Re: Similar experience with Nebutol

[Guest guest]

same here- same problem with it.... thought mine would never wake up.

Cindy-GA

Similar experience with Nebutol

Hi, In response to anesthesia with mito kids, we had a bad experience with Nebutol used for sedation with MRI's. Every time Collin had it, his heart rate would drop, he would take 2 days to come around and a whole host of other symptoms. This was before we knew about the mito disorder, and the staff continued to use Nebutol, insisting that nochild had ever had a reaction to it before. When we got to Cleveland Clinic, we mentioned this and Dr. Cohen said it was typical of mitochondrial disorders. Collin now wears a medic alert bracelet at Dr. Cohen's request that states among his history: intolerance to Barbiturates, use anesthetic precaution. It is a relatively common experience in mito disorders. Joni, mom to three wonderful kids and wife to one great guy.