Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 We are trying very hard to get this done at our Children's hospital. I serve on the Family Centered care Committee there and hopefully in a few months this will be the reality. I am sure that once we have it done there would be no problem sharing it with others. Anne ---------- > > Dear Anne, > Again, more great ideas. Thanks. Maybe we could make up a prototype and > give it to hospitals, regional centers, etc to give to patients who have been > newly diagnosed with chronic disorders. This way, other parents don't have > to reinvent our wheel! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Ruth, Don't feel inadequate. Most of these things came for me out of necessity, not because I was creative or anything. Caitlin's early years were quite complicated with many hospitalizations and many emergencies, including trips to the hospital. It didn't take me long to realize that life was so much simplier having all this done. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Ruth, Don't feel inadequate. Most of these things came for me out of necessity, not because I was creative or anything. Caitlin's early years were quite complicated with many hospitalizations and many emergencies, including trips to the hospital. It didn't take me long to realize that life was so much simplier having all this done. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 - These are the medications that I have listed. The list grows as they discover new meds that are not mito friendly. There also may be others, but this is what I have listed: Depakote (anticonvulsant) Phenobarbital (anticonvulsant) Chloramphenicol (antibiotic) Tetracycline family (antibiotics) Erythomycin, Biaxin family (antibiotics) Propofol (anesthetic) Amino glycosides (not sure what class these fall into) Depolerizing muscle relaxants such as succinylcholine (anesthetic) Holothane (anesthetic) Enthrane (anesthetic) Trovan (not sure on this one either) The booklet " Mitochondrial and Metabolic Disorders, A Parent's Guide " is a collection of the three articles that appeared in Exceptional Parent. The other booklet is " Mitochondrial and Metabolic Disorders, A Primary Care Physician's Guide " . Hacker is the editor of Exceptional Parent. I just wrote to her and asked her for a copy of each. The address for Exceptional Parent is 555 Kinderkamack Road, Oradell, NJ 07649. I hope this info is of use. Never hesitate to ask questions. We were all new to all the mito stuff at one time. We also still have questions too. Laurie Gee, I'll bet you all get *so* tired of repeating yourselves! But, I'm > taking the risk here and asking: what are the Exceptional Parent booklets?? > I have recently subscribed but have no idea about the booklets. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 - These are the medications that I have listed. The list grows as they discover new meds that are not mito friendly. There also may be others, but this is what I have listed: Depakote (anticonvulsant) Phenobarbital (anticonvulsant) Chloramphenicol (antibiotic) Tetracycline family (antibiotics) Erythomycin, Biaxin family (antibiotics) Propofol (anesthetic) Amino glycosides (not sure what class these fall into) Depolerizing muscle relaxants such as succinylcholine (anesthetic) Holothane (anesthetic) Enthrane (anesthetic) Trovan (not sure on this one either) The booklet " Mitochondrial and Metabolic Disorders, A Parent's Guide " is a collection of the three articles that appeared in Exceptional Parent. The other booklet is " Mitochondrial and Metabolic Disorders, A Primary Care Physician's Guide " . Hacker is the editor of Exceptional Parent. I just wrote to her and asked her for a copy of each. The address for Exceptional Parent is 555 Kinderkamack Road, Oradell, NJ 07649. I hope this info is of use. Never hesitate to ask questions. We were all new to all the mito stuff at one time. We also still have questions too. Laurie Gee, I'll bet you all get *so* tired of repeating yourselves! But, I'm > taking the risk here and asking: what are the Exceptional Parent booklets?? > I have recently subscribed but have no idea about the booklets. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Laurie, The trovan is liver toxic, even to healthy folks without mito it can cause a problem. I also wondered if there was something else about it that was bad for mito, as I had a very bad experience with it, but I don't have clarification on that. amino glycocides are antibiotics I believe. and one question for you: what have you heard about erythromycin? I hadn't heard that. I have heard to avoid gentamycin because of the potential for neuromuscular blockade in susceptible individuals. I also heard that the part of augmentin that makes it last longer - the clauvenic (sp?) acid, causes some mito problems in some people. Thanks for posting the list, Jeannine Laurie wrote: > These are the medications that I have listed. The list grows as they discover new meds that are not mito > friendly. There also may be others, but this is what I have listed: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Laurie, The trovan is liver toxic, even to healthy folks without mito it can cause a problem. I also wondered if there was something else about it that was bad for mito, as I had a very bad experience with it, but I don't have clarification on that. amino glycocides are antibiotics I believe. and one question for you: what have you heard about erythromycin? I hadn't heard that. I have heard to avoid gentamycin because of the potential for neuromuscular blockade in susceptible individuals. I also heard that the part of augmentin that makes it last longer - the clauvenic (sp?) acid, causes some mito problems in some people. Thanks for posting the list, Jeannine Laurie wrote: > These are the medications that I have listed. The list grows as they discover new meds that are not mito > friendly. There also may be others, but this is what I have listed: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Anne- Dr. Cohen added these to my list when I saw him. Of course, he was talking about me and not others and I have already had a bad reaction to the depolerizing anesthetics. Thanks for reminding us that sometimes there aren't any choices and that some people will be able to tolerate them just fine. Laurie > Just food for thought but in serious infections you often can not get away > without using the aminoglycosides. Typically when they figure out what > bacteria a person is dealing with there is a list of a few antibiotics > that it is sensitive to. Usually the doc will start with the least risky > and work up. > > I know you all know this but I just wanted to remind that sometimes the > choices are hard. We should have the knowledge of these drugs and their > affect on mitochondria but also have to look at the situation and pick the > " lesser of 2 evils " and the best course for our child/self/loved one. > > Same with propofol - our anesthesiologist bans it for my kids based on > their individual issues, (lactic acidosis, receive intralipids) but he > cautions us not to go around saying it is not good for people with Mito as > the risk is virtually nil especially in less than 90 minute procedures. > > Anne - mom to Brittany, 12, Zachary, 7, Abigail, 6, and , 26 months > mitochondrial encephalomyopathy - complex 1 and 4 RCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Anne- Dr. Cohen added these to my list when I saw him. Of course, he was talking about me and not others and I have already had a bad reaction to the depolerizing anesthetics. Thanks for reminding us that sometimes there aren't any choices and that some people will be able to tolerate them just fine. Laurie > Just food for thought but in serious infections you often can not get away > without using the aminoglycosides. Typically when they figure out what > bacteria a person is dealing with there is a list of a few antibiotics > that it is sensitive to. Usually the doc will start with the least risky > and work up. > > I know you all know this but I just wanted to remind that sometimes the > choices are hard. We should have the knowledge of these drugs and their > affect on mitochondria but also have to look at the situation and pick the > " lesser of 2 evils " and the best course for our child/self/loved one. > > Same with propofol - our anesthesiologist bans it for my kids based on > their individual issues, (lactic acidosis, receive intralipids) but he > cautions us not to go around saying it is not good for people with Mito as > the risk is virtually nil especially in less than 90 minute procedures. > > Anne - mom to Brittany, 12, Zachary, 7, Abigail, 6, and , 26 months > mitochondrial encephalomyopathy - complex 1 and 4 RCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Anne- Dr. Cohen added these to my list when I saw him. Of course, he was talking about me and not others and I have already had a bad reaction to the depolerizing anesthetics. Thanks for reminding us that sometimes there aren't any choices and that some people will be able to tolerate them just fine. Laurie > Just food for thought but in serious infections you often can not get away > without using the aminoglycosides. Typically when they figure out what > bacteria a person is dealing with there is a list of a few antibiotics > that it is sensitive to. Usually the doc will start with the least risky > and work up. > > I know you all know this but I just wanted to remind that sometimes the > choices are hard. We should have the knowledge of these drugs and their > affect on mitochondria but also have to look at the situation and pick the > " lesser of 2 evils " and the best course for our child/self/loved one. > > Same with propofol - our anesthesiologist bans it for my kids based on > their individual issues, (lactic acidosis, receive intralipids) but he > cautions us not to go around saying it is not good for people with Mito as > the risk is virtually nil especially in less than 90 minute procedures. > > Anne - mom to Brittany, 12, Zachary, 7, Abigail, 6, and , 26 months > mitochondrial encephalomyopathy - complex 1 and 4 RCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 Lori, Do you homeschool? , Mom to Adelaine -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1999 Report Share Posted August 8, 1999 Lori, It sounds like you are doing an excellent job supplementing Alycia's schooling! It must be fun to have a child who can do projects with you! , Mom to Adelaine -- The 's Ann Arbor, MI j-cooper@... http://www.mich.com/~jaj Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.