Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hey to all of you who are not at the conference! Hope your weekend has gotten off to a great start! Our has been riding her powerchair outside alot since it has gotten so hot here in Alabama. Just crusing up and down the street for something to do. Her friends dont come around much anymore because she cant do the things they like to do. Have any of you seen bad behavior and brain malfunction ( dont know what else to call it) after your child has been in the heat? I was awake most of last night trying to come up with some things to do that would be fun for her while it is so hot, but we both are sick of being at home. She has not been strong enough to travel the hour to get to a bigger town with other things to do. She has not been in school all year, she has homebound services one day a week through the summer months, and does stuff on Sat. with her dad and sleeps most of Sun. because she is so tired and in pain so she has not been in church to make friends. She is just lonley and sick of beeing with me. I just dont know what to do. She cries cause she cant do things like she used to and has no friends. I took her one afternoon to our small local boat landing here and she fished with a cane pole. It was really hot but I kept her hydrated and cool wrapps around her neck. With the heat and the excitment of catching a few SMALL....Small fish she was wipped. It took her five days of not getting dressed and being a couch/bed potato to catch up. Anyone have any suggestions? I just feel like I am letting her down as a mom. Got lots of stuff for us to bake together but her hands hurt her so bad she does not want to do that...I just dont know. Sorry I keep going on about this but it is tearing my heart out and I dont know what to do. HELP! Horsley mom to 12 Brittney 16 Re: Delayed Gastric Emptying << f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hey to all of you who are not at the conference! Hope your weekend has gotten off to a great start! Our has been riding her powerchair outside alot since it has gotten so hot here in Alabama. Just crusing up and down the street for something to do. Her friends dont come around much anymore because she cant do the things they like to do. Have any of you seen bad behavior and brain malfunction ( dont know what else to call it) after your child has been in the heat? I was awake most of last night trying to come up with some things to do that would be fun for her while it is so hot, but we both are sick of being at home. She has not been strong enough to travel the hour to get to a bigger town with other things to do. She has not been in school all year, she has homebound services one day a week through the summer months, and does stuff on Sat. with her dad and sleeps most of Sun. because she is so tired and in pain so she has not been in church to make friends. She is just lonley and sick of beeing with me. I just dont know what to do. She cries cause she cant do things like she used to and has no friends. I took her one afternoon to our small local boat landing here and she fished with a cane pole. It was really hot but I kept her hydrated and cool wrapps around her neck. With the heat and the excitment of catching a few SMALL....Small fish she was wipped. It took her five days of not getting dressed and being a couch/bed potato to catch up. Anyone have any suggestions? I just feel like I am letting her down as a mom. Got lots of stuff for us to bake together but her hands hurt her so bad she does not want to do that...I just dont know. Sorry I keep going on about this but it is tearing my heart out and I dont know what to do. HELP! Horsley mom to 12 Brittney 16 Re: Delayed Gastric Emptying << f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi , I am at the conference, but am taking a break 'cause I'm tired! :-) Great info and fellowship/networking however!!! Anyway, I don't know your family's job situation, etc., but I know that 's heat intolerance problems got MUCH better when we moved back to the Pacific NW (temp b Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi , I am at the conference, but am taking a break 'cause I'm tired! :-) Great info and fellowship/networking however!!! Anyway, I don't know your family's job situation, etc., but I know that 's heat intolerance problems got MUCH better when we moved back to the Pacific NW (temp b Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi , I am at the conference, but am taking a break 'cause I'm tired! :-) Great info and fellowship/networking however!!! Anyway, I don't know your family's job situation, etc., but I know that 's heat intolerance problems got MUCH better when we moved back to the Pacific NW (temp b Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Enjoy the conference and bring us back some good info! Wishing I could be there.... Horsley Re: Heat/Behavior Hi ,I am at the conference, but am taking a break 'cause I'm tired! :-) Great info and fellowship/networking however!!!Anyway, I don't know your family's job situation, etc., but I know that 's heat intolerance problems got MUCH better when we moved back to the Pacific NW (temp bPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 oops....temps here are between 40 and 70 most of the year with cool breezes. would have " melt downs " (behavior too, expressed with crying with him) when he got overheated in the Midwest (and when we've been on vacation in hot places since then.) I know it's a drastic change to consider (not really considering how beautiful it is in NW Washington/Oregon), but I'd do it again in a heartbeat for the helpful changes in . Our kiddos have enough t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 thanks Robin for your reply. Will keep you and yours in my prayers. Have a great week! Horsley Re: Heat/Behavior Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 thanks Robin for your reply. Will keep you and yours in my prayers. Have a great week! Horsley Re: Heat/Behavior Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Tom and , I understand what your daughter is going through. I am new to the powerchair thing myself as of January. I had to leave my job (teaching blind children) as well as school (junior in college) when I had two stroke episodes. It is very lonely. I am not able to go out with friends very much because of transportation, and I have noticed that I can't go many places with friends anymore. I live in the suburbs, and there just isn't much to do here; however, I can recomed a few things. Indoor things are great! Community theater, neighborhood school concerts, museums, the local shopping mall for lunch, the CVS for a special treat (new lip gloss is always a bonus for a young girl:)!), you could try girl day and give each other pedicures or facials, watercolors, writing, or even volunteering. There are lots of places that you could do volunteer work at (such as a nursing home) that allows you to go for short amounts of time, and makes you feel really rewarding, and as though you are doing something to help others. That feeling of accomplishment will carry you a long way. I have felt like a giant human lump these past six months, it is only now that I am really seeing how much there is that I can do and that I don't have to sit around the house all the time and be embarassed that there are things that I used to do, that I can't anymore. Good luck! Jenn > Hey to all of you who are not at the conference! > Hope your weekend has gotten off to a great start! > Our has been riding her powerchair outside alot since it has gotten so hot here in Alabama. Just crusing up and down the street for something to do. Her friends dont come around much anymore because she cant do the things they like to do. Have any of you seen bad behavior and brain malfunction ( dont know what else to call it) after your child has been in the heat? > I was awake most of last night trying to come up with some things to do that would be fun for her while it is so hot, but we both are sick of being at home. She has not been strong enough to travel the hour to get to a bigger town with other things to do. > She has not been in school all year, she has homebound services one day a week through the summer months, and does stuff on Sat. with her dad and sleeps most of Sun. because she is so tired and in pain so she has not been in church to make friends. She is just lonley and sick of beeing with me. I just dont know what to do. She cries cause she cant do things like she used to and has no friends. I took her one afternoon to our small local boat landing here and she fished with a cane pole. It was really hot but I kept her hydrated and cool wrapps around her neck. With the heat and the excitment of catching a few SMALL....Small fish she was wipped. It took her five days of not getting dressed and being a couch/bed potato to catch up. Anyone have any suggestions? I just feel like I am letting her down as a mom. Got lots of stuff for us to bake together but her hands hurt her so bad she does not want to do that...I just dont know. Sorry I keep going on about this but it is tearing my heart out and I dont know what to do. HELP! > Horsley > mom to 12 > Brittney 16 > > Re: Delayed Gastric Emptying > > > In a message dated 6/8/2002 8:39:11 AM Eastern Daylight Time, > krystena@b... writes: > > << f I am wrong about the Bicitra, do you know of any medication that does > such. He told me to figure out what medication it was and we would talk it > over. > >> > > Hi Krystena, > First and foremost, I am NOT a doctor or a pharmacist. I do know that > Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically > addresses lactic acid. In fact, I know it is used to buffer ketoacids in > 's case. I'd ask your doc or your pharmacist to explain this more > fully. *Anecdotally*, I know that many on the OAA list (with all sorts of > organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in > their children's leg pain getting better. That has been our experience. > 's " cramps " went away with the Bicitra. needed the Bicitra > AND Carnitor before his improved. > > What I have found, yet no one told us to expect it, is that **for **, > treating his acidosis (he has elevated urinary organic acids lactic acid, but > NOT blood level lactic acid, and he has extremely high ketone bodies) has > resulted in many of his other organ system problems (particularly GI and > pulmonary) improving IMMENSELY.) While we were previously treating reflux, > GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung > function), etc., all separately based on symptom, when the basic ketoacidosis > was treated for different reasons, everything (except muscle atrophy and heat > intolerance) improved. My personal opinion is that with the acidosis, > everything was " out of whack " and treating the acidosis eliminated the need > to treat a lot of those individual " symptoms. " But, again, I caution, this > might be unique to and 's ketone utilization disorder > situation. I do wonder if a lot of refractory reflux patients perhaps have > ketoacidosis though.....It's interesting that I don't see a single GI or > pulmonary doc here at the conference..although these are the specialists that > often see mito symptom patients before mito is considered. (reflux, > dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.). > > Hope this helps, > Dena > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 , have you thought about asking the closest community college if students in nursing, spec. ed, etc. could come to your house and work/play with ? we did that when we wanted students to help us out with Greenspan floortime with . The students got those credits they need in regards to community worktime. We arranged this with the heads of those departments. up front we said we could not afford to pay them as if they were therapists. They could come over and read together or whatever, just to give her other people to enjoy, and they would be young enough, hopefully, and mature enough, hopefully, to be like friends. Just a thought. cara Re: Delayed Gastric Emptying << f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 You've probably already covered this base, but what about swimming? If the water temp isn't extreme, and we're in Alabama too and the water is getting to a nice temp by afternoon, it might be relaxing and fun. If you could get to a pool with steps it would help. Like a said, you've probably already thought of this, but I thought I'd mention it. Good luck! Kim Re: Delayed Gastric Emptying << f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 You've probably already covered this base, but what about swimming? If the water temp isn't extreme, and we're in Alabama too and the water is getting to a nice temp by afternoon, it might be relaxing and fun. If you could get to a pool with steps it would help. Like a said, you've probably already thought of this, but I thought I'd mention it. Good luck! Kim Re: Delayed Gastric Emptying << f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 I'm sorry to ask, but do you mind telling me what kind of marks? Thanks, Kim Middpowell@... wrote: Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 I'm sorry to ask, but do you mind telling me what kind of marks? Thanks, Kim Middpowell@... wrote: Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 I'm sorry to ask, but do you mind telling me what kind of marks? Thanks, Kim Middpowell@... wrote: Hi , It's Robin, from RI, I have the same problems with my son. My parents take him to hte movies once a week(it's airconditioned), he likes that. But he is in pain for hours when he gets home fro not being able to stretch out, and move tired muscles. At home he usually sits at the computer. We rent DVDs, but finacially It's hard to do much else. My mother has a pool, he wont go in because his mito disease has left him with marks on his body, and he doesn't want anyone to see them. He won't wear a Tshirt because no one else does. I agree with you, it makes us feel helpless and terrible. But, remember we do the best we can, with what we have, and you wouldn't be so concerned if you weren't a wonderful mother. It's terrible that is sick, these diseases are so unforgiving, but is lucky to have you to guide her through it. If I can think of anything to help you I will let you know . Robin, Mom to and Sara Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Kim, has Stria (stretch marks) like you get when your pregnant. But his are all over his trunk. They are on his shoulders, on his neck, on his upper arms, but mostly on his back, chest, and stomach area. The endo. tested his cortisol levels which could cause these marks if they were high. They weren'y high, but we came to the conclusion that maybe his body doesn't deal with cortisol like everyones elses. on his upper arms he has this horrible rash, he has had it for years, but nothing we put on it will take it away. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Kim, has Stria (stretch marks) like you get when your pregnant. But his are all over his trunk. They are on his shoulders, on his neck, on his upper arms, but mostly on his back, chest, and stomach area. The endo. tested his cortisol levels which could cause these marks if they were high. They weren'y high, but we came to the conclusion that maybe his body doesn't deal with cortisol like everyones elses. on his upper arms he has this horrible rash, he has had it for years, but nothing we put on it will take it away. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Kim, has Stria (stretch marks) like you get when your pregnant. But his are all over his trunk. They are on his shoulders, on his neck, on his upper arms, but mostly on his back, chest, and stomach area. The endo. tested his cortisol levels which could cause these marks if they were high. They weren'y high, but we came to the conclusion that maybe his body doesn't deal with cortisol like everyones elses. on his upper arms he has this horrible rash, he has had it for years, but nothing we put on it will take it away. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Robin, I am sorry to sound so duhhhh here. What is coristol? Thanks so much, Kim Middpowell@... wrote: Kim, has Stria (stretch marks) like you get when your pregnant. But his are all over his trunk. They are on his shoulders, on his neck, on his upper arms, but mostly on his back, chest, and stomach area. The endo. tested his cortisol levels which could cause these marks if they were high. They weren'y high, but we came to the conclusion that maybe his body doesn't deal with cortisol like everyones elses. on his upper arms he has this horrible rash, he has had it for years, but nothing we put on it will take it away.Robin Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Robin, I am sorry to sound so duhhhh here. What is coristol? Thanks so much, Kim Middpowell@... wrote: Kim, has Stria (stretch marks) like you get when your pregnant. But his are all over his trunk. They are on his shoulders, on his neck, on his upper arms, but mostly on his back, chest, and stomach area. The endo. tested his cortisol levels which could cause these marks if they were high. They weren'y high, but we came to the conclusion that maybe his body doesn't deal with cortisol like everyones elses. on his upper arms he has this horrible rash, he has had it for years, but nothing we put on it will take it away.Robin Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Robin, I am sorry to sound so duhhhh here. What is coristol? Thanks so much, Kim Middpowell@... wrote: Kim, has Stria (stretch marks) like you get when your pregnant. But his are all over his trunk. They are on his shoulders, on his neck, on his upper arms, but mostly on his back, chest, and stomach area. The endo. tested his cortisol levels which could cause these marks if they were high. They weren'y high, but we came to the conclusion that maybe his body doesn't deal with cortisol like everyones elses. on his upper arms he has this horrible rash, he has had it for years, but nothing we put on it will take it away.Robin Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Hey Colby can't tolerate heat either, so he waits till the evening to go out. Colby is MR, and always happy, he plays video games when he's inside, and tears up everything leaving a Colby path of destruction. He is going to go to summer school, I am worried about the heat on the bus ride. Does anyone have any suggestions? I wonder if I should request an airconditioned van, I know they have them in the school district. Another IEP change, but might solve the problem. Do you have an IEP? See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthy Quote Link to comment Share on other sites More sharing options...
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