sick, Diba is a complex patient. She also meets criteria for autism spectrum disorder, so procedures most kids will put up with make her very anxious. Blood pressure measurement? “She hated that.” Sleep study? She didn’t sleep a wink all night, unable to tolerate the leads attached to her face. Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.) Even measuring Diba’s he...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Parenting autism Autism Spectrum Center child life Crouzon syndrome Dr. Bonnie Padwa Dr. Carolyn Bridgemohan Dr. Dascha Weir Dr. David Coulter Dr. John Emans Dr. Laurie Ohlms Dr. Linda Dagi Dr. Mark Proctor Dr. Roger Breitbart Source Type: news