propofol

[Guest guest]

WE do not ever use propofol if you have a choice and our anesthesiologists back us up on that. There are too many articles in some of the critical care journals showing the propofol inhibits mito function - specifically complex 4 and we have seen the boys do far worse after surgery when they have had propofol than they have done without it. Initially we did use it except for prolonged surgeries. Our anesthesiologists defined prolonged as anything more than 4 hours. So "prolonged" means different things to different people. Most anesthesiologists do not place arterial lines during shorter surgeries to monitor acid base balance - ours did with my kids and quickly found out that my boys got very acidotic with high lactate levels with the use of propofol after 2 hours. We then said we'd use it for anything under 2 hours. But after reading the literature even the head of the dept of anesthesia agreed with us that it was not a perfect option. In my boys case (so this may not be true for every person) they had tremendous decompensation 36 hours after surgery with multi organ failure. I have not seen them have such profound decompensation since we stopped using propofol. It is a hard choice to make, especially if you are not using inhalational anesthetics either. This leaves very little and it makes the job of the anesthesiologist harder. They assign my boys to a cardiac anesthesiologist (very good with critically ill kids who need anesthesia) and he uses a combination of versed, dilaudid and valium. He told me that part of him thinks sometimes that maybe we should try the inhalational drugs with the boys because they probably will not get malignant hyperthermia but then he says he thinks about it and does not want to be the one making that decision because he could be wrong....he opts instead to stay in the room with the boys and not assign their case to a resident (as most cases are) and he feels it is just plain old safer not to use the propofol or the inhalational drugs. I think wherever you go, there will be different opinions on this because the fact is - no one really knows. We KNOW that propofol for 2-3 days is not good (it is used in some kids with intractable seizures in the ICU but mito kids do not deal with it at all!!). But that is all we know. I think the most important thing is to find an anesthesiologist you trust, dialogue with him/her about the issues, read what you both can read and come to a decision together. I really do not think it is a black and white answer like do not use this.....it so depends on the child, the surgery, the issues and the skill and comfort level of the anesthesiologist. Annewww.caringbridge.org/wi/zachsam

[Guest guest]

Just a little note to add to Anne about Propofol. Cleveland Clinic has policy that no person with Mito get Propofol or Versed for anethesia. I have been very impressed that with every one of Gracies procedures as soon as they hear Mito they automatically follow with "no Propofol or Versed". I have never had to remind any of the anethesiologists of this.

[Guest guest]

Anne,

Thanks for the great info and perspective on propofol!

>It is a hard choice to make, especially if you are not using inhalational

>anesthetics either. This leaves very little and it makes the job of the

>anesthesiologist harder.

This is exactly why Emilie's anesthesiologists went with the propofol.

They said they felt Cohen's article " backed them into a corner " and

didn't leave them much in the way of options. It doesn't mean we

necessarily ended up making the right decision or that it's right for

anyone else...I just wanted people to know that according to Cohen's

article it's not as black and white as " no propofol. "

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold