Joy
This child is extremely ill; and could possibly die. And the mother does sound desperate.
I would recommend a thorough evaluation by a geneticist or endocrinologist or team specializing in metabolic disease. My first thought was cystic fibrosis, has the child been tested for that? And/or genetic testing? I know there was an excellent and compassionate genetic doctor at Ochsner Foundation Hospital in New Orleans, his name was Duane Superneau. Maybe he is still there, not sure after Hurricane Katrina, and would speak to you.
There are numerous metabolic disorders and the child has many of the symptoms. If the mother can manage, she can go and spend a few days at an inpatient facility where these specialists can see her. I found the one below on the internet, I'm sure there are others in major cities. Not sure where this mum is located, aren't you in Australia? Check in a major city near her. She should save the email you posted as it gives a pretty good history. Hopefully she can explain that weaning would leave the child starving. I hope she can get help soon.
Laurie Wheeler, RN, MN, IBCLC
Mississippi, southeastern USA
<<<Metabolic Disorders Clinic
The Metabolic Disorders Clinic provides comprehensive diagnostic and management services for children with known or suspected inborn errors of metabolism. Because these diseases are complex and affect many organ systems, children who may have one of these conditions should be cared for by medical experts in the field. Under the direction of William Wilcox, MD, the patient care team includes a nurse, pediatric dietitian and medical social worker. >>>
For more information or to make a referral, please contact:
Metabolic Disorders Clinic
Cedars-Sinai Medical Center
8700 Beverly Blvd., Suite 378
Steven Spielberg Building
Los Angeles, CA 90048
Phone: 1-800-CEDARS-1 (233-2771)
Fax: (310) 423-0237
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