Reply To: 12 year old son with atypical GBS/CIDP
It isn’t unusual to take some time to arrive at a diagnosis, particularly when the presentation is atypical. CIDP is an unusual disease, and even more so in children. Even if the diagnosos of CIDP is correct, there is so much individual variation that you cannot know this early how it will play out.
When you write “they,” who do you mean? Your son should have a single neurologist overseeing treatment for his neuropathy, not the hospitalist team. And preferably one with experience with CIDP. Pain is not the reason a person with a peripheral neuropathy can’t move, as you know. If “they” are unclear about this, “they” must not be neurologists.
I have CIDP, but I am an adult. There are others who have contributed here in the past, and who have children with CIDP, so hopefully one or more will see this.