Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Hi Everyone! Before I begin Happy Holidays, and Many thanks to those of you who assisted in the MK fundraiser for the UMDF earlier this month. Now, a question concerning diarrhea and high ck levels. Abigail has been experiencing lose stools for roughly a week +. She has not had a fever, actually the opposite. Her temp has been running around 97.0 Her doctor has asked me to collect stool samples, which I have been working on today. The really watery ones disappear too quickly, but there are a few that have some consistency, which I can get a specimen from. The thing is, her skin is becoming very dry, as are her lips. She however can still cry with tears, and her mouth is reasonably moist. Abigail has elevated Ck levels, and I am beginning to worry. She is having 3 wet diapers a day…but I am wondering if that is enough in her case. She is reasonably strong right now, though her speech is suffering and her balance is not at its best. Should she have an IV? She had about 16 ounces of clear fluids, and about 4 of milk. I know I shouldn't give her milk, but she was begging and not eating. I gave in of course. Calories are vital too. I am putting a call into her doctor and hope to hear from them this evening though I imagine it will be tomorrow. All thoughts and experiences are welcome. Thx, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Hi Everyone! Before I begin Happy Holidays, and Many thanks to those of you who assisted in the MK fundraiser for the UMDF earlier this month. Now, a question concerning diarrhea and high ck levels. Abigail has been experiencing lose stools for roughly a week +. She has not had a fever, actually the opposite. Her temp has been running around 97.0 Her doctor has asked me to collect stool samples, which I have been working on today. The really watery ones disappear too quickly, but there are a few that have some consistency, which I can get a specimen from. The thing is, her skin is becoming very dry, as are her lips. She however can still cry with tears, and her mouth is reasonably moist. Abigail has elevated Ck levels, and I am beginning to worry. She is having 3 wet diapers a day…but I am wondering if that is enough in her case. She is reasonably strong right now, though her speech is suffering and her balance is not at its best. Should she have an IV? She had about 16 ounces of clear fluids, and about 4 of milk. I know I shouldn't give her milk, but she was begging and not eating. I gave in of course. Calories are vital too. I am putting a call into her doctor and hope to hear from them this evening though I imagine it will be tomorrow. All thoughts and experiences are welcome. Thx, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 How old is Abigail? That relates to how much fluid she needs per day. Three wet daipers though doesn't seem like enough. Let us know, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 How old is Abigail? That relates to how much fluid she needs per day. Three wet daipers though doesn't seem like enough. Let us know, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Alot of these kiddos have different protocals to go for IV and when to stay home. With Grace we go as soon as we realize that a diarreah or vomiting episode will last more than a few hours. Our goal is to try to get her to the hospital, before any signs of dehydration show up. Typically even when we get there early enough she will still dehydrate and stay that way until the IV has been in for 12-24 hours. Here is a little tip on getting good samples from a kiddo with diarreah....line the inside of the diaper with saran wrap. You really have to watch it (for obvious reasons) but you can just remove the diaper carefully after and lift the saran wrap out. This method is a little gross but it does work. Before Grace was diagnosed she was having 10-12 wattery BM's a day, so we unfortunatly did this alot. Best wishes Do you know all the things you can do with a Hotmail account? Click here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Alot of these kiddos have different protocals to go for IV and when to stay home. With Grace we go as soon as we realize that a diarreah or vomiting episode will last more than a few hours. Our goal is to try to get her to the hospital, before any signs of dehydration show up. Typically even when we get there early enough she will still dehydrate and stay that way until the IV has been in for 12-24 hours. Here is a little tip on getting good samples from a kiddo with diarreah....line the inside of the diaper with saran wrap. You really have to watch it (for obvious reasons) but you can just remove the diaper carefully after and lift the saran wrap out. This method is a little gross but it does work. Before Grace was diagnosed she was having 10-12 wattery BM's a day, so we unfortunatly did this alot. Best wishes Do you know all the things you can do with a Hotmail account? Click here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Three isn't enough in my opinion. Usually they recommend seeing at least 5-6 wet diapers in a 24 hour period minimum. Have you tried weighing the diapers to see how much volume they have in them? It may help the doctors and you to know if IV fluid is needed to know the amount. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) When to go for an IV? Hi Everyone! Before I begin Happy Holidays, and Many thanks to those of you who assisted in the MK fundraiser for the UMDF earlier this month. Now, a question concerning diarrhea and high ck levels. Abigail has been experiencing lose stools for roughly a week +. She has not had a fever, actually the opposite. Her temp has been running around 97.0 Her doctor has asked me to collect stool samples, which I have been working on today. The really watery ones disappear too quickly, but there are a few that have some consistency, which I can get a specimen from. The thing is, her skin is becoming very dry, as are her lips. She however can still cry with tears, and her mouth is reasonably moist. Abigail has elevated Ck levels, and I am beginning to worry. She is having 3 wet diapers a day.but I am wondering if that is enough in her case. She is reasonably strong right now, though her speech is suffering and her balance is not at its best. Should she have an IV? She had about 16 ounces of clear fluids, and about 4 of milk. I know I shouldn't give her milk, but she was begging and not eating. I gave in of course. Calories are vital too. I am putting a call into her doctor and hope to hear from them this evening though I imagine it will be tomorrow. All thoughts and experiences are welcome. Thx, Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Three isn't enough in my opinion. Usually they recommend seeing at least 5-6 wet diapers in a 24 hour period minimum. Have you tried weighing the diapers to see how much volume they have in them? It may help the doctors and you to know if IV fluid is needed to know the amount. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) When to go for an IV? Hi Everyone! Before I begin Happy Holidays, and Many thanks to those of you who assisted in the MK fundraiser for the UMDF earlier this month. Now, a question concerning diarrhea and high ck levels. Abigail has been experiencing lose stools for roughly a week +. She has not had a fever, actually the opposite. Her temp has been running around 97.0 Her doctor has asked me to collect stool samples, which I have been working on today. The really watery ones disappear too quickly, but there are a few that have some consistency, which I can get a specimen from. The thing is, her skin is becoming very dry, as are her lips. She however can still cry with tears, and her mouth is reasonably moist. Abigail has elevated Ck levels, and I am beginning to worry. She is having 3 wet diapers a day.but I am wondering if that is enough in her case. She is reasonably strong right now, though her speech is suffering and her balance is not at its best. Should she have an IV? She had about 16 ounces of clear fluids, and about 4 of milk. I know I shouldn't give her milk, but she was begging and not eating. I gave in of course. Calories are vital too. I am putting a call into her doctor and hope to hear from them this evening though I imagine it will be tomorrow. All thoughts and experiences are welcome. Thx, Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 If you are going to collect stool samples, you should get a hat from your doc. You can't get an accurate one from a toilet. If your child is in diapers, you can line them with Saran wrap so that they don't soak in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 If you are going to collect stool samples, you should get a hat from your doc. You can't get an accurate one from a toilet. If your child is in diapers, you can line them with Saran wrap so that they don't soak in. Quote Link to comment Share on other sites More sharing options...
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