Similar experience with Nebutol

[Guest guest]

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 no

child 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.