Guest guest Posted January 10, 1996 Report Share Posted January 10, 1996 While on the subject of air hunger, I would like to ask a question. Two of my children have possible Mito problems. Amy my eldest has mentioned on a few occasions when starting to walk or talk that she feels like she can't breathe. She has said that it is hard to explain but it feels like 'the oxygen can't get through'. Does this sound like air hunger or is it something quite different? Thanks, L. Air Hunger I need some advice regarding air hunger/breathing issues from you expert parents, please... Ben, who is 8 and has mito, has been having a progression of his symptoms during this past year. He now uses a CPAP at night due to hypopneas (shallow breathing) caused by chest muscle weakness and perhaps autonomic issues. He has been going through quite frequent air hunger spells lately during the day. I'm not sure if it is due to muscle weakness or metabolic issues (I've heard it described as the cells calling for more oxygen in an effort to try to create the lacking energy). I think I've been told it's probably both. The air hunger is really frustrating Ben. When I notice it, he usually says it is a 4 or 5 (on a 1 - 10 scale of how bad it is). Last night he asked, "Can't I take a medicine to fix it?" "What will happen when I get to a 10, will I die?" I didn't know what to tell him except that if that happened, we'd try the CPAP to see if it would settle it down or get him to the hospital to see if they could help. I don't have a pulse oximeter but suspect his oxygenation is really ok. During his sleep study, his oxygenation was ok, although the breathing was shallow. I've never checked the oxygen sats during the air hunger episodes. Has anyone tried adding oxygen at night to see if it relieves some of the daytime symptoms? Does oxygen use relieve the symptoms even if there is a normal oxygen saturation? Is this the early signs of the type of problem that eventually results in a kid having to be on a ventilator or is this a separate, more benign problem? Cindy (mom to Seth, 12, and Ben, 8, both with mito - and wife to great Daddy, Matt)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 cindy, hi, we use a bi-pap for jessica at night and oxygen as needed during the day with it also attached to the bi-pap at night. jess has the same problems you have described. we made a choice for jess not to go to a trach and vent situation only because she would never allow it to stay in. we have had a few good years using the o2. she has been needing more and more over the last year now. her pulse-ox number go all over the place so its not really a good way to check her, like you we just watch her and add the o2 when we notice her yawn or get sleepy. it works great. hope this helps some, michele, mom to jessica, mito- DNA depletion, intractable seizures, g-j tube, supra-pubic tube, dysautonomia, bi-pap, 02 dependant, MR, PDD, two port central line named george and nemo. and of course the largest collection of naked barbies in the world ( well almost) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 I really have no experience with it, but I wish the best for him. With him already having shallow breating, including the problems he is already having, is there a possibility it may be a panic attack? Obviously he is worried about it, because he has already made the comment about what if he gets to 10. Does he do this during his sleep? I do not know if this is even a possibility, but I have seen somone completely hyperventilate, finding out later is was a panic attack (before anyone even noticed she was upset.) I would definatly consult his pulmo doc. They should be able to do something for him. It is really not fair to think an 8 year old has to go through these things. I will be thinking about him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 I need some advice regarding air hunger/breathing issues from you expert parents, please... Ben, who is 8 and has mito, has been having a progression of his symptoms during this past year. He now uses a CPAP at night due to hypopneas (shallow breathing) caused by chest muscle weakness and perhaps autonomic issues. He has been going through quite frequent air hunger spells lately during the day. I'm not sure if it is due to muscle weakness or metabolic issues (I've heard it described as the cells calling for more oxygen in an effort to try to create the lacking energy). I think I've been told it's probably both. The air hunger is really frustrating Ben. When I notice it, he usually says it is a 4 or 5 (on a 1 - 10 scale of how bad it is). Last night he asked, "Can't I take a medicine to fix it?" "What will happen when I get to a 10, will I die?" I didn't know what to tell him except that if that happened, we'd try the CPAP to see if it would settle it down or get him to the hospital to see if they could help. I don't have a pulse oximeter but suspect his oxygenation is really ok. During his sleep study, his oxygenation was ok, although the breathing was shallow. I've never checked the oxygen sats during the air hunger episodes. Has anyone tried adding oxygen at night to see if it relieves some of the daytime symptoms? Does oxygen use relieve the symptoms even if there is a normal oxygen saturation? Is this the early signs of the type of problem that eventually results in a kid having to be on a ventilator or is this a separate, more benign problem? Cindy (mom to Seth, 12, and Ben, 8, both with mito - and wife to great Daddy, Matt) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Dear : Thank you so much for your response. I'm sorry of 's troubles. Did you make that move based on pulse ox readings, pulmonary studies, or symptoms? You say that now you watch symptoms.. I will be contacting the pulmonary doctor, I totally forgot to discuss this two weeks ago when we were there in sleep clinic, mostly because he wasn't doing it right at the time. Thanks, Cindy > cindy, > hi, we use a bi-pap for jessica at night and oxygen as needed during the day > with it also attached to the bi-pap at night. jess has the same problems you > have described. we made a choice for jess not to go to a trach and vent > situation only because she would never allow it to stay in. we have had a few good > years using the o2. she has been needing more and more over the last year now. > her pulse-ox number go all over the place so its not really a good way to > check her, like you we just watch her and add the o2 when we notice her yawn or > get sleepy. it works great. hope this helps some, > > > michele, mom to jessica, mito- DNA depletion, intractable seizures, g-j tube, > supra-pubic tube, dysautonomia, bi-pap, 02 dependant, MR, PDD, two port > central line named george and nemo. and of course the largest collection of naked > barbies in the world ( well almost) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Dear : Thanks so much for your response. I really don't think it is panic, since he does it a great deal of the time for weeks at a time, and then it stops for a while. I'll look in at him when he's laying on his bed reading and he can be doing it. Or when he's running around playing basketball. I am watching his moods carefully, since I'm aware of the great changes he's had to adapt to this past year. Before that, he was the " healthy " one of my two boys and that's a lot to adjust to. I can't see that he does it in his sleep, and he wears a cpap, so it's always blowing full breaths in to him. So, I think then he feels more satisfied and isn't looking for more air. That's my best guess anyway. I'll be contacting the pulmo doc but wanted to get input first. Thanks for your concern and suggestions. I appreciate it a lot. Cindy > I really have no experience with it, but I wish the best for him. With him > already having shallow breating, including the problems he is already having, > is there a possibility it may be a panic attack? Obviously he is worried about > it, because he has already made the comment about what if he gets to 10. > Does he do this during his sleep? I do not know if this is even a possibility, > but I have seen somone completely hyperventilate, finding out later is was a > panic attack (before anyone even noticed she was upset.) I would definatly > consult his pulmo doc. They should be able to do something for him. It is really > not fair to think an 8 year old has to go through these things. I will be > thinking about him. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Dear : I asked Ben if this is what it is like. He says, no, just that he needs to take a great big breath. I think it could possibly feel different to different people, especially kids. Cindy > While on the subject of air hunger, I would like to ask a question. > Two of my children have possible Mito problems. Amy my eldest has mentioned on a few occasions when starting to walk or talk that she feels like she can't breathe. She has said that it is hard to explain but it feels like 'the oxygen can't get through'. > Does this sound like air hunger or is it something quite different? > Thanks, > L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Cindy has many issues with air hunger She is on O2 most nights and during the day at many times she always carries a tank on her chairs her sats do drop as she starts to breath more shallow though you may want to try to barrow a sat monitor from the Dr. for a few days to monitor it we can go weeks with O2 but then be on it for weeks straight it always seems to be worst during stress as in illness or such or in a growth spurt Good luck hope this helps Cyndi Air Hunger I need some advice regarding air hunger/breathing issues from you expert parents, please... Ben, who is 8 and has mito, has been having a progression of his symptoms during this past year. He now uses a CPAP at night due to hypopneas (shallow breathing) caused by chest muscle weakness and perhaps autonomic issues. He has been going through quite frequent air hunger spells lately during the day. I'm not sure if it is due to muscle weakness or metabolic issues (I've heard it described as the cells calling for more oxygen in an effort to try to create the lacking energy). I think I've been told it's probably both. The air hunger is really frustrating Ben. When I notice it, he usually says it is a 4 or 5 (on a 1 - 10 scale of how bad it is). Last night he asked, "Can't I take a medicine to fix it?" "What will happen when I get to a 10, will I die?" I didn't know what to tell him except that if that happened, we'd try the CPAP to see if it would settle it down or get him to the hospital to see if they could help. I don't have a pulse oximeter but suspect his oxygenation is really ok. During his sleep study, his oxygenation was ok, although the breathing was shallow. I've never checked the oxygen sats during the air hunger episodes. Has anyone tried adding oxygen at night to see if it relieves some of the daytime symptoms? Does oxygen use relieve the symptoms even if there is a normal oxygen saturation? Is this the early signs of the type of problem that eventually results in a kid having to be on a ventilator or is this a separate, more benign problem? Cindy (mom to Seth, 12, and Ben, 8, both with mito - and wife to great Daddy, Matt)Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 I don't know if this will help or even if it has anything to do with your son's problem, but my son has had periods where he'd breathe really fast. Turned out to be caused by Lactic acidosis (or caused by something else that made the breathing cause the lactic acidosis...they never did really set me straight on that one.) Have the doctors checked your son's lactic acid? When it happened to Tarok, he was in the i.c.u. by the end of the day on a ventilator. It can get really bad quickly. He's doing ok now. At home, breathing just fine on his own. Good luck. > I need some advice regarding air hunger/breathing issues from you expert > parents, please... > > Ben, who is 8 and has mito, has been having a progression of his symptoms > during this past year. He now uses a CPAP at night due to hypopneas > (shallow breathing) caused by chest muscle weakness and perhaps autonomic > issues. He has been going through quite frequent air hunger spells lately > during the day. I'm not sure if it is due to muscle weakness or metabolic > issues (I've heard it described as the cells calling for more oxygen in an > effort to try to create the lacking energy). I think I've been told it's > probably both. The air hunger is really frustrating Ben. When I notice it, > he usually says it is a 4 or 5 (on a 1 - 10 scale of how bad it is). Last > night he asked, " Can't I take a medicine to fix it? " " What will happen when > I get to a 10, will I die? " I didn't know what to tell him except that if > that happened, we'd try the CPAP to see if it would settle it down or get > him to the hospital to see if they could help. I don't have a pulse > oximeter but suspect his oxygenation is really ok. During his sleep study, > his oxygenation was ok, although the breathing was shallow. I've never > checked the oxygen sats during the air hunger episodes. > > Has anyone tried adding oxygen at night to see if it relieves some of the > daytime symptoms? Does oxygen use relieve the symptoms even if there is a > normal oxygen saturation? Is this the early signs of the type of problem > that eventually results in a kid having to be on a ventilator or is this a > separate, more benign problem? > > Cindy (mom to Seth, 12, and Ben, 8, both with mito - and wife to great > Daddy, Matt) Quote Link to comment Share on other sites More sharing options...
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