Reply To: 4 year old with CIDP – New to Forum seeking support

June 27, 2012 at 8:12 pm

I totally understand where you are coming from. My daughter was 4 when she was dx’d with GBS & later CIDP. Her neuro has never really treated anyone with CIDP before – let alone seen someone with her variant. It took a lot of researching on my part to finally convince him that I knew what I was talking about. Once he finally saw that I had indeed done my research, then he was more willing to listen to me.

I ended up devising my daughter’s treatment plan. I was allowed to do that because I was the one who was with her all the time & I could see deterioration before the dr could. When he finally acknowledged that & we got her on the correct treatment schedule for her, she started improving & hasn’t stopped.

Finding a good dr is key but also finding a dr that is willing to listen to YOU is also important.

Good luck with the new dr. Did you ask to be put on the cancellation list? Then maybe you can get in to see him/her sooner.