Through discussion within our small community of families we've uncovered a few similarities in our stories and symptoms which are not in the formal PSS clinical record. As the condition is extremely rare, clinical studies are few and far between and we've found it helpful to know that certain features could be a result of the syndrome. The following issues have had some commonality amongst the few cases of PSS in our group, though everyone seems to have a very different range of symptoms, some children have none of these and some have a mix. The symptoms carry differing effects in each child, ranging from not at all extreme to fairly life impacting. This list is anecdotal and should not to be taken as medical advice however they could be used as starting points to discuss with your doctor. 


High pain tolerance

Rosacea / red cheeks

Many children have decreased sensitivity to pain.

Rosey red and hot cheeks reported by multiple families.

IgM, IgG and IgA deficiency

Many children have increased infections, colds and coughs, this could be related to an IgA deficiency.

Bi-lateral pstosis

Small ear canals

Some children have drooping eyelids

Some children have had tubes inserted

Sleep issues

Many families have reported light or disruptive sleep as well as trouble falling asleep.

Reflux and GERD

Can be linked to hypotonia which is common in PSS.

Growth hormone deficiency IGF-1

Reported in a few children.

Obsessive tendencies

Some of our families have reported some obsessive behaviour, typically in a non-harmful manner. However this could be considered normal childhood development.

Extreme interest in food

Many families have reported that their children show extreme interest in food. It is unclear if this is related to the hypothalamus or if it is incidental.