Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Ann I am glad that you had your wits about you! I wonder why they would sedate for an EEG anyway? That would alter there results I have been told. We have talked about doing one on my autistic son because there have been some questionable sleep jerking but we could never get him to cooperate, so we have never been able to do one. I would question that first of all. Also I would put on everything that they need to take Malignant Hypothermia precautions on all procedures requiring anesthesia. When they ask for allergies...tell them this and also Versed. Our local kids hospital takes MH precautions with any kid with a neuromuscular disease but Mito is so unknown they might not realize. I would also take the anesthesia article on the UMDF site that Dr Cohen wrote and have it put in any charts you need to. And if they question you, I would ask them to have legal contact you and draw a document saying the administer of those meds will take full responsibility if anything happens. That's stops them cold, trust me! When was having his gtube surgery, we were in the bunny room (holding room for parents and pts before surgery) ready for it to start and FINALLY got to see the Anesthesiologist. I had asked to see him several times...and had told everyone to make sure he was using MH safe meds. Well of course, he hadn't...the machine was already loaded...so we waited while they blew out the machines and reloaded them. He was perturbed but willing. Its just too much a risk... I know a few mito docs do not take MH precautions when they schedule procedures but to me, its just better to be safe than sorry. Way to Go! Your doing a great job! Hope you feel better soon! deb deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy and True, born 01.18.05, with Sickle Cell Disease and GERD.www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2005 Report Share Posted March 26, 2005 I guess I'm a little confused here because Leah sees a pediatric neurologist and she has been sedated with a very mild sedation for her EEG's. Our neurologist even reads his own EEG's right afterwards to explain what he is seeing. He wanted to see if she is doing anything in the brain while sleeping compared to being awake. So I believe if I understand here it depends on the sedation. Leah's neuro of course is very familiar with mito and is cautious when he gives her this pink stuff to drink. I even double checked with my husband if she was sedated and why. Leah isn't out long as her doctor can clap her hands and slowly wakes up. So that is why I'm confused here about what I am reading. Nerenhausen mom to Leah VisibleWorship@... wrote: Ann I am glad that you had your wits about you! I wonder why they would sedate for an EEG anyway? That would alter there results I have been told. We have talked about doing one on my autistic son because there have been some questionable sleep jerking but we could never get him to cooperate, so we have never been able to do one. I would question that first of all. Also I would put on everything that they need to take Malignant Hypothermia precautions on all procedures requiring anesthesia. When they ask for allergies...tell them this and also Versed. Our local kids hospital takes MH precautions with any kid with a neuromuscular disease but Mito is so unknown they might not realize. I would also take the anesthesia article on the UMDF site that Dr Cohen wrote and have it put in any charts you need to. And if they question you, I would ask them to have legal contact you and draw a document saying the administer of those meds will take full responsibility if anything happens. That's stops them cold, trust me! When was having his gtube surgery, we were in the bunny room (holding room for parents and pts before surgery) ready for it to start and FINALLY got to see the Anesthesiologist. I had asked to see him several times...and had told everyone to make sure he was using MH safe meds. Well of course, he hadn't...the machine was already loaded...so we waited while they blew out the machines and reloaded them. He was perturbed but willing. Its just too much a risk... I know a few mito docs do not take MH precautions when they schedule procedures but to me, its just better to be safe than sorry. Way to Go! Your doing a great job! Hope you feel better soon! deb deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy and True, born 01.18.05, with Sickle Cell Disease and GERD. www.LifeofLoveProject.org www.debwells.com Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2005 Report Share Posted March 26, 2005 Me too, . Dr. Cohen arranges for Zoe’s sedation for tests at the Cleveland Clinic- and we have never had a problem or concern. I am guessing it was the chemical contents. ??? Suzanne , Mom to Zoe age 3. From: Sorensen Sent: Saturday, March 26, 2005 11:28 AM To: Mito Subject: Re: 's EEG/anesthesia... I guess I'm a little confused here because Leah sees a pediatric neurologist and she has been sedated with a very mild sedation for her EEG's. Our neurologist even reads his own EEG's right afterwards to explain what he is seeing. He wanted to see if she is doing anything in the brain while sleeping compared to being awake. So I believe if I understand here it depends on the sedation. Leah's neuro of course is very familiar with mito and is cautious when he gives her this pink stuff to drink. I even double checked with my husband if she was sedated and why. Leah isn't out long as her doctor can clap her hands and slowly wakes up. So that is why I'm confused here about what I am reading. Nerenhausen mom to Leah VisibleWorship@... wrote: Ann I am glad that you had your wits about you! I wonder why they would sedate for an EEG anyway? That would alter there results I have been told. We have talked about doing one on my autistic son because there have been some questionable sleep jerking but we could never get him to cooperate, so we have never been able to do one. I would question that first of all. Also I would put on everything that they need to take Malignant Hypothermia precautions on all procedures requiring anesthesia. When they ask for allergies...tell them this and also Versed. Our local kids hospital takes MH precautions with any kid with a neuromuscular disease but Mito is so unknown they might not realize. I would also take the anesthesia article on the UMDF site that Dr Cohen wrote and have it put in any charts you need to. And if they question you, I would ask them to have legal contact you and draw a document saying the administer of those meds will take full responsibility if anything happens. That's stops them cold, trust me! When was having his gtube surgery, we were in the bunny room (holding room for parents and pts before surgery) ready for it to start and FINALLY got to see the Anesthesiologist. I had asked to see him several times...and had told everyone to make sure he was using MH safe meds. Well of course, he hadn't...the machine was already loaded...so we waited while they blew out the machines and reloaded them. He was perturbed but willing. Its just too much a risk... I know a few mito docs do not take MH precautions when they schedule procedures but to me, its just better to be safe than sorry. Way to Go! Your doing a great job! Hope you feel better soon! deb deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy and True, born 01.18.05, with Sickle Cell Disease and GERD. www.LifeofLoveProject.org TechPro's MailScanner has detected a possible fraud attempt from " www.heartliftersgallery.com " claiming to be www.debwells.com Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
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