Kids with LPHS
Hi,
I live in NY and have an 11 year old in the process of getting diagnosed with LPHS. Her doctors are great but they do not know much about the disease and she is in constant pain and in and out of the hospital for pain management.
She misses a lot of school and it does interfere with her social life. It is very frustrating as a parent to see your child in chronic pain! Does any know of any doctors in NYC that are familiar with LPHS?
For parents whose kids are diagnosed with this, what have you been doing to support your child?