Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 Merry Christmas everyone! Well, the Dr. has changed our game-plan again. Now, they would like us to make the hour drive into Boston when is extremely fatigued. Not just when she is vomiting but when a virus has kicked her butt! I understand their thinking...I really do. Has any one done this or do you wait for a crisis? She is so tired she has trouble walking up the stairs without being winded. She had an ear ache and sore throat and is on anti-biotics. She seems so much better but she has little energy. The circles under her eyes are disturbing to look at and her palor makes me concerned. They say a 24 hour dose of fluids would turn her around. It's just so traumatic. She is almost ten and when her fight kicks in-she can be very difficult to place an IV. We usually fight her for atleast an hour just placing the IV. Even with drugs before hand she freaks...Do I want to do that to her? Should I let her go another week or two? Or do I get her the fluids so she has energy for Christmas vacation? Please-I need words of wisdom. This is a new game. I need the rules... Mom to Nikki (9) Mito/CVS/Gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 Merry Christmas everyone! Well, the Dr. has changed our game-plan again. Now, they would like us to make the hour drive into Boston when is extremely fatigued. Not just when she is vomiting but when a virus has kicked her butt! I understand their thinking...I really do. Has any one done this or do you wait for a crisis? She is so tired she has trouble walking up the stairs without being winded. She had an ear ache and sore throat and is on anti-biotics. She seems so much better but she has little energy. The circles under her eyes are disturbing to look at and her palor makes me concerned. They say a 24 hour dose of fluids would turn her around. It's just so traumatic. She is almost ten and when her fight kicks in-she can be very difficult to place an IV. We usually fight her for atleast an hour just placing the IV. Even with drugs before hand she freaks...Do I want to do that to her? Should I let her go another week or two? Or do I get her the fluids so she has energy for Christmas vacation? Please-I need words of wisdom. This is a new game. I need the rules... Mom to Nikki (9) Mito/CVS/Gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 I have in the past done this and it has turned out to be of benefit. If we have waited it has just prolonged the fatigue and symptoms for over a week or more. Each childs case is so different so we really can't say, but if your doctors are suggesting this then I would do it. Most people have to fight for treatment for their kids, but you are her mom and you need to do what you feel in your heart is best. Wish I could give you the right answers, but I don't think any of us on the list can ~ we can just help you and encourage you to go with what you feel. Best of luck and I hope she is feeling better soon! Kerry -----Original Message-----From: Gianino Sent: Saturday, December 25, 2004 6:23 PMTo: Mito Subject: IV's With Fatigue?Merry Christmas everyone! Well, the Dr. has changed our game-plan again. Now, they would like us to makethe hour drive into Boston when is extremely fatigued. Not just when she is vomiting but when a virushas kicked her butt! I understand their thinking...I really do. Has any one done this or do you wait for a crisis? She is so tired she has trouble walking up the stairs without being winded. She had an ear ache and sore throatand is on anti-biotics. She seems so much better but she has little energy. The circles under her eyes are disturbingto look at and her palor makes me concerned. They say a 24 hour dose of fluids would turn her around. It's justso traumatic. She is almost ten and when her fight kicks in-she can be very difficult to place an IV. We usuallyfight her for atleast an hour just placing the IV. Even with drugs before hand she freaks...Do I want to do thatto her? Should I let her go another week or two? Or do I get her the fluids so she has energy for Christmas vacation? Please-I need words of wisdom. This is a new game. I need the rules...Mom to Nikki (9) Mito/CVS/GerdPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 I have in the past done this and it has turned out to be of benefit. If we have waited it has just prolonged the fatigue and symptoms for over a week or more. Each childs case is so different so we really can't say, but if your doctors are suggesting this then I would do it. Most people have to fight for treatment for their kids, but you are her mom and you need to do what you feel in your heart is best. Wish I could give you the right answers, but I don't think any of us on the list can ~ we can just help you and encourage you to go with what you feel. Best of luck and I hope she is feeling better soon! Kerry -----Original Message-----From: Gianino Sent: Saturday, December 25, 2004 6:23 PMTo: Mito Subject: IV's With Fatigue?Merry Christmas everyone! Well, the Dr. has changed our game-plan again. Now, they would like us to makethe hour drive into Boston when is extremely fatigued. Not just when she is vomiting but when a virushas kicked her butt! I understand their thinking...I really do. Has any one done this or do you wait for a crisis? She is so tired she has trouble walking up the stairs without being winded. She had an ear ache and sore throatand is on anti-biotics. She seems so much better but she has little energy. The circles under her eyes are disturbingto look at and her palor makes me concerned. They say a 24 hour dose of fluids would turn her around. It's justso traumatic. She is almost ten and when her fight kicks in-she can be very difficult to place an IV. We usuallyfight her for atleast an hour just placing the IV. Even with drugs before hand she freaks...Do I want to do thatto her? Should I let her go another week or two? Or do I get her the fluids so she has energy for Christmas vacation? Please-I need words of wisdom. This is a new game. I need the rules...Mom to Nikki (9) Mito/CVS/GerdPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 My children can both be very ill and can turn around greatly with IV fluid. I say it is worth a try. I hope it works out! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 My children can both be very ill and can turn around greatly with IV fluid. I say it is worth a try. I hope it works out! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 We are to the point that we will probably need to use an IV for Evan next time he gets sick. He just has too many of the " Worrisome Signs " that are listed in " Management Stategy for Acute Illnesss in Patients with Mitochondrial Cytopathy " The signs are unexplained or excessive fever, alteration in usual cognitive level, confusion, excessive sleepiness, excessive crying, vomiting, loss of appetite, rapid breathing, and abdominal pain. Have a Merry Christmas , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 We are to the point that we will probably need to use an IV for Evan next time he gets sick. He just has too many of the " Worrisome Signs " that are listed in " Management Stategy for Acute Illnesss in Patients with Mitochondrial Cytopathy " The signs are unexplained or excessive fever, alteration in usual cognitive level, confusion, excessive sleepiness, excessive crying, vomiting, loss of appetite, rapid breathing, and abdominal pain. Have a Merry Christmas , Quote Link to comment Share on other sites More sharing options...
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