Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Kathy, are you saying the blueness around the mouth is a symptom of the mito? A number of our kids and grandkids have this ( & other places on the face like around the eyes and forehead) but we have never been able to figure out the why other than we finally say obviously they are not getting enough oxygen but it can't just be asthma as some of them don't have asthma. S. Re: Question - Lactic Acid > > >>From: Cheri77777@... >> >> >> >> >>>She becomes blue around the mouth, gasps for air, she says her limbs >>> >>>feel like bricks and she gets alot of reflux >> >> >>Becky, not to alarm you, but has a physician seen her with the blue around >>the lips? You may want to have that evaluated and at the every least >mention >>it to her primary doc. >> >>Cheri >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Don't know anything about PN401, but was wondering what the symptoms of lactic acidosis are? My son's LA was tested as normal, but I wonder if you need to be in a crisis for it to be high. He has only vomited twice in his life, once from the stomach flu, the other time I'm not sure why (overeating I think). He does not have seizures, etc., but does go through his irritable days where he is unbearable to be around. Is this a sign of high lactic acid? Or just a stubborn, opinionated two-year-old? " Sasser, Becky " wrote: > > > Speaking of lactic acid, 's lactic acid is always high, sometimes > higher then other times. I have often been very worried about her lactic > acid! However, Dr. Cohen told us 's problems are not from the lactic > acid. If we could get her complex's 2 & 3 working correctly together this > would solve her problems! Has any one heard any more about PN401? Becky > Question - Lactic Acid > > >From: KnoxVolNut@... > > > >What " red flags " could I watch for that might indicate an elevation in > 's > >lactic acid? > > > >Thanks! > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 In a message dated 9/16/99 4:41:52 AM Pacific Daylight Time, houllion@... writes: << disappointing, but NOTHING ever works for Grant. >> THis is how I feel most of the time to Gail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Becky - I have heard that the PN401 test is coming, but VERY slowly. It seems that the drug co. is trying to get FDA approval to begin the testing. We are just starting (today, in fact) to wean my son, Grant (11yrs, intractable szs) from his trial on Uridine (the precursor to PN401). He became noticeably worse at the onset, then drifted back into a slightly better, but no better than his baseline, pattern of seizures. Dr. Cohen said to discontinue it over the next two weeks - disappointing, but NOTHING ever works for Grant. Gail Sasser, Becky wrote: > > > > Speaking of lactic acid, 's lactic acid is always high, sometimes > higher then other times. I have often been very worried about her lactic > acid! However, Dr. Cohen told us 's problems are not from the lactic > acid. If we could get her complex's 2 & 3 working correctly together this > would solve her problems! Has any one heard any more about PN401? Becky > Question - Lactic Acid > > >From: KnoxVolNut@... > > > >What " red flags " could I watch for that might indicate an elevation in > 's > >lactic acid? > > > >Thanks! > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Speaking of lactic acid, 's lactic acid is always high, sometimes higher then other times. I have often been very worried about her lactic acid! However, Dr. Cohen told us 's problems are not from the lactic acid. If we could get her complex's 2 & 3 working correctly together this would solve her problems! Has any one heard any more about PN401? Becky Question - Lactic Acid >From: KnoxVolNut@... > >What " red flags " could I watch for that might indicate an elevation in 's >lactic acid? > >Thanks! > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 >She becomes blue around the mouth, gasps for air, she says her limbs > >feel like bricks and she gets alot of reflux Becky, not to alarm you, but has a physician seen her with the blue around the lips? You may want to have that evaluated and at the every least mention it to her primary doc. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Gail we will find something that works for Grant and all our kids!!!!! Becky Question - Lactic Acid >> >> >From: KnoxVolNut@... >> > >> >What " red flags " could I watch for that might indicate an elevation in >> 's >> >lactic acid? >> > >> >Thanks! >> > >> > >> > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 I can tell as soon as over exerts herself to much her lactic acid is higher. She becomes blue around the mouth, gasps for air, she says her limbs feel like bricks and she gets alot of reflux. is going to be 17 so she is becoming smarter and knows what will set this off. Needless, to say but she is still a teenager and sometimes she doesn't take her own warning signs serious. Becky Question - Lactic Acid >> >> >From: KnoxVolNut@... >> > >> >What " red flags " could I watch for that might indicate an elevation in >> 's >> >lactic acid? >> > >> >Thanks! >> > >> > >> > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Becky, I'm going to San Diego this Sunday to hopefully try this new drug on my son. What I heard is this drug stops the mito chondria from deteriorating any more than it is already .I have heard it works but is not approved yet. I feel at least it is something for him to try that might just help. I just called the UCSD of California and asked for the doctors to look over Jake's records to see if they thought if would work for him. They then asked us to come down,we live in Minnesota. He also has a very high lactic level and thats what they look for. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Becky - My son (complex IV) also has blue tinges around his mouth, on occasion. He is only three so can't tell me how he feels when this happens, but I can always tell it is a sign he is not feeling too good. I have never thought to mention it to his doctor, but after what you and Cheri have written I think I will. I thought it was just something that happened to . . > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Becky - My son (complex IV) also has blue tinges around his mouth, on occasion. He is only three so can't tell me how he feels when this happens, but I can always tell it is a sign he is not feeling too good. I have never thought to mention it to his doctor, but after what you and Cheri have written I think I will. I thought it was just something that happened to . . > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Becky - My son (complex IV) also has blue tinges around his mouth, on occasion. He is only three so can't tell me how he feels when this happens, but I can always tell it is a sign he is not feeling too good. I have never thought to mention it to his doctor, but after what you and Cheri have written I think I will. I thought it was just something that happened to . . > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Hi Cheri, 's neuro. knows about the blue around her mouth,she has seen a cardiologist(said slight murmur return visit in 3 yr.) Dr. Cohen said just a symptom of the mito. Thanks for asking. Becky Re: Question - Lactic Acid >From: Cheri77777@... > > > > >>She becomes blue around the mouth, gasps for air, she says her limbs >> >>feel like bricks and she gets alot of reflux > > >Becky, not to alarm you, but has a physician seen her with the blue around >the lips? You may want to have that evaluated and at the every least mention >it to her primary doc. > >Cheri > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 I found the comment from Dr Cohen about 's color changes very intriguing because has always had a blue cast around his lips, at the botom of his feet and his palms. We exhausted the pulm. and cardio. routes long ago and except for his rapid resps that are " normal " for him and the newly diagnosed asthma he checked out a-ok. Do you think this is a generality for kids with Mito or kids with Complex II-III like and ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 >I found the comment from Dr Cohen about 's color changes very >intriguing because has always had a blue cast around his lips, at >the >botom of his feet and his palms. We exhausted the pulm. and cardio. routes > >long ago and except for his rapid resps that are " normal " for him and the > >newly diagnosed asthma he checked out a-ok. Do you think this is a generality > >for kids with Mito or kids with Complex II-III like and ? > , I can't answer your question, but I can say that blueness IS a sign of specific difficulty with my and not just a broad symptom in general. He has however had spells of blue hands and feet for no apparent reason and perhaps that is what Dr. Cohen is referring to and not the cardio/pulmonary/autonomic stuff deals with as well. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 >I found the comment from Dr Cohen about 's color changes very >intriguing because has always had a blue cast around his lips, at >the >botom of his feet and his palms. We exhausted the pulm. and cardio. routes > >long ago and except for his rapid resps that are " normal " for him and the > >newly diagnosed asthma he checked out a-ok. Do you think this is a generality > >for kids with Mito or kids with Complex II-III like and ? > , I can't answer your question, but I can say that blueness IS a sign of specific difficulty with my and not just a broad symptom in general. He has however had spells of blue hands and feet for no apparent reason and perhaps that is what Dr. Cohen is referring to and not the cardio/pulmonary/autonomic stuff deals with as well. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 , One of the rist symptoms I ever noticed with Lexi was blueness around her mouth, on her forehead, and under her fingernails. She still gets this when she is fatigued, or when she is having a seizure. We have a pulse oxymeter at home to keep track of whether the bluing is an actual oxygen desaturation or just her doing her weird thing of turning blue. Usually, when she is a little blue but not seizing her sat levels go down to around 93 (nothing to really stress out about). But she has gone as low as 60%. So I think the anoxia is definately one of the mito symptoms. My $0.02 worth. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 , One of the rist symptoms I ever noticed with Lexi was blueness around her mouth, on her forehead, and under her fingernails. She still gets this when she is fatigued, or when she is having a seizure. We have a pulse oxymeter at home to keep track of whether the bluing is an actual oxygen desaturation or just her doing her weird thing of turning blue. Usually, when she is a little blue but not seizing her sat levels go down to around 93 (nothing to really stress out about). But she has gone as low as 60%. So I think the anoxia is definately one of the mito symptoms. My $0.02 worth. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 My son always had a chronic blueness around his mouth, as well as a blue tinge to his extremities . His hands and especially feet are like ice. We noticed that it would increase during physical therapy many times. last winter our cardiologist put him on a holter monitor for 48 hours. The results showed a normal sinus rhythm but the rate was extremely variable - 40-160 - with many runs of bradycardia, (slow heart rate). Our cardiologist feels that 's blueness is due to his autonomic nervous system dysfunction and describes these 2 reasons for the " exaggerated sinus arrhythmia " . 1. he has chronic gastro-esophogeal reflux which causes vagal nerve stimulation which in turn causes bradycardia 2. The autonomic nervous system is not " fine tuned " and therefore we see wide swings in rate. What is interesting and also supports this description of our cardiologist is that his blue spells decreased markedly when we took him off tube feedings and put him on intravenous feeds. Until a month ago we had been seeing a sharp decrease in his reflux and so too his blue spells. The past months the reflux has been quite significant again and we and his therapists and doctors have seen more of the circumoral blueness again. Anne - mom to Brittany, Zachary, Abby and (Zachary and Sam have complex 1 and 4 defect in OxPhos ) ---------- We exhausted the pulm. and cardio. routes > long ago and except for his rapid resps that are " normal " for him and the > newly diagnosed asthma he checked out a-ok. Do you think this is a generality > for kids with Mito or kids with Complex II-III like and ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 My son always had a chronic blueness around his mouth, as well as a blue tinge to his extremities . His hands and especially feet are like ice. We noticed that it would increase during physical therapy many times. last winter our cardiologist put him on a holter monitor for 48 hours. The results showed a normal sinus rhythm but the rate was extremely variable - 40-160 - with many runs of bradycardia, (slow heart rate). Our cardiologist feels that 's blueness is due to his autonomic nervous system dysfunction and describes these 2 reasons for the " exaggerated sinus arrhythmia " . 1. he has chronic gastro-esophogeal reflux which causes vagal nerve stimulation which in turn causes bradycardia 2. The autonomic nervous system is not " fine tuned " and therefore we see wide swings in rate. What is interesting and also supports this description of our cardiologist is that his blue spells decreased markedly when we took him off tube feedings and put him on intravenous feeds. Until a month ago we had been seeing a sharp decrease in his reflux and so too his blue spells. The past months the reflux has been quite significant again and we and his therapists and doctors have seen more of the circumoral blueness again. Anne - mom to Brittany, Zachary, Abby and (Zachary and Sam have complex 1 and 4 defect in OxPhos ) ---------- We exhausted the pulm. and cardio. routes > long ago and except for his rapid resps that are " normal " for him and the > newly diagnosed asthma he checked out a-ok. Do you think this is a generality > for kids with Mito or kids with Complex II-III like and ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Hi - I must have missed something - what is the drug?? Thanks - Gail PFlicek@... wrote: > > From: PFlicek@... > > Becky, > I'm going to San Diego this Sunday to hopefully try this new drug on my son. > What I heard is this drug stops the mito chondria from deteriorating any more > than it is already .I have heard it works but is not approved yet. > I feel at least it is something for him to try that might just help. I just > called the UCSD of California and asked for the doctors to look over Jake's > records to see if they thought if would work for him. > They then asked us to come down,we live in Minnesota. > He also has a very high lactic level and thats what they look for. > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 The heart problems make sense as we too have heart problems, mostly with the girls and the blueness and coldness is more in the girls hands and feet (the legs and feet get blotchy and tingle or hurt), whereas the blue in the boys in more around the mouth and nose and forehead. S. Re: Question - Lactic Acid > > >My son always had a chronic blueness around his mouth, as well as a >blue tinge to his extremities . His hands and especially feet are like >ice. We noticed that it would increase during physical therapy many times. > last winter our cardiologist put him on a holter monitor for 48 hours. >The results showed a normal sinus rhythm but the rate was extremely >variable - 40-160 - with many runs of bradycardia, (slow heart rate). Our >cardiologist feels that 's blueness is due to his autonomic nervous >system dysfunction and describes these 2 reasons for the " exaggerated sinus >arrhythmia " . >1. he has chronic gastro-esophogeal reflux which causes vagal nerve >stimulation which in turn causes bradycardia >2. The autonomic nervous system is not " fine tuned " and therefore we see >wide swings in rate. > >What is interesting and also supports this description of our cardiologist >is that his blue spells decreased markedly when we took him off tube >feedings and put him on intravenous feeds. Until a month ago we had been >seeing a sharp decrease in his reflux and so too his blue spells. The past >months the reflux has been quite significant again and we and his >therapists and doctors have seen more of the circumoral blueness again. > >Anne - mom to Brittany, Zachary, Abby and >(Zachary and Sam have complex 1 and 4 defect in OxPhos ) >---------- >We exhausted the pulm. and cardio. routes >> long ago and except for his rapid resps that are " normal " for him and the > >> newly diagnosed asthma he checked out a-ok. Do you think this is a >generality >> for kids with Mito or kids with Complex II-III like and ? > > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Hope this is not the case for the kids in question - but we experienced blueness around them mouth on an off with Kennedy - it turned out that her skeletal muscle was gradually weakening, particularly in her torso and diaghram. As a result, she lost the ability to breath and required ventilation. Like I said, hope it is not the case - there are lots of possible causes, but in our case it was mito. Kennedy's Dad Mito CIII deficiency, vent, g-tube Re: Question - Lactic Acid > > > > > >>From: Cheri77777@... > >> > >> > >> > >> > >>>She becomes blue around the mouth, gasps for air, she says her limbs > >>> > >>>feel like bricks and she gets alot of reflux > >> > >> > >>Becky, not to alarm you, but has a physician seen her with the blue around > >>the lips? You may want to have that evaluated and at the every least > >mention > >>it to her primary doc. > >> > >>Cheri > >> > >>> >>Brought to you by www.imdn.org - an on-line support group for those > >affected by mitochondrial disease. > > > > > >> >Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Hope this is not the case for the kids in question - but we experienced blueness around them mouth on an off with Kennedy - it turned out that her skeletal muscle was gradually weakening, particularly in her torso and diaghram. As a result, she lost the ability to breath and required ventilation. Like I said, hope it is not the case - there are lots of possible causes, but in our case it was mito. Kennedy's Dad Mito CIII deficiency, vent, g-tube Re: Question - Lactic Acid > > > > > >>From: Cheri77777@... > >> > >> > >> > >> > >>>She becomes blue around the mouth, gasps for air, she says her limbs > >>> > >>>feel like bricks and she gets alot of reflux > >> > >> > >>Becky, not to alarm you, but has a physician seen her with the blue around > >>the lips? You may want to have that evaluated and at the every least > >mention > >>it to her primary doc. > >> > >>Cheri > >> > >>> >>Brought to you by www.imdn.org - an on-line support group for those > >affected by mitochondrial disease. > > > > > >> >Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Hairston- My son Nolan, who is 4 1/2, experiences the blueness around the mouth. His muscle biopsy results were that he has rare skeletal muscle atrophy. His torso is weakening and he relies on his legs for muscle. His arches have fallen quite a bit, they were corrected a couple of years ago with cookies in his shoes. This muscle loss appears more extensive as it is very visible to the eye. His frozen biopsy was sent to Cleveland, I wish I knew then about the frozen vs. fresh. It came back fine, although his lactic acid was very elevated in his CSF and blood. What was the progession stage with Kennedy? Did she gradually turn more blue? We have an appointment with his neuro next week, he will be starting the vitamins this week (after some more blood tests tomorrow). I hope the neuro will prescribe something for sleep as we are utterly exhausted. Any input would be appreciated. Thank you. Michele-Mom to Nolan-undiagnosed mito and Alana-typical 3 1/2 year old Quote Link to comment Share on other sites More sharing options...
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