Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hi and welcome to you too! Just as I wrote to , my heart always feels so heavy when a child is diagnosed. I am just so sorry you have had to watch your little girl endure chemo and steroids. I know that is so hard. How is she responding to her treatments thus far? Have they been able to get her creatinine down? I pray she will positively respond to the treatments. Sometimes with children IgAN can go into remission, and I hope that happens for all of you with children who have been diagnosed. Welcome again, In a message dated 11/10/2004 8:52:29 AM Pacific Standard Time, tnewman@... writes: > Hi. This is my first time posting on the message boards. My daughter was > eight when she was diagnosed after a biopsy. It is very scarey when it's > your child and you feel so helpless. She had 3+ protein in her urine. > Creatinine was 1.9 I believe. We have been on oral prednisone since March > of 2004. We're down to 12 ml every other day. We've been on two rounds of > cyclophosphamide(cytoxin). We've had weight gain due to the protein and > weight loss due to major dieruetics. We take four fish oil gell caps a day > along with vitamine E, multi vitamins and Enalapril 10 mg. It has been a > long road. I recommend getting great nephrologists who will listen, > educate, and answer questions. We drive three hours one way to doctors. > They're great! I can call at 10:00 at night and within five minutes I'm > talking to one of them. It's very scarey to read about, but it helps to > become educated about what to look for and what you're dealing with. Good > luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Hi , yes she is responding very well. It has been a hard road. Her creatinine is .7 which is really great. Depending on what time of day we dip her urin, she goes from having trace to no protein in her urine. She still has a lot of blood but unlike when this all started it isn't visible to the naked eye. When she was first diagnosed, when she went to the bathroom, it was completely coke colored or bright red. Very scarey. I have so many things to be thankful for. Thanks for the words of encouragement Re: 8year old diagnosed Hi and welcome to you too! Just as I wrote to , my heart always feels so heavy when a child is diagnosed. I am just so sorry you have had to watch your little girl endure chemo and steroids. I know that is so hard. How is she responding to her treatments thus far? Have they been able to get her creatinine down? I pray she will positively respond to the treatments. Sometimes with children IgAN can go into remission, and I hope that happens for all of you with children who have been diagnosed. Welcome again, In a message dated 11/10/2004 8:52:29 AM Pacific Standard Time, tnewman@... writes: > Hi. This is my first time posting on the message boards. My daughter was > eight when she was diagnosed after a biopsy. It is very scarey when it's > your child and you feel so helpless. She had 3+ protein in her urine. > Creatinine was 1.9 I believe. We have been on oral prednisone since March > of 2004. We're down to 12 ml every other day. We've been on two rounds of > cyclophosphamide(cytoxin). We've had weight gain due to the protein and > weight loss due to major dieruetics. We take four fish oil gell caps a day > along with vitamine E, multi vitamins and Enalapril 10 mg. It has been a > long road. I recommend getting great nephrologists who will listen, > educate, and answer questions. We drive three hours one way to doctors. > They're great! I can call at 10:00 at night and within five minutes I'm > talking to one of them. It's very scarey to read about, but it helps to > become educated about what to look for and what you're dealing with. Good > luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 I am so glad she is doing so well and responding to treatment. That makes me feel much better about her. You definitely have lots to be thankful for :-) In a message dated 11/11/2004 5:09:58 AM Pacific Standard Time, tnewman@... writes: > Hi , yes she is responding very well. It has been a hard road. Her > creatinine is .7 which is really great. Depending on what time of day we > dip her urin, she goes from having trace to no protein in her urine. She > still has a lot of blood but unlike when this all started it isn't visible > to the naked eye. When she was first diagnosed, when she went to the > bathroom, it was completely coke colored or bright red. Very scarey. I > have so many things to be thankful for. Thanks for the words of > encouragement > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Tara I also want to add my welcome to the group, though I'm sorry you found a need for us. It sounds like you have one strong little girl there. It's great that the treatments have been helping her and I hope she is able to live a long happy life despite having this disease. Welcome again, I'm glad you found us. Amy G. Re: 8year old diagnosed > > > Hi and welcome to you too! Just as I wrote to , my heart always feels > so > heavy when a child is diagnosed. I am just so sorry you have had to watch > your little girl endure chemo and steroids. I know that is so hard. How is > she > responding to her treatments thus far? Have they been able to get her > creatinine down? > > I pray she will positively respond to the treatments. Sometimes with > children IgAN can go into remission, and I hope that happens for all of you > with > children who have been diagnosed. > > Welcome again, > > > In a message dated 11/10/2004 8:52:29 AM Pacific Standard Time, > tnewman@... writes: > > > Hi. This is my first time posting on the message boards. My daughter was > > eight when she was diagnosed after a biopsy. It is very scarey when it's > > your child and you feel so helpless. She had 3+ protein in her urine. > > Creatinine was 1.9 I believe. We have been on oral prednisone since March > > of 2004. We're down to 12 ml every other day. We've been on two rounds > of > > cyclophosphamide(cytoxin). We've had weight gain due to the protein and > > weight loss due to major dieruetics. We take four fish oil gell caps a > day > > along with vitamine E, multi vitamins and Enalapril 10 mg. It has been a > > long road. I recommend getting great nephrologists who will listen, > > educate, and answer questions. We drive three hours one way to doctors. > > They're great! I can call at 10:00 at night and within five minutes I'm > > talking to one of them. It's very scarey to read about, but it helps to > > become educated about what to look for and what you're dealing with. Good > > luck! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Thanks Amy. It helps to know that other people out there have experienced some of the same things, Thanks for the words of encouragement. Tara Re: 8year old diagnosed Tara I also want to add my welcome to the group, though I'm sorry you found a need for us. It sounds like you have one strong little girl there. It's great that the treatments have been helping her and I hope she is able to live a long happy life despite having this disease. Welcome again, I'm glad you found us. Amy G. Re: 8year old diagnosed > > > Hi and welcome to you too! Just as I wrote to , my heart always feels > so > heavy when a child is diagnosed. I am just so sorry you have had to watch > your little girl endure chemo and steroids. I know that is so hard. How is > she > responding to her treatments thus far? Have they been able to get her > creatinine down? > > I pray she will positively respond to the treatments. Sometimes with > children IgAN can go into remission, and I hope that happens for all of you > with > children who have been diagnosed. > > Welcome again, > > > In a message dated 11/10/2004 8:52:29 AM Pacific Standard Time, > tnewman@... writes: > > > Hi. This is my first time posting on the message boards. My daughter was > > eight when she was diagnosed after a biopsy. It is very scarey when it's > > your child and you feel so helpless. She had 3+ protein in her urine. > > Creatinine was 1.9 I believe. We have been on oral prednisone since March > > of 2004. We're down to 12 ml every other day. We've been on two rounds > of > > cyclophosphamide(cytoxin). We've had weight gain due to the protein and > > weight loss due to major dieruetics. We take four fish oil gell caps a > day > > along with vitamine E, multi vitamins and Enalapril 10 mg. It has been a > > long road. I recommend getting great nephrologists who will listen, > > educate, and answer questions. We drive three hours one way to doctors. > > They're great! I can call at 10:00 at night and within five minutes I'm > > talking to one of them. It's very scarey to read about, but it helps to > > become educated about what to look for and what you're dealing with. Good > > luck! > > > > Quote Link to comment Share on other sites More sharing options...
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