Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 carrie, just a thought but do you check her blood pressure? due to jess's autonomic involvment her blood pressure jumps around alot. we use clonidine for blood pressure with the added bonus of the sleepiness side effect to help her go to sleep at night. hope this helps, Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 carrie, just a thought but do you check her blood pressure? due to jess's autonomic involvment her blood pressure jumps around alot. we use clonidine for blood pressure with the added bonus of the sleepiness side effect to help her go to sleep at night. hope this helps, Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 carrie, just a thought but do you check her blood pressure? due to jess's autonomic involvment her blood pressure jumps around alot. we use clonidine for blood pressure with the added bonus of the sleepiness side effect to help her go to sleep at night. hope this helps, Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 , It could be something with her autonomic nervous system. I get a flushed face sometimes for no explainable reason. It just comes and goes from time to time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 I am going to defiantly check out the BP. Grace has been very well known to have high blood pressure. They never started her on medicine for it because it is not always high. They have sent her to a cardiologist, nephrologist and found no reason for it, other than stress. She is seeing her GI next week so I will bring the issue up again. It would explain a lot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 I am going to defiantly check out the BP. Grace has been very well known to have high blood pressure. They never started her on medicine for it because it is not always high. They have sent her to a cardiologist, nephrologist and found no reason for it, other than stress. She is seeing her GI next week so I will bring the issue up again. It would explain a lot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 I am going to defiantly check out the BP. Grace has been very well known to have high blood pressure. They never started her on medicine for it because it is not always high. They have sent her to a cardiologist, nephrologist and found no reason for it, other than stress. She is seeing her GI next week so I will bring the issue up again. It would explain a lot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 , Emilie goes through cycles of having a flushed face nearly every day for weeks. In fact, it has happened so often that we call it her " mito cheeks " . In her case, her doctor says it is from autonomic dysfunction and that it's benign. I do think, though, that when Emilie has been having the flushed face--and her other autonomic symptoms--a lot, she's sometimes working up to a flareup of her mito, so if she starts turning colors, I do keep an eye out for other things. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 , Emilie goes through cycles of having a flushed face nearly every day for weeks. In fact, it has happened so often that we call it her " mito cheeks " . In her case, her doctor says it is from autonomic dysfunction and that it's benign. I do think, though, that when Emilie has been having the flushed face--and her other autonomic symptoms--a lot, she's sometimes working up to a flareup of her mito, so if she starts turning colors, I do keep an eye out for other things. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 , Emilie goes through cycles of having a flushed face nearly every day for weeks. In fact, it has happened so often that we call it her " mito cheeks " . In her case, her doctor says it is from autonomic dysfunction and that it's benign. I do think, though, that when Emilie has been having the flushed face--and her other autonomic symptoms--a lot, she's sometimes working up to a flareup of her mito, so if she starts turning colors, I do keep an eye out for other things. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 What is autonomic dysfunction? Many people have responded with this as a possible answer to her problems. I have seen it a lot, but do not have a definition. Thank you for your advise, and to all who have responded so far. I really don't know what I would do without you guys. I am already on a first name basis with most of my daughters nurses. They are always willing to help, but I realize they have other people they need to take care of too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 What is autonomic dysfunction? Many people have responded with this as a possible answer to her problems. I have seen it a lot, but do not have a definition. Thank you for your advise, and to all who have responded so far. I really don't know what I would do without you guys. I am already on a first name basis with most of my daughters nurses. They are always willing to help, but I realize they have other people they need to take care of too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 What is autonomic dysfunction? Many people have responded with this as a possible answer to her problems. I have seen it a lot, but do not have a definition. Thank you for your advise, and to all who have responded so far. I really don't know what I would do without you guys. I am already on a first name basis with most of my daughters nurses. They are always willing to help, but I realize they have other people they need to take care of too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi , My gets a red face and ears. When it is like this it is so hot to the touch and it is painful for her for me to touch it. Everything is fire red except around her mouth and it remains white. She has done this for years and we cant explain it and it can happen at any time. I wish I had the answer. Blessings to you and Grace, Horsley Red face? Hello all, hope everyone is doing well. Grace does not see Dr. Cohen until Feb. 27 and I have a concern maybe you guys can help me with. For at least the past few weeks Grace has been very flushed, her cheeks are almost always red, and the rest of her is sort of pale. If you try to picture a child with a real high fever, this is Grace. She has no fever, is not ill, and we do not have her out enough to get wind burn. Also, usually when she wakes up in the morning she is not red, but shaky and looks cold. But after she is awake for about a half hour or so, bright red. The rest of her body is normal looking, so this is only in her face. I am concerned it may be her blood sugar. She is usually pretty low, and uses the cornstarch at night. The cornstarch has still been working, as she is not waking up during the night. But I am having a horrible time getting her to go to sleep. She is also very moody lately. I really do not think she is ill, but the redness concerns me. If anyone has any advise I would really appreciate it. Sorry this is long. Thank You. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi , My gets a red face and ears. When it is like this it is so hot to the touch and it is painful for her for me to touch it. Everything is fire red except around her mouth and it remains white. She has done this for years and we cant explain it and it can happen at any time. I wish I had the answer. Blessings to you and Grace, Horsley Red face? Hello all, hope everyone is doing well. Grace does not see Dr. Cohen until Feb. 27 and I have a concern maybe you guys can help me with. For at least the past few weeks Grace has been very flushed, her cheeks are almost always red, and the rest of her is sort of pale. If you try to picture a child with a real high fever, this is Grace. She has no fever, is not ill, and we do not have her out enough to get wind burn. Also, usually when she wakes up in the morning she is not red, but shaky and looks cold. But after she is awake for about a half hour or so, bright red. The rest of her body is normal looking, so this is only in her face. I am concerned it may be her blood sugar. She is usually pretty low, and uses the cornstarch at night. The cornstarch has still been working, as she is not waking up during the night. But I am having a horrible time getting her to go to sleep. She is also very moody lately. I really do not think she is ill, but the redness concerns me. If anyone has any advise I would really appreciate it. Sorry this is long. Thank You. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi , My gets a red face and ears. When it is like this it is so hot to the touch and it is painful for her for me to touch it. Everything is fire red except around her mouth and it remains white. She has done this for years and we cant explain it and it can happen at any time. I wish I had the answer. Blessings to you and Grace, Horsley Red face? Hello all, hope everyone is doing well. Grace does not see Dr. Cohen until Feb. 27 and I have a concern maybe you guys can help me with. For at least the past few weeks Grace has been very flushed, her cheeks are almost always red, and the rest of her is sort of pale. If you try to picture a child with a real high fever, this is Grace. She has no fever, is not ill, and we do not have her out enough to get wind burn. Also, usually when she wakes up in the morning she is not red, but shaky and looks cold. But after she is awake for about a half hour or so, bright red. The rest of her body is normal looking, so this is only in her face. I am concerned it may be her blood sugar. She is usually pretty low, and uses the cornstarch at night. The cornstarch has still been working, as she is not waking up during the night. But I am having a horrible time getting her to go to sleep. She is also very moody lately. I really do not think she is ill, but the redness concerns me. If anyone has any advise I would really appreciate it. Sorry this is long. Thank You. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi. I got on the website this morning to ask the same question. Abbey's cheeks have been flu shed for a couple of weeks now and she has been cranky, too. I called the ped. and they said it is probably chapping since she's teething but I wasn't so sure. The blood pressure issue is very interesting. If you find anything out let me know. > Hello all, hope everyone is doing well. Grace does not see Dr. Cohen until > Feb. 27 and I have a concern maybe you guys can help me with. For at least the > past few weeks Grace has been very flushed, her cheeks are almost always red, > and the rest of her is sort of pale. If you try to picture a child with a > real high fever, this is Grace. She has no fever, is not ill, and we do not have > her out enough to get wind burn. Also, usually when she wakes up in the > morning she is not red, but shaky and looks cold. But after she is awake for > about a half hour or so, bright red. The rest of her body is normal looking, so > this is only in her face. I am concerned it may be her blood sugar. She is > usually pretty low, and uses the cornstarch at night. The cornstarch has still > been working, as she is not waking up during the night. But I am having a > horrible time getting her to go to sleep. She is also very moody lately. I > really do not think she is ill, but the redness concerns me. If anyone has any > advise I would really appreciate it. Sorry this is long. Thank You. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi. I got on the website this morning to ask the same question. Abbey's cheeks have been flu shed for a couple of weeks now and she has been cranky, too. I called the ped. and they said it is probably chapping since she's teething but I wasn't so sure. The blood pressure issue is very interesting. If you find anything out let me know. > Hello all, hope everyone is doing well. Grace does not see Dr. Cohen until > Feb. 27 and I have a concern maybe you guys can help me with. For at least the > past few weeks Grace has been very flushed, her cheeks are almost always red, > and the rest of her is sort of pale. If you try to picture a child with a > real high fever, this is Grace. She has no fever, is not ill, and we do not have > her out enough to get wind burn. Also, usually when she wakes up in the > morning she is not red, but shaky and looks cold. But after she is awake for > about a half hour or so, bright red. The rest of her body is normal looking, so > this is only in her face. I am concerned it may be her blood sugar. She is > usually pretty low, and uses the cornstarch at night. The cornstarch has still > been working, as she is not waking up during the night. But I am having a > horrible time getting her to go to sleep. She is also very moody lately. I > really do not think she is ill, but the redness concerns me. If anyone has any > advise I would really appreciate it. Sorry this is long. Thank You. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi. I got on the website this morning to ask the same question. Abbey's cheeks have been flu shed for a couple of weeks now and she has been cranky, too. I called the ped. and they said it is probably chapping since she's teething but I wasn't so sure. The blood pressure issue is very interesting. If you find anything out let me know. > Hello all, hope everyone is doing well. Grace does not see Dr. Cohen until > Feb. 27 and I have a concern maybe you guys can help me with. For at least the > past few weeks Grace has been very flushed, her cheeks are almost always red, > and the rest of her is sort of pale. If you try to picture a child with a > real high fever, this is Grace. She has no fever, is not ill, and we do not have > her out enough to get wind burn. Also, usually when she wakes up in the > morning she is not red, but shaky and looks cold. But after she is awake for > about a half hour or so, bright red. The rest of her body is normal looking, so > this is only in her face. I am concerned it may be her blood sugar. She is > usually pretty low, and uses the cornstarch at night. The cornstarch has still > been working, as she is not waking up during the night. But I am having a > horrible time getting her to go to sleep. She is also very moody lately. I > really do not think she is ill, but the redness concerns me. If anyone has any > advise I would really appreciate it. Sorry this is long. Thank You. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 My children all currently have fifths disease which is also called the slapped cheek disease. It is a viral infection that is going around. I beleive that got in while inpatient. It can also cause a lacy skin discloration/rash, but more noticable is the slapped cheek affect(more prominent when the children are warm like in the bath). The other issues present like the flu or there may not even be any other symptoms at all. She has had flushing before, but not like tis. This is more than the typical dysautonomic flushing. Just wanted to pass this along. It is also called human parvo virus b19. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 A couple of my girls have the bright red cheeks. Leah (13) has them regularly and she always looks like she wears blush. Asenath too has them and they get much redder during bedtime. The blood pressure idea really makes me wonder for Asenath because the issue has been worse since being on steroids which has definitely raised her blood pressure. I don't have any answers either but would love to hear if anyone does know. Darla: mommy to Asenath and the gang Re: Red face? ,Emilie goes through cycles of having a flushed face nearly every day for weeks. In fact, it has happened so often that we call it her "mito cheeks". In her case, her doctor says it is from autonomic dysfunction and that it's benign. I do think, though, that when Emilie has been having the flushed face--and her other autonomic symptoms--a lot, she's sometimes working up to a flareup of her mito, so if she starts turning colors, I do keep an eye out for other things. -- Mom to:Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptomsIan (22) migraines...and wife to Tim, who has a heart of goldPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 A couple of my girls have the bright red cheeks. Leah (13) has them regularly and she always looks like she wears blush. Asenath too has them and they get much redder during bedtime. The blood pressure idea really makes me wonder for Asenath because the issue has been worse since being on steroids which has definitely raised her blood pressure. I don't have any answers either but would love to hear if anyone does know. Darla: mommy to Asenath and the gang Re: Red face? ,Emilie goes through cycles of having a flushed face nearly every day for weeks. In fact, it has happened so often that we call it her "mito cheeks". In her case, her doctor says it is from autonomic dysfunction and that it's benign. I do think, though, that when Emilie has been having the flushed face--and her other autonomic symptoms--a lot, she's sometimes working up to a flareup of her mito, so if she starts turning colors, I do keep an eye out for other things. -- Mom to:Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptomsIan (22) migraines...and wife to Tim, who has a heart of goldPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 A couple of my girls have the bright red cheeks. Leah (13) has them regularly and she always looks like she wears blush. Asenath too has them and they get much redder during bedtime. The blood pressure idea really makes me wonder for Asenath because the issue has been worse since being on steroids which has definitely raised her blood pressure. I don't have any answers either but would love to hear if anyone does know. Darla: mommy to Asenath and the gang Re: Red face? ,Emilie goes through cycles of having a flushed face nearly every day for weeks. In fact, it has happened so often that we call it her "mito cheeks". In her case, her doctor says it is from autonomic dysfunction and that it's benign. I do think, though, that when Emilie has been having the flushed face--and her other autonomic symptoms--a lot, she's sometimes working up to a flareup of her mito, so if she starts turning colors, I do keep an eye out for other things. -- Mom to:Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptomsIan (22) migraines...and wife to Tim, who has a heart of goldPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 >What is autonomic dysfunction? It is when the brain does not do a good job regulating the functions that we don't consciously control--like blood pressure, temperature, and heart rate. There seem to be a lot of our kids who have problems with autonomic dysfunction. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 >What is autonomic dysfunction? It is when the brain does not do a good job regulating the functions that we don't consciously control--like blood pressure, temperature, and heart rate. There seem to be a lot of our kids who have problems with autonomic dysfunction. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
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