Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Thank you to all who replied to my first post. I just had a couple of questions since you ALL know more than me! 1. Does this mean anything in regards to mito? Low amino acid levels of: Luecine: 31.23 (normal 47-155) Isoluecine: 12.7 (normal 31-86) Lysine: 49.2 (normal 52-196) 2. Low Pyruvic Acid levels? 3. Isaiah was finally scheduled for an MRI....March 4th! Can you believe so far away? Well here is the reason why. The neurologist called today (well his scheduler) and said that he felt it was NOT SAFE to use typical sedation on Isaiah and that we would need to use anesthesia. I am confused on why he might feel that it is NOT SAFE. Is this common? Thanks for all your help...it is crazy being a newbie to all of this. Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Thank you to all who replied to my first post. I just had a couple of questions since you ALL know more than me! 1. Does this mean anything in regards to mito? Low amino acid levels of: Luecine: 31.23 (normal 47-155) Isoluecine: 12.7 (normal 31-86) Lysine: 49.2 (normal 52-196) 2. Low Pyruvic Acid levels? 3. Isaiah was finally scheduled for an MRI....March 4th! Can you believe so far away? Well here is the reason why. The neurologist called today (well his scheduler) and said that he felt it was NOT SAFE to use typical sedation on Isaiah and that we would need to use anesthesia. I am confused on why he might feel that it is NOT SAFE. Is this common? Thanks for all your help...it is crazy being a newbie to all of this. Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Willow, Your neuro is correct in not wanting to use " sedation " for Isaiah. With sedation, the body has to metabolize the sedation liquid. He might be able to handle it and be okay but, with a metabolic disease, it's better to err on the side of caution. Others have used sedation before and had a very hard time coming out of it. My girls just recently had an MRI and were put under general anesthesia. It's a lot of work as they had to be admitted the night before for IV fluids and their sugars had to be checked every 4 hours since they had to fast from midnight on. But, I would rather go through that trouble than to have something happen with sedation. It's also a good idea to make sure their airway is protected in case anything would happen. You just never know what's going to happen with these kiddos! Sorry you have to wait so long for the MRI. Sorry I can't help you on the levels but, I am sure someone else can. Good Luck! Kim - Mom to and Lindsey (3) Partial Complex I More questions... > > Thank you to all who replied to my first post. I just had a couple > of questions since you ALL know more than me! > > 1. Does this mean anything in regards to mito? > Low amino acid levels of: > Luecine: 31.23 (normal 47-155) > Isoluecine: 12.7 (normal 31-86) > Lysine: 49.2 (normal 52-196) > > 2. Low Pyruvic Acid levels? > > 3. Isaiah was finally scheduled for an MRI....March 4th! Can you > believe so far away? Well here is the reason why. The neurologist > called today (well his scheduler) and said that he felt it was NOT > SAFE to use typical sedation on Isaiah and that we would need to use > anesthesia. I am confused on why he might feel that it is NOT SAFE. > Is this common? > > Thanks for all your help...it is crazy being a newbie to all of this. > Willow > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Willow, Your neuro is correct in not wanting to use " sedation " for Isaiah. With sedation, the body has to metabolize the sedation liquid. He might be able to handle it and be okay but, with a metabolic disease, it's better to err on the side of caution. Others have used sedation before and had a very hard time coming out of it. My girls just recently had an MRI and were put under general anesthesia. It's a lot of work as they had to be admitted the night before for IV fluids and their sugars had to be checked every 4 hours since they had to fast from midnight on. But, I would rather go through that trouble than to have something happen with sedation. It's also a good idea to make sure their airway is protected in case anything would happen. You just never know what's going to happen with these kiddos! Sorry you have to wait so long for the MRI. Sorry I can't help you on the levels but, I am sure someone else can. Good Luck! Kim - Mom to and Lindsey (3) Partial Complex I More questions... > > Thank you to all who replied to my first post. I just had a couple > of questions since you ALL know more than me! > > 1. Does this mean anything in regards to mito? > Low amino acid levels of: > Luecine: 31.23 (normal 47-155) > Isoluecine: 12.7 (normal 31-86) > Lysine: 49.2 (normal 52-196) > > 2. Low Pyruvic Acid levels? > > 3. Isaiah was finally scheduled for an MRI....March 4th! Can you > believe so far away? Well here is the reason why. The neurologist > called today (well his scheduler) and said that he felt it was NOT > SAFE to use typical sedation on Isaiah and that we would need to use > anesthesia. I am confused on why he might feel that it is NOT SAFE. > Is this common? > > Thanks for all your help...it is crazy being a newbie to all of this. > Willow > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I don't know much about the labs......sorry. It is true about the sedation, though. Anethesia can be dangerous to a mito patient, so it is very good your doctor is being careful. There are two drugs with anethesia wich are not supposed to be used with mito, Versed and Propophol. (This is Cleveland Clinic Standard, some hospitals are a little different.) Also with our daughter it is insisted that she must have a anethesiologist due the sedation and have them with her at all times. Now that I probally scared you more, sorry. I will share that my daughter has had many, many sedations and has never had a problem. It's just good to be safe. Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 There is a paper written about mito and anesthesia. It talks about the risks and which should be avoided. If anyone wants a copy, I can forward it to them. Jill Jill Fisch SCADD Family Scarsdale, NY RE: More questions... I don't know much about the labs......sorry. It is true about the sedation, though. Anethesia can be dangerous to a mito patient, so it is very good your doctor is being careful. There are two drugs with anethesia wich are not supposed to be used with mito, Versed and Propophol. (This is Cleveland Clinic Standard, some hospitals are a little different.) Also with our daughter it is insisted that she must have a anethesiologist due the sedation and have them with her at all times. Now that I probally scared you more, sorry. I will share that my daughter has had many, many sedations and has never had a problem. It's just good to be safe. Rock, jazz, country, soul & more. Find the music you love on MSN Music! Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hi Kim Thanks for the info regarding why they do anesthesia vs sedation. I was completely annoyed that the person who called me was able to tell me that the neuro felt it was UNSAFE for my son, but then couldn't tell me why Thanks again Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Willow, How old is your child? If possible, I'd see if they could do the MRI without sedation or anesthesia. Does he really need an MRI? Anesthesia has a whole bunch of risks for mito patients. There is info about safe anesthesia on the umdf web sits. Propofol should be avoided and malignant hyperthermia precautions should probably be used. Amino acid levels are usuallly not important unless high, including pyruvic acid. Quote Link to comment Share on other sites More sharing options...
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