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my daughter Posted by shermill on April 1, 2009, 3:55 pm 64.12.116.201 Hi my name is Sherri and I have an 11 year old daughter who was diagnosed with Minimal Change Nephrotic Syndrome on December 22, 2008. She was 10 at the time. When we were told her diagnosis i had never heard of this disease. I had no idea what to expect. She was on Prednisolone and ended up in remission fairly quick. I thought that since she responded to the medication so quick that it would not ever come back. Well I was wrong. It just came back last week. She is on a high dosage of steroids again. It breaks my heart watching what this medicine does to her poor little body. She is embarressed by it and doesn't want any of her friends to know. She went into a pretty deep depression the first time around i just pray to god she doesn't get depressed again. Is there anything i can do for her to keep her from getting so depressed?  Post a Response

Re: my daughter Posted by tanya clegg on July 3, 2009, 6:36 pm, in reply to "my daughter" 90.212.232.250 hi there sherri my name is tanya my son josh he is nearly 11yrs old now has got nephrotic syndrome, i can understand what you are going through with your daughter taking steroids and the depression, josh was diagnosed with it when he was just 3 years old he has had a really bad time with it, he has been on lots off different drugs to help him he is now on a drug called cyclosporin he has been on this for 4yrs now as well has being on 80mlg off prednisolone everytime he comes off the pred he relapses within a week now they are looking at giving him something called (MMS) i hope you get on top off things for your daughter because like yourself i have never heard off this before and i found it really hard... the doctors told me josh will have weak bones through taking the steroids, I was not happy with that but then he told me if he dont take them he wouldnt be hear and thats what he told josh so josh now knows that if he had not taken all these steroids that he has been taking for the past 4 yrs he would not be hear today...tanya... --Previous Message-- : Hi my name is Sherri and I have an 11 year old : daughter who was diagnosed with Minimal : Change Nephrotic Syndrome on December 22, : 2008. She was 10 at the time. When we were : told her diagnosis i had never heard of this : disease. I had no idea what to expect. She : was on Prednisolone and ended up in : remission fairly quick. I thought that : since she responded to the medication so : quick that it would not ever come back. : Well I was wrong. It just came back last : week. She is on a high dosage of steroids : again. It breaks my heart watching what : this medicine does to her poor little body. : She is embarressed by it and doesn't want : any of her friends to know. She went into a : pretty deep depression the first time around : i just pray to god she doesn't get depressed : again. Is there anything i can do for her : to keep her from getting so depressed? :  Post a Response

Re: my daughter Posted by aquamarine on April 28, 2009, 5:11 am, in reply to "my daughter" 80.195.180.19 --Previous Message-- : Hi my name is Sherri and I have an 11 year old : daughter who was diagnosed with Minimal : Change Nephrotic Syndrome on December 22, : 2008. She was 10 at the time. When we were : told her diagnosis i had never heard of this : disease. I had no idea what to expect. She : was on Prednisolone and ended up in : remission fairly quick. I thought that : since she responded to the medication so : quick that it would not ever come back. : Well I was wrong. It just came back last : week. She is on a high dosage of steroids : again. It breaks my heart watching what : this medicine does to her poor little body. : She is embarressed by it and doesn't want : any of her friends to know. She went into a : pretty deep depression the first time around : i just pray to god she doesn't get depressed : again. Is there anything i can do for her : to keep her from getting so depressed? : Hi My daughter hannah will be nine shortly and has the disease for nearly four years and this year she has been so embarassed by it i think alot of it is age and school etc. I went into her school and had a word with her teacher who gave her class a talk on the disease and why hannah has so much time off school, mood swings due to steroids etc. Hannah has been luck and has some very good friends who help her. She also has two friends with the disease who we met whilst being in hospital (Evalina Childrens Hospital in London)who she has kept in contact with so she knows she is not on her own. Unfortunately this is quite a rare illness so not many people no about it but tell her to talk to her best friend and hopefully thye will be able to help her.  Post a Response

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