A.M. is 13-year-old female who was diagnosed with congenital HIV soon after birth when she presented with generalized lymphadenopathy, bilateral parotid enlargement, and lymphoid interstitial pneumonitis soon after birth. She has had many courses of antiretroviral therapy including AZT, d4T (stavudine), 3TC (lantivudine, Epivir), nevirapine, nelfinavir, ritonavir, saquinavir, adefovir (Preveon), and monthly intravenous immunoglobulin infusions. She has a history of disseminated Mycobacterium avium infection treated with ethambutol, clarithromycin, rifabutin and others, Cryptosporidium, recurrent Herpes zoster treated with acyclovir, C. difficile colitis, chronic fungal otitis and sinusitis, and is CMV positive. As complications of some of her medications, she has severe sensorineural hearing loss, partial blindness due to iritis and uveitis, interstitial nephritis, and cardiomyopathy. Last year, she developed recurrent episodes of abdominal pain with elevation of transaminases, amylase, and lipase, and CT evidence of gallbadder thickening and sludge which was thought to be acalculous cholecystitis and recurrent pancreatitis. She was placed on total parenteral nutrition, but has not been able to tolerate adequate enteral feedings to maintain her weight. Recently, a decision was made not to continue any antiretroviral medications because of their severe side effects. She was recently told her diagnosis, and is in seventh-grade but has not been able to attend much school last year. Since her mother works full-time, she spends much of her time at home watching TV, so she often prefers staying in the hospital.
Question 1. Her weight is 35.2kg and her height is 130 cm. Is she malnourished?
Question 2. Would you have started her on total parenteral nutrition for her pancreatitis? Would you keep her on total parenteral nutrition indefinitely for what probably is a terminal disease? Does it matter whether she is on antiretroviral therapy or whether she has an estimated 2 months or 2 years survival?
Question 3. What are some alternatives to total parenteral nutrition? What if she or her mother refused a nasogastric tube or gastrostomy tube placement?