Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 > Kass Could the pain medication be making her sleepy? I know some people's reaction to the pain med. is to be slightly dopey or slow all the time. Can you cut back or stop one medicine/supplement until you get a good increase in energy? Working with the docs of course to minimize reactions. Maybe Zertec would have less reactions than Zantac. (Same type of reflux drug but the next generation). I am sorry things are so frustrating for you now but happy that some bright spots are sparking. Twana > She's on 300mgs Neurontin at night to hopefully control ... >neuropathy pain... >The Zantac appears to be controlling her reflux... > less energy right now than she did BEFORE > starting the supplements.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 > Kass Could the pain medication be making her sleepy? I know some people's reaction to the pain med. is to be slightly dopey or slow all the time. Can you cut back or stop one medicine/supplement until you get a good increase in energy? Working with the docs of course to minimize reactions. Maybe Zertec would have less reactions than Zantac. (Same type of reflux drug but the next generation). I am sorry things are so frustrating for you now but happy that some bright spots are sparking. Twana > She's on 300mgs Neurontin at night to hopefully control ... >neuropathy pain... >The Zantac appears to be controlling her reflux... > less energy right now than she did BEFORE > starting the supplements.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Lily really benefited from an IV when lethargic from something unknown. Slight fever.Slow. I could get them in the Urgent Care so it was easier on the Insurance/$$ end. Dextrose/Saline. Best of Luck. ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Kass, Can she tell you if she has a headache.. this flu going around here is a stupenis headache.. and you just have to lie there. Can she tell you if her head hurts? Who knows now if that is why my husband wound up in the hospital. But then you also say that she is being treated for neuropathy pain. Understand your worries about Madison. Hope she perks up soon! Congrats on DH getting a job! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Kass, Can she tell you if she has a headache.. this flu going around here is a stupenis headache.. and you just have to lie there. Can she tell you if her head hurts? Who knows now if that is why my husband wound up in the hospital. But then you also say that she is being treated for neuropathy pain. Understand your worries about Madison. Hope she perks up soon! Congrats on DH getting a job! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Kass, I am just wondering about the nutritional issues. Before Cameron's g-tube he fit the description of Madison to a T. He was just a baby, but I have seen this happen to him after an illness and before he can tolerate his feeds and keep all meds down. Now, you said you were open to suggestions, so here goes ... have they ever suggested a g-tube? You said she gets low blood sugar but sometimes does not eat. I wonder if you were always able to get nutrition in her (via tube) even when she wouldn't/couldn't eat orally would that make a huge difference??? Just thought I might run the thought by you. MadisonHi guys :-)Still sitting her beyond excited about DH's new job (for those that Ihaven't had a chance to share the news with, DH IS GAINFULLY EMPLOYEDFINALLY!!), though Madison's health is worrying DH and I a great deal.Not sure what to say other than that she is absolutly and completelywiped out. Went back to school Monday morning, VERY tired butapparently managed to make it through the morning, my mom picked her upat 1, they had ice cream and came to meet me at the Dentist with Chanceand Abby, and soon thereafter Madison had what I think was a blood sugarepisode with uncontrollable crying, totally limp, looked bad, etc etc.Got some other food in her and her overall demeanor improved but she wasobviously totally wiped out. She doesn't go to sleep really, just isbarely moving. Literally could not get her to open her eyes Tuesdaymorning when we got her up for school and it looked like she had justbroken a fever, so we kept her home. She slept till 11, got up but wentdirectly to the couch where she laid till about 5, when she in themiddle of cartoons no less asked if she could go to bed she was sotired. She did though couldn't fall asleep and was back on the couch byabout 6. Had dinner which she barely touched and was in bed by 8 andwas asleep by 9. Slept till 10 this morning and has again done nothingbut lay around all morning, though is playing a little while layingdown. Additionally, in that my main puter is on the blink I am workingon the one in the room where Madison sleeps and have listened to hermoan and cry out in her sleep almost the entire night for three nightsnow. She never fully wakes up and I cannot determine what is hurtingher, but something appears to be. I am sure this disturbed sleep is nothelping with the daytime sleepies.She feels like she might have a low grade fever off and on, had a BMlast night that was normal, no increase in urinary frequency, nodischarge from her ears, so I really don't have a clue what to think.She rested a TON while on vacation from school and so I cannot fathomwhy she is so incredibly wiped out. This has been progressively gettingworse since school started and has definatly hit an all time low at themoment.She's on 300mgs Neurontin at night to hopefully control what Dr. Cohenfeels is neuropathy pain that we know from her sleep study was awakeningher a great deal every night, and it seemed to be doing the trick untilthe last week or so. The Zantac appears to be controlling her reflux.I just need someone to give me some ideas. Do I just keep watchingher?? Told her yesterday that if she tells us she is too tired to go toschool we will not make her go, though if this happens alot we HAVE toconsider her staying home for school. I can do this with Mad because Iknow she really wants to be at school so will not abuse it.....also wanther to feel like she CAN tell me when she is just too wiped out,something that has traditionally been hard for her. Actually worst casescenario I see is her NOT telling me she feels bad for fear she won't beable to go to schoo rather than the other way around. With that said,she told me this morning she is not sure she is gonna be able to make itto school tomorrow, which to me means she is REALLY not doing well rightnow.Its all just so freaking non descript, but there is SOMETHING going onwith this child. She has less energy right now than she did BEFOREstarting the supplements which means she's moving LESS THAN 10% of thetime (and its really probably closer to 1% of the time). Just not surewhere tohead or even what to look for at the moment and need any ideas you allmighthave for me PLEASE!!!!!BIG hugs,Kass.....who is STILL staying excited and trying to not let this bug metoo much....LOL.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Kass, I am just wondering about the nutritional issues. Before Cameron's g-tube he fit the description of Madison to a T. He was just a baby, but I have seen this happen to him after an illness and before he can tolerate his feeds and keep all meds down. Now, you said you were open to suggestions, so here goes ... have they ever suggested a g-tube? You said she gets low blood sugar but sometimes does not eat. I wonder if you were always able to get nutrition in her (via tube) even when she wouldn't/couldn't eat orally would that make a huge difference??? Just thought I might run the thought by you. MadisonHi guys :-)Still sitting her beyond excited about DH's new job (for those that Ihaven't had a chance to share the news with, DH IS GAINFULLY EMPLOYEDFINALLY!!), though Madison's health is worrying DH and I a great deal.Not sure what to say other than that she is absolutly and completelywiped out. Went back to school Monday morning, VERY tired butapparently managed to make it through the morning, my mom picked her upat 1, they had ice cream and came to meet me at the Dentist with Chanceand Abby, and soon thereafter Madison had what I think was a blood sugarepisode with uncontrollable crying, totally limp, looked bad, etc etc.Got some other food in her and her overall demeanor improved but she wasobviously totally wiped out. She doesn't go to sleep really, just isbarely moving. Literally could not get her to open her eyes Tuesdaymorning when we got her up for school and it looked like she had justbroken a fever, so we kept her home. She slept till 11, got up but wentdirectly to the couch where she laid till about 5, when she in themiddle of cartoons no less asked if she could go to bed she was sotired. She did though couldn't fall asleep and was back on the couch byabout 6. Had dinner which she barely touched and was in bed by 8 andwas asleep by 9. Slept till 10 this morning and has again done nothingbut lay around all morning, though is playing a little while layingdown. Additionally, in that my main puter is on the blink I am workingon the one in the room where Madison sleeps and have listened to hermoan and cry out in her sleep almost the entire night for three nightsnow. She never fully wakes up and I cannot determine what is hurtingher, but something appears to be. I am sure this disturbed sleep is nothelping with the daytime sleepies.She feels like she might have a low grade fever off and on, had a BMlast night that was normal, no increase in urinary frequency, nodischarge from her ears, so I really don't have a clue what to think.She rested a TON while on vacation from school and so I cannot fathomwhy she is so incredibly wiped out. This has been progressively gettingworse since school started and has definatly hit an all time low at themoment.She's on 300mgs Neurontin at night to hopefully control what Dr. Cohenfeels is neuropathy pain that we know from her sleep study was awakeningher a great deal every night, and it seemed to be doing the trick untilthe last week or so. The Zantac appears to be controlling her reflux.I just need someone to give me some ideas. Do I just keep watchingher?? Told her yesterday that if she tells us she is too tired to go toschool we will not make her go, though if this happens alot we HAVE toconsider her staying home for school. I can do this with Mad because Iknow she really wants to be at school so will not abuse it.....also wanther to feel like she CAN tell me when she is just too wiped out,something that has traditionally been hard for her. Actually worst casescenario I see is her NOT telling me she feels bad for fear she won't beable to go to schoo rather than the other way around. With that said,she told me this morning she is not sure she is gonna be able to make itto school tomorrow, which to me means she is REALLY not doing well rightnow.Its all just so freaking non descript, but there is SOMETHING going onwith this child. She has less energy right now than she did BEFOREstarting the supplements which means she's moving LESS THAN 10% of thetime (and its really probably closer to 1% of the time). Just not surewhere tohead or even what to look for at the moment and need any ideas you allmighthave for me PLEASE!!!!!BIG hugs,Kass.....who is STILL staying excited and trying to not let this bug metoo much....LOL.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Kass, I am just wondering about the nutritional issues. Before Cameron's g-tube he fit the description of Madison to a T. He was just a baby, but I have seen this happen to him after an illness and before he can tolerate his feeds and keep all meds down. Now, you said you were open to suggestions, so here goes ... have they ever suggested a g-tube? You said she gets low blood sugar but sometimes does not eat. I wonder if you were always able to get nutrition in her (via tube) even when she wouldn't/couldn't eat orally would that make a huge difference??? Just thought I might run the thought by you. MadisonHi guys :-)Still sitting her beyond excited about DH's new job (for those that Ihaven't had a chance to share the news with, DH IS GAINFULLY EMPLOYEDFINALLY!!), though Madison's health is worrying DH and I a great deal.Not sure what to say other than that she is absolutly and completelywiped out. Went back to school Monday morning, VERY tired butapparently managed to make it through the morning, my mom picked her upat 1, they had ice cream and came to meet me at the Dentist with Chanceand Abby, and soon thereafter Madison had what I think was a blood sugarepisode with uncontrollable crying, totally limp, looked bad, etc etc.Got some other food in her and her overall demeanor improved but she wasobviously totally wiped out. She doesn't go to sleep really, just isbarely moving. Literally could not get her to open her eyes Tuesdaymorning when we got her up for school and it looked like she had justbroken a fever, so we kept her home. She slept till 11, got up but wentdirectly to the couch where she laid till about 5, when she in themiddle of cartoons no less asked if she could go to bed she was sotired. She did though couldn't fall asleep and was back on the couch byabout 6. Had dinner which she barely touched and was in bed by 8 andwas asleep by 9. Slept till 10 this morning and has again done nothingbut lay around all morning, though is playing a little while layingdown. Additionally, in that my main puter is on the blink I am workingon the one in the room where Madison sleeps and have listened to hermoan and cry out in her sleep almost the entire night for three nightsnow. She never fully wakes up and I cannot determine what is hurtingher, but something appears to be. I am sure this disturbed sleep is nothelping with the daytime sleepies.She feels like she might have a low grade fever off and on, had a BMlast night that was normal, no increase in urinary frequency, nodischarge from her ears, so I really don't have a clue what to think.She rested a TON while on vacation from school and so I cannot fathomwhy she is so incredibly wiped out. This has been progressively gettingworse since school started and has definatly hit an all time low at themoment.She's on 300mgs Neurontin at night to hopefully control what Dr. Cohenfeels is neuropathy pain that we know from her sleep study was awakeningher a great deal every night, and it seemed to be doing the trick untilthe last week or so. The Zantac appears to be controlling her reflux.I just need someone to give me some ideas. Do I just keep watchingher?? Told her yesterday that if she tells us she is too tired to go toschool we will not make her go, though if this happens alot we HAVE toconsider her staying home for school. I can do this with Mad because Iknow she really wants to be at school so will not abuse it.....also wanther to feel like she CAN tell me when she is just too wiped out,something that has traditionally been hard for her. Actually worst casescenario I see is her NOT telling me she feels bad for fear she won't beable to go to schoo rather than the other way around. With that said,she told me this morning she is not sure she is gonna be able to make itto school tomorrow, which to me means she is REALLY not doing well rightnow.Its all just so freaking non descript, but there is SOMETHING going onwith this child. She has less energy right now than she did BEFOREstarting the supplements which means she's moving LESS THAN 10% of thetime (and its really probably closer to 1% of the time). Just not surewhere tohead or even what to look for at the moment and need any ideas you allmighthave for me PLEASE!!!!!BIG hugs,Kass.....who is STILL staying excited and trying to not let this bug metoo much....LOL.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Kass, Congrats to DH ( and ALL) on new employment. Sorry Madison is not feeling well. Do you think she might be dehydrated? I know when was getting dehydrated the tired,sleeping most of the time was a good sign we needed an IV. I think what would bother me the most about these times would be how STILL she could be. I just cannot imagine anyone too tired to even lift their arm,but WOULD be this tired. Hope Madison gets better real quick!! , Mom to Madison > Hi guys :-) > > Still sitting her beyond excited about DH's new job (for those that I > haven't had a chance to share the news with, DH IS GAINFULLY EMPLOYED > FINALLY!!), though Madison's health is worrying DH and I a great deal. > > Not sure what to say other than that she is absolutly and completely > wiped out. Went back to school Monday morning, VERY tired but > apparently managed to make it through the morning, my mom picked her up > at 1, they had ice cream and came to meet me at the Dentist with Chance > and Abby, and soon thereafter Madison had what I think was a blood sugar > > episode with uncontrollable crying, totally limp, looked bad, etc etc. > Got some other food in her and her overall demeanor improved but she was > > obviously totally wiped out. She doesn't go to sleep really, just is > barely moving. Literally could not get her to open her eyes Tuesday > morning when we got her up for school and it looked like she had just > broken a fever, so we kept her home. She slept till 11, got up but went > > directly to the couch where she laid till about 5, when she in the > middle of cartoons no less asked if she could go to bed she was so > tired. She did though couldn't fall asleep and was back on the couch by > > about 6. Had dinner which she barely touched and was in bed by 8 and > was asleep by 9. Slept till 10 this morning and has again done nothing > but lay around all morning, though is playing a little while laying > down. Additionally, in that my main puter is on the blink I am working > on the one in the room where Madison sleeps and have listened to her > moan and cry out in her sleep almost the entire night for three nights > now. She never fully wakes up and I cannot determine what is hurting > her, but something appears to be. I am sure this disturbed sleep is not > > helping with the daytime sleepies. > > She feels like she might have a low grade fever off and on, had a BM > last night that was normal, no increase in urinary frequency, no > discharge from her ears, so I really don't have a clue what to think. > She rested a TON while on vacation from school and so I cannot fathom > why she is so incredibly wiped out. This has been progressively getting > > worse since school started and has definatly hit an all time low at the > moment. > > She's on 300mgs Neurontin at night to hopefully control what Dr. Cohen > feels is neuropathy pain that we know from her sleep study was awakening > > her a great deal every night, and it seemed to be doing the trick until > the last week or so. The Zantac appears to be controlling her reflux. > > I just need someone to give me some ideas. Do I just keep watching > her?? Told her yesterday that if she tells us she is too tired to go to > > school we will not make her go, though if this happens alot we HAVE to > consider her staying home for school. I can do this with Mad because I > know she really wants to be at school so will not abuse it.....also want > > her to feel like she CAN tell me when she is just too wiped out, > something that has traditionally been hard for her. Actually worst case > > scenario I see is her NOT telling me she feels bad for fear she won't be > > able to go to schoo rather than the other way around. With that said, > she told me this morning she is not sure she is gonna be able to make it > > to school tomorrow, which to me means she is REALLY not doing well right > > now. > > Its all just so freaking non descript, but there is SOMETHING going on > with this child. She has less energy right now than she did BEFORE > starting the supplements which means she's moving LESS THAN 10% of the > time (and its really probably closer to 1% of the time). Just not sure > where to > head or even what to look for at the moment and need any ideas you all > might > have for me PLEASE!!!!! > > BIG hugs, > Kass.....who is STILL staying excited and trying to not let this bug me > too much....LOL. > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Kass, Congrats to DH ( and ALL) on new employment. Sorry Madison is not feeling well. Do you think she might be dehydrated? I know when was getting dehydrated the tired,sleeping most of the time was a good sign we needed an IV. I think what would bother me the most about these times would be how STILL she could be. I just cannot imagine anyone too tired to even lift their arm,but WOULD be this tired. Hope Madison gets better real quick!! , Mom to Madison > Hi guys :-) > > Still sitting her beyond excited about DH's new job (for those that I > haven't had a chance to share the news with, DH IS GAINFULLY EMPLOYED > FINALLY!!), though Madison's health is worrying DH and I a great deal. > > Not sure what to say other than that she is absolutly and completely > wiped out. Went back to school Monday morning, VERY tired but > apparently managed to make it through the morning, my mom picked her up > at 1, they had ice cream and came to meet me at the Dentist with Chance > and Abby, and soon thereafter Madison had what I think was a blood sugar > > episode with uncontrollable crying, totally limp, looked bad, etc etc. > Got some other food in her and her overall demeanor improved but she was > > obviously totally wiped out. She doesn't go to sleep really, just is > barely moving. Literally could not get her to open her eyes Tuesday > morning when we got her up for school and it looked like she had just > broken a fever, so we kept her home. She slept till 11, got up but went > > directly to the couch where she laid till about 5, when she in the > middle of cartoons no less asked if she could go to bed she was so > tired. She did though couldn't fall asleep and was back on the couch by > > about 6. Had dinner which she barely touched and was in bed by 8 and > was asleep by 9. Slept till 10 this morning and has again done nothing > but lay around all morning, though is playing a little while laying > down. Additionally, in that my main puter is on the blink I am working > on the one in the room where Madison sleeps and have listened to her > moan and cry out in her sleep almost the entire night for three nights > now. She never fully wakes up and I cannot determine what is hurting > her, but something appears to be. I am sure this disturbed sleep is not > > helping with the daytime sleepies. > > She feels like she might have a low grade fever off and on, had a BM > last night that was normal, no increase in urinary frequency, no > discharge from her ears, so I really don't have a clue what to think. > She rested a TON while on vacation from school and so I cannot fathom > why she is so incredibly wiped out. This has been progressively getting > > worse since school started and has definatly hit an all time low at the > moment. > > She's on 300mgs Neurontin at night to hopefully control what Dr. Cohen > feels is neuropathy pain that we know from her sleep study was awakening > > her a great deal every night, and it seemed to be doing the trick until > the last week or so. The Zantac appears to be controlling her reflux. > > I just need someone to give me some ideas. Do I just keep watching > her?? Told her yesterday that if she tells us she is too tired to go to > > school we will not make her go, though if this happens alot we HAVE to > consider her staying home for school. I can do this with Mad because I > know she really wants to be at school so will not abuse it.....also want > > her to feel like she CAN tell me when she is just too wiped out, > something that has traditionally been hard for her. Actually worst case > > scenario I see is her NOT telling me she feels bad for fear she won't be > > able to go to schoo rather than the other way around. With that said, > she told me this morning she is not sure she is gonna be able to make it > > to school tomorrow, which to me means she is REALLY not doing well right > > now. > > Its all just so freaking non descript, but there is SOMETHING going on > with this child. She has less energy right now than she did BEFORE > starting the supplements which means she's moving LESS THAN 10% of the > time (and its really probably closer to 1% of the time). Just not sure > where to > head or even what to look for at the moment and need any ideas you all > might > have for me PLEASE!!!!! > > BIG hugs, > Kass.....who is STILL staying excited and trying to not let this bug me > too much....LOL. > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Kass, Congrats to DH ( and ALL) on new employment. Sorry Madison is not feeling well. Do you think she might be dehydrated? I know when was getting dehydrated the tired,sleeping most of the time was a good sign we needed an IV. I think what would bother me the most about these times would be how STILL she could be. I just cannot imagine anyone too tired to even lift their arm,but WOULD be this tired. Hope Madison gets better real quick!! , Mom to Madison > Hi guys :-) > > Still sitting her beyond excited about DH's new job (for those that I > haven't had a chance to share the news with, DH IS GAINFULLY EMPLOYED > FINALLY!!), though Madison's health is worrying DH and I a great deal. > > Not sure what to say other than that she is absolutly and completely > wiped out. Went back to school Monday morning, VERY tired but > apparently managed to make it through the morning, my mom picked her up > at 1, they had ice cream and came to meet me at the Dentist with Chance > and Abby, and soon thereafter Madison had what I think was a blood sugar > > episode with uncontrollable crying, totally limp, looked bad, etc etc. > Got some other food in her and her overall demeanor improved but she was > > obviously totally wiped out. She doesn't go to sleep really, just is > barely moving. Literally could not get her to open her eyes Tuesday > morning when we got her up for school and it looked like she had just > broken a fever, so we kept her home. She slept till 11, got up but went > > directly to the couch where she laid till about 5, when she in the > middle of cartoons no less asked if she could go to bed she was so > tired. She did though couldn't fall asleep and was back on the couch by > > about 6. Had dinner which she barely touched and was in bed by 8 and > was asleep by 9. Slept till 10 this morning and has again done nothing > but lay around all morning, though is playing a little while laying > down. Additionally, in that my main puter is on the blink I am working > on the one in the room where Madison sleeps and have listened to her > moan and cry out in her sleep almost the entire night for three nights > now. She never fully wakes up and I cannot determine what is hurting > her, but something appears to be. I am sure this disturbed sleep is not > > helping with the daytime sleepies. > > She feels like she might have a low grade fever off and on, had a BM > last night that was normal, no increase in urinary frequency, no > discharge from her ears, so I really don't have a clue what to think. > She rested a TON while on vacation from school and so I cannot fathom > why she is so incredibly wiped out. This has been progressively getting > > worse since school started and has definatly hit an all time low at the > moment. > > She's on 300mgs Neurontin at night to hopefully control what Dr. Cohen > feels is neuropathy pain that we know from her sleep study was awakening > > her a great deal every night, and it seemed to be doing the trick until > the last week or so. The Zantac appears to be controlling her reflux. > > I just need someone to give me some ideas. Do I just keep watching > her?? Told her yesterday that if she tells us she is too tired to go to > > school we will not make her go, though if this happens alot we HAVE to > consider her staying home for school. I can do this with Mad because I > know she really wants to be at school so will not abuse it.....also want > > her to feel like she CAN tell me when she is just too wiped out, > something that has traditionally been hard for her. Actually worst case > > scenario I see is her NOT telling me she feels bad for fear she won't be > > able to go to schoo rather than the other way around. With that said, > she told me this morning she is not sure she is gonna be able to make it > > to school tomorrow, which to me means she is REALLY not doing well right > > now. > > Its all just so freaking non descript, but there is SOMETHING going on > with this child. She has less energy right now than she did BEFORE > starting the supplements which means she's moving LESS THAN 10% of the > time (and its really probably closer to 1% of the time). Just not sure > where to > head or even what to look for at the moment and need any ideas you all > might > have for me PLEASE!!!!! > > BIG hugs, > Kass.....who is STILL staying excited and trying to not let this bug me > too much....LOL. > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Kass, Any possiblility Madison's blood pressure may be low? My son had that problem when they took him off his florinef, when they put him back on it, it made a world of difference. Good luck, hope Madison gets better. Barbara > >Reply-To: Mito >To: Mito list <Mito > >Subject: Madison >Date: Wed, 08 Jan 2003 11:35:43 +0000 > >Hi guys :-) > >Still sitting her beyond excited about DH's new job (for those that I >haven't had a chance to share the news with, DH IS GAINFULLY EMPLOYED >FINALLY!!), though Madison's health is worrying DH and I a great deal. > >Not sure what to say other than that she is absolutly and completely >wiped out. Went back to school Monday morning, VERY tired but >apparently managed to make it through the morning, my mom picked her up >at 1, they had ice cream and came to meet me at the Dentist with Chance >and Abby, and soon thereafter Madison had what I think was a blood sugar > >episode with uncontrollable crying, totally limp, looked bad, etc etc. >Got some other food in her and her overall demeanor improved but she was > >obviously totally wiped out. She doesn't go to sleep really, just is >barely moving. Literally could not get her to open her eyes Tuesday >morning when we got her up for school and it looked like she had just >broken a fever, so we kept her home. She slept till 11, got up but went > >directly to the couch where she laid till about 5, when she in the >middle of cartoons no less asked if she could go to bed she was so >tired. She did though couldn't fall asleep and was back on the couch by > >about 6. Had dinner which she barely touched and was in bed by 8 and >was asleep by 9. Slept till 10 this morning and has again done nothing >but lay around all morning, though is playing a little while laying >down. Additionally, in that my main puter is on the blink I am working >on the one in the room where Madison sleeps and have listened to her >moan and cry out in her sleep almost the entire night for three nights >now. She never fully wakes up and I cannot determine what is hurting >her, but something appears to be. I am sure this disturbed sleep is not > >helping with the daytime sleepies. > >She feels like she might have a low grade fever off and on, had a BM >last night that was normal, no increase in urinary frequency, no >discharge from her ears, so I really don't have a clue what to think. >She rested a TON while on vacation from school and so I cannot fathom >why she is so incredibly wiped out. This has been progressively getting > >worse since school started and has definatly hit an all time low at the >moment. > >She's on 300mgs Neurontin at night to hopefully control what Dr. Cohen >feels is neuropathy pain that we know from her sleep study was awakening > >her a great deal every night, and it seemed to be doing the trick until >the last week or so. The Zantac appears to be controlling her reflux. > >I just need someone to give me some ideas. Do I just keep watching >her?? Told her yesterday that if she tells us she is too tired to go to > >school we will not make her go, though if this happens alot we HAVE to >consider her staying home for school. I can do this with Mad because I >know she really wants to be at school so will not abuse it.....also want > >her to feel like she CAN tell me when she is just too wiped out, >something that has traditionally been hard for her. Actually worst case > >scenario I see is her NOT telling me she feels bad for fear she won't be > >able to go to schoo rather than the other way around. With that said, >she told me this morning she is not sure she is gonna be able to make it > >to school tomorrow, which to me means she is REALLY not doing well right > >now. > >Its all just so freaking non descript, but there is SOMETHING going on >with this child. She has less energy right now than she did BEFORE >starting the supplements which means she's moving LESS THAN 10% of the >time (and its really probably closer to 1% of the time). Just not sure >where to >head or even what to look for at the moment and need any ideas you all >might >have for me PLEASE!!!!! > >BIG hugs, >Kass.....who is STILL staying excited and trying to not let this bug me >too much....LOL. > > > _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
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