2 year old suffers from EM

Hi there,

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.

Thanks all!

1 Like

so sorry to hear about your son. it must be heartbreaking to helpless watch your child be in pain and discomfort.

i had genital burning on my vulva arose that age until i was about 5. of course my doctor didn’t know what it was and suggested slathering vaseline thinking the area was chapped?

it spread to my cheeks from 5-11 but only flared up in the winter. it spread to my feet but i didn’t think it was connected. and as an adult to it can happen now anywhere on my body.

i am happy that you have a diagnosis and can narrow your search help

xoxox. welcome.