Guest guest Posted December 9, 1999 Report Share Posted December 9, 1999 Hi Barbara, Alycia has mild difficulties with temperature control and her episodes were more frequent when she was younger (around your child's age). It is caused by Autonomic dysfunction which is a frequent complication of mitochondrial disease. Autonomic dysfunction symptoms can include difficulty in regulating temperature (unexplained fevers or chilling), sleeping difficulties, heart irregularites, breathing irregularities, sleeping disorders, and gastro-intestinal disturbances. Any of the functions that are controlled by " automatic " nerves can be affected. In Alycia's case, she will spike fevers for no apparant reason. The fever will go to about 103 and last perhaps an hour. Sometimes she will get overheated very quickly such that she gets red and sweaty. When this happens, I loosen her clothes and get cool water on her pulse points immediately and she'll usually cool back to normal within seconds. Her fingers and toes will get really cold even in the summer time, conversely, she may sweat even if it is winter time. There is no rhyme or reason to how her body reacts to its environment. This is what autonomic dysfunction is all about. As for the fevers, I have described these to the neurologist but I never felt like she believed me. I know my daycare providers believe me because they had seen it for themselves several times. They don't even bother to call me anymore when it happens since they know if they wait an hour, it will go away. However, when Alycia was hospitalized for her seizure, she spiked a sudden fever of 104 and then an hour later they were putting warming lights over her because her temperature plummeted to 94 degrees! The nurse asked me if she had a history of temperature control problems. Finally, a medical professional witnessed this bizarre phenomenon and I felt as if I had some credibility! Barbara wrote: > > > , > Hi, I have heard alot mentioned about fevers being a neurological > symptom of Mito. Is this true? You mention it in your note to Anne. My > 2 1/2 year old has low-grade fevers for weeks on end after any little > virus he gets. None of the docs we have seen seem to have an answer for > this. He also doesn't sleep well. And seems to get really tired. He > lays around all day. I worry about him. He has reflux and doesn't eat > much solid foods at all, but drinks chocolate milk all day long. I've > always thought his weakness may be do to not eating. I'm rambling. If > you know anything about mito and fever I'd appreciate any info you could > pass on. > Thanks for listening. I look forward to hearing from you. > Barbara > mom of 5, Max 2 1/2, reflux, and Corbin 14mths, probable mito, > reflux and asthma > > > 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 December 9, 1999 Report Share Posted December 9, 1999 This is odd. Alycia " runs " cool. Her normal temperature is 96.8 degrees. When she is up to 98.6, she is usually sick. I wonder if this means that she really doesn't have mito then? Steve Fitzgerald wrote: > > > For what it's worth, Dr. Kelley told me that kids with mito often " run warm " due to the body's ineffecient use > (or transport) of energy. My son has always felt warm to the touch, but never runs an internal fever. As far > as other autonomic dysfunctions, he has never slept through the night (age 32 months now), has chronic loose > stools, and poor attention span at times. Guess it's all connected somehow. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 sam and zach run cold too and yet run fevers for no reason as well. Sam especially worried me as many a night he will be 95-96 rectal. I think with him it may be the anemia that causes him to be that low. anne ---------- > For whatever it is worth, also " runs cool " , at exactly the same temp as Alycia does. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 For what it's worth, Dr. Kelley told me that kids with mito often " run warm " due to the body's ineffecient use (or transport) of energy. My son has always felt warm to the touch, but never runs an internal fever. As far as other autonomic dysfunctions, he has never slept through the night (age 32 months now), has chronic loose stools, and poor attention span at times. Guess it's all connected somehow. Downs wrote: > > > Hi Barbara, > > Alycia has mild difficulties with temperature control and her episodes were more frequent when she was > younger (around your child's age). It is caused by Autonomic dysfunction which is a frequent complication > of mitochondrial disease. > > Autonomic dysfunction symptoms can include difficulty in regulating temperature (unexplained fevers or > chilling), sleeping difficulties, heart irregularites, breathing irregularities, sleeping disorders, and > gastro-intestinal disturbances. Any of the functions that are controlled by " automatic " nerves can be > affected. > > In Alycia's case, she will spike fevers for no apparant reason. The fever will go to about 103 and last > perhaps an hour. Sometimes she will get overheated very quickly such that she gets red and sweaty. When > this happens, I loosen her clothes and get cool water on her pulse points immediately and she'll usually > cool back to normal within seconds. Her fingers and toes will get really cold even in the summer time, > conversely, she may sweat even if it is winter time. There is no rhyme or reason to how her body reacts > to its environment. This is what autonomic dysfunction is all about. > > As for the fevers, I have described these to the neurologist but I never felt like she believed me. I > know my daycare providers believe me because they had seen it for themselves several times. They don't > even bother to call me anymore when it happens since they know if they wait an hour, it will go away. > However, when Alycia was hospitalized for her seizure, she spiked a sudden fever of 104 and then an hour > later they were putting warming lights over her because her temperature plummeted to 94 degrees! The > nurse asked me if she had a history of temperature control problems. Finally, a medical professional > witnessed this bizarre phenomenon and I felt as if I had some credibility! > > Barbara wrote: > > > > > > > , > > Hi, I have heard alot mentioned about fevers being a neurological > > symptom of Mito. Is this true? You mention it in your note to Anne. My > > 2 1/2 year old has low-grade fevers for weeks on end after any little > > virus he gets. None of the docs we have seen seem to have an answer for > > this. He also doesn't sleep well. And seems to get really tired. He > > lays around all day. I worry about him. He has reflux and doesn't eat > > much solid foods at all, but drinks chocolate milk all day long. I've > > always thought his weakness may be do to not eating. I'm rambling. If > > you know anything about mito and fever I'd appreciate any info you could > > pass on. > > Thanks for listening. I look forward to hearing from you. > > Barbara > > mom of 5, Max 2 1/2, reflux, and Corbin 14mths, probable mito, > > reflux and asthma > > > > > 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 December 10, 1999 Report Share Posted December 10, 1999 For whatever it is worth, also " runs cool " , at exactly the same temp as Alycia does. He, too, is usually sick if his temperature hits 98.6. That temp is at least a sign to us that we need to watch him very carefully, as he is getting ill. I don't want to be negative in any way, just let you know that not all kids with mito run warm ( is a confirmed diagnosis). , mommy to Adrienne 7, Grace 2, and 11mos. (Pearson's Syndrome) Downs wrote: > > > This is odd. > Alycia " runs " cool. Her normal temperature is 96.8 degrees. When she is up to 98.6, she is usually sick. I > wonder if this means that she really doesn't have mito then? > > Steve Fitzgerald wrote: > > > > > > > For what it's worth, Dr. Kelley told me that kids with mito often " run warm " due to the body's ineffecient use > > (or transport) of energy. My son has always felt warm to the touch, but never runs an internal fever. As far > > as other autonomic dysfunctions, he has never slept through the night (age 32 months now), has chronic loose > > stools, and poor attention span at times. Guess it's all connected somehow. > > > > > > > > > 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...
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