My almost 2 year old son was diagnosed with Erythromelalgia in February 2018. We have been battling bacterial pneumonia since December 2016. He has Hypotonia, reflux disease, failure to thrive, gross motor skills delays and are still testing for the underlying condition. We have been an extended stay patient and doing lidocaine infusions. He has an extremely severe case that doctors are mystified and so far no treatment has helped. He can’t do the things normal 2 year olds should be doing and that is hard as a parent.
Looking for ideas and making connections with others who suffer from this disease.