Hunters Mom responding

April 5, 2007 at 1:43 am

[FONT=”Comic Sans MS”]The doctors started him on 100mg of neurotin and now after 30 days they raised him to 200mg/day. His headaches are coming just about everyday. His legs hurt also just about every day.
Some days worse than others. We have been to All Childrens in Tampa with 2 crazy diagnosis, to Ft. Myers with another diagnosis, went to Schriners and waited 3 months for appt to be told I needed to leave well enough alone and quit putting my son through so much trauma, and went to Miami to wait 1 1/2 hours for a neuro surg. to tell me to tell him real quick about Hunter. So we called Mayo Clinic in Jacksonville, but they do not have a children unit so we ended up in Rochester MN, and that is where he had a nerve biopsy and was diagnosed with CIDP/CIDM. Health care really stinks here in florida if you dont have the common cold. My sons pediatrician shook my hand and told me GOOD-LUCK! Nice huh! Well he had another MRI today, so I’ll let ya know the outcome. Thanks for writing, its nice to have a place to come to.