Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Sharon, You and Clayton are in my thoughts and prayers tonight. I just read your post and it is so difficult for folks to understand the fear that is associated with every " normal " medical procedure our kids have. I hope Clayton wakes stronger and calmer on his next rising. Know that the you are in the thoughts of so many of us who know that terror associated with anesthesia and these special angels. My heart is with you tonight. My little Jess seized yesterday with a reflux seizure and abnormally long post ictal and a grand mal this morning... but after a nice cleansing enema and a great bath... actually joined her classmates for two hours today. Alas, I have extra energy and I'm sending it to you... :-) sharon c. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Sharon, Phenobarbital can be toxic for mitochondria, so I have to wonder if that might be responsible for some of the symptoms that Clayton experienced. It is listed in the syllabus from the 97 UMDF Mito Conference as well as the article on sedation and anesthesia by Shoffner and Cohen, in the UMDF Newsletter. Phenobarbital is a barbiturate and barburates can be toxic for mitochondrial patients. Jeannine SDidinsky@... wrote: > I broke down and called the hosp who > informed me that it was not probably related to the sedation - yeah ok. Well > he is sleeping now after I rocked him to sleep - but he does not look great - > eyes all red puffy and very pale. We will keep an eye on him. Hope he > remains stable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 In a message dated 2/10/00 10:59:36 PM Eastern Standard Time, sawyer@... writes: << Phenobarbital is a barbiturate and barburates can be toxic for mitochondrial patients. >> It was not Phenotbarital per the neuro but was actucually Pentobarbital - which is different per Phenobarbital. He had it is December with no problems and this is what the neuro - who knows his diagnosis ordered. SHaron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 In a message dated 2/11/00 8:06:22 AM Eastern Standard Time, SDidinsky@... writes: << Phenobarbital is a barbiturate and barburates can be toxic for mitochondrial patients. >> i am confused and wondering why orion was put on phenobarb... i know they tried several different seizure meds before it, though... and they kept his level pretty high. even so, after maybe 2 weeks, he would start again with the seizures and they would need to increase it. it was a cycle... how are barbiturates toxic for mito? can anyone explain to me how they affect it? any info would be appreciated... julia orion's mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 thanks for the info jeannine... i wish i had a way of knowing if orion had any bad effects from the phenobarb. i do think that it was a last resort med for him, and i know that they put him in a phenobarb coma. i hate all of this not knowing... i am just now learning so much that i didn't have a chance to learn when orion was here... his condition deteriorated so rapidly, that we will never know if any of it was from his meds, or what was from the disease, etc... sorry to be depressing; i am having a tough time lately for some reason... julia orion's mommy 9-18-98 to 2-3-99 familial erythrophagocytic lymphohistiocytosis and mito In a message dated 2/12/00 12:54:15 PM Eastern Standard Time, sawyer@... writes: << there was clear deterioration that did resolve somewhat when we discontinued it. Unfortunately though, we used it for years and I'm not sure that we will ever recoup from the long term damage that was done, but at least her disease appears to be far more stable than ever before. Our mito doc feels that this is primarily because she is no longer on phenabarb. If your mitochondria aren't functioning at top capacity, then anything that further compromises that function can cause problems. Likewise, anything that you can do to boost the function of inefficient mitochondria also may help. For some people supplements play this role. Of course it is a very individual thing. My older daughter is not as severely affected as my younger one and for her the phenabarb didn't seem to have as negative effect. I do know that she did better once she was off it though. Hope this helps. Jeannine >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Jaz739@... wrote: > > i am confused and wondering why orion was put on phenobarb... i know they > tried several different seizure meds before it, though... and they kept his > level pretty high. even so, after maybe 2 weeks, he would start again with > the seizures and they would need to increase it. it was a cycle... > how are barbiturates toxic for mito? can anyone explain to me how they > affect it? any info would be appreciated... , sometimes phenobarbital is the only alternative, and it has the advantage of being able to be given IV in an emergency as well as being able to give a large loading dose to get the levels up quickly. Sometimes that is the only concern, in an emergency situation and you just don't have a choice. Both of my girls were on phenabarb and my youngest appeared to do well on it. But she continued to deteriorate and we all assumed that it was the disease process. It wasn't until one of our doctors suggested that we switch to another anticonvulsant that we realized how much damage it was actually doing. It is my understanding that barbiturates like phenabarb impede mitochondrial function. This is not to say that some people can't use them, nor that some people don't tolerate them, as well as have no choice. But for us, there was clear deterioration that did resolve somewhat when we discontinued it. Unfortunately though, we used it for years and I'm not sure that we will ever recoup from the long term damage that was done, but at least her disease appears to be far more stable than ever before. Our mito doc feels that this is primarily because she is no longer on phenabarb. If your mitochondria aren't functioning at top capacity, then anything that further compromises that function can cause problems. Likewise, anything that you can do to boost the function of inefficient mitochondria also may help. For some people supplements play this role. Of course it is a very individual thing. My older daughter is not as severely affected as my younger one and for her the phenabarb didn't seem to have as negative effect. I do know that she did better once she was off it though. Hope this helps. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 In my daughter's case, phenobarb is necessary to control her seizures. We tried weaning her off of it but her seizures started up again. While I would prefer she not be on it, it seems a necessary evil in managing her problems. Barbara mom to Alison/22/melas liver transplant due to depakote toxicity In a message dated 02/12/2000 12:33 Eastern Standard Time, Jaz739@... writes: << i am confused and wondering why orion was put on phenobarb... i know they tried several different seizure meds before it, though... and they kept his level pretty high. even so, after maybe 2 weeks, he would start again with the seizures and they would need to increase it. it was a cycle... how are barbiturates toxic for mito? can anyone explain to me how they affect it? any info would be appreciated... >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 >> >> In a message dated 2/11/00 8:06:22 AM Eastern Standard Time, >> SDidinsky@... writes: >> >> << Phenobarbital is a barbiturate and barburates can be toxic for >> mitochondrial patients. >> >> i am confused and wondering why orion was put on phenobarb... i know they >> tried several different seizure meds before it, though... and they kept his >> level pretty high. even so, after maybe 2 weeks, he would start again with >> the seizures and they would need to increase it. it was a cycle... >> >> julia >> orion's mommy >> > , I don't know if this thought will help, but has also been tried with so many anticonvulsants and it is only the last couple of years that we have not faced status /ER situations where Jess would grand mal seize for 20 minutes to an hour even with intervention. The drug that NO one can believe has made the difference is Klonopin (now being used with Topimax)... I wonder if it was adding the Klonopin or removing the other toxic drugs altogether that has helped us gain control. Jess is now only having 6-7 grand mal seizures a month which is wonderful for her. Just thought it might help to see that sometimes it's other that the typical anti-seizure drugs that help the seizure control. Sharon 's mom Quote Link to comment Share on other sites More sharing options...
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