Ask Nurse Lynn: Liver Function and Mental Health

Question:

Female, 29 years old, deletion subtype

Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year, lasts 4 -7 weeks usually.)

Nurse Lynn’s Response:

It is difficult to answer this question without the full details; however, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However, there are a few medical pieces that can overlap and are worth exploring with your doctor.

In general, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease, like advanced liver failure. In PWS, some adults can develop fatty liver disease, especially over many years. Most of the time this does not cause brain symptoms, but if liver function is reduced and someone eats a very high-protein diet, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster, especially if constipation is present.

What is well described in PWS is recurrent mental health episodes, including mood changes, psychosis, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress, anxiety, changes in routine, illness, sleep problems, or food-related distress, rather than liver disease. Constipation, gastroparesis, dehydration, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal.

Keeping track of patterns, time of year, stressors, illness, and food access changes can also be very helpful, even if the pattern isn’t obvious at first.

Resources:

Mental Health – IPWSO

The-Mental-Health-of-People-with-PWS-T-Holland.pdf

Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC

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