The Infancy Stage

• Severe Muscle Weakness (arms and legs are “floppy”) — Muscle tone is affected throughout the entire body (muscles in the mouth, throat, lungs, heart, etc.). Strength and muscle tone generally improve with age and the help of growth hormone treatment.
• Weak Cry & Poor Suckle — Babies sleep a lot, do not cry very much, if at all, and often need to be woken up to eat. They typically are unable to feed from a bottle and often need a feeding tube to eat.
• Sleep Apnea — Some babies require oxygen because their brains don’t tell them to breathe regularly.
• “Failure to Thrive” — Babies may not gain weight or grow normally; may occur if feeding problems aren’t monitored closely.
• Delayed Motor/Physical Milestones — Skills like reaching for toys, rolling over, sitting up, crawling, walking, speech — these are eventually achieved, but later in infant/child’s life with the intervention of physical, occupational and speech therapies.

The Hunger Stage

• Uncontrollable Appetite — Typically begins between the ages of 1 - 6 years old. People with PWS are not able to control their food intake and will overeat if not closely monitored. Part of their brain (hypothalamus) does not tell them when they are “full” after eating, so they always feel hungry. Some people with PWS will do anything to find food to eat. For this reason, refrigerators and food cabinets may need to be locked in their homes.
• Slow Metabolic Rate — Runs approximately 60% of normal. People with PWS do not burn calories as easily as others. This makes it much harder for them to lose weight.
• Low Energy Level — It’s difficult to exercise or play sports as they will tire easily.

Other Symptoms/Characteristics:

• Small Hands & Feet
• Short Stature
• Down-turned Mouth
• Delayed Speech
• Behavior Challenges
• Scoliosis
• High Pain Threshold
• Temperature Dysregulation
• Skin Picking
• Bruise Easily
• Breathing Problems
• Lack of Vomiting
• Dental Problems
• Strabismus
• Hypopigmentation