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| Hi my daughter also has nephrotic sydrome she has had on goin relapes since diagnosis in january 08, involving being in and out of hospital several times quite unwel and needing albuim infusions. She is constantly on a salt restricted diet and whilst in relapse her fluid intake is restricted to 1000ml per day. She is steriod dependent and once weaning of steriods starts she will relapse. As regards to antibotics these are i am told a precautionary measure to protect the the sufferer from coming down with peritionitis a stomach infection which sometimes can be fatal, so it doesn't itself cure nephrotic sydrome. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi - i wanted to know how you treated your self please help me i have a little girl who is 6 and has the syndrome. She got diagnosed in July 08 and was ok with Raw juices until we went to QLD over Xmas and got a cold. Can you explain what ace inhibitors are please? i am very down and dont want my daughter on steriods. Also what antibiotic made you better. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi im a 26 year old female who has had Nephrotic Sydrome since the age of 2. Aparently you can grow out of it but im my case not! I was on steriod treatment all throught out my childhood and teenage life so as you can imagine it was not very pleasant. After 6 years of no treatment i had a relaspe :( The symptoms were the usual of - Swelling in the eyelids and ankles! I found that i was swollen everywhere and then by the end of the day all the fluid had gone to the bottom halve of my body - hence the legs and ankles. - I didnt feel unwell as such but did feel sluggish ! Unfortunately the doctors do not know everything about Nephrotuc Syndrome and different people react to different treatments - mine was lots of steriods and fluid tablets (To help reduce the fluid in the body) If anyone wants to talk about it then this is a good way because i grew up not knowing anyone having this complaint and its nice to know that your not the only one out there. kelly x |
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| I'm 15 years old and have nephrotic syndrome as well. I was diagnosed a little over a month ago. I was wondering what type of symptoms did your son have when he relasped? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| anopther thing most doctors wont tell you is that what is known about this disease is still in the learning stages, and that they dont have all the answers yet, still trying new ideas, and the kidneys in general are one of the least understood parts of the body. so get as much info as you can. i was reading the wikipedia website it has al;ot of good stuff there. watch the diet the most and the ace inhibitors, but deffinitly ask about the antibiotic treatment. this i what i say was what made me better. all of it combined. some doctors wont tell you either to avoid any and all unnessisary pills. i found as well that cranberry juice would make my kidneys not burn so much, as it lowers the acid level. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i am an adult with nephrotic syndrome, i was diagnosed about 7 years ago, when i went the the doctor for a physical for my job, at first i seemed to just be geting worst. i was doing as the doctor said , the usual treatment in the states is, ace inhibitors, wich is a blood pressure med that helps by dialating blood vessles, so that the blood flow can return to normal. and avoiding acidy food and drink, no salt ect. however at the time i was not getting better only worst to where i was very bad off, my doctor told me there is a new line of thought that says nephritis is possible related to an infection deep in the tissues of the kidney, and that some people have shown great inprovement with a long term dose of antibiotics, so we tried it, it had some side effects , hard on the stomach, made me feel a bit tired as well but possibly that was the syndrom as well, anyway after 6 to 8 months feeling fine. for a couple years after little twinges in my kidneys now and then. but i now show no signs of the disease. now i still take my ace inhibitors to lessen the chance of reoccurance , but since i have been well. i do feel for anyone that has this it is said to be one of the most painfull problems you can have i know it was awful please ask your doctor about this treatment, i have found ussually australia is a bit behind in some of the treatments, ussually about 5 years or so after america tries it out first. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| http://en.wikipedia.org/wiki/Nephrotic_syndrome This gives a bit more info and explains it a bit better than I have !! |
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| Nephrotic Syndrome affects the kidneys. Basically the filters in the kidneys open up too much and leak protein into the body. This causes swelling , tiredness and feeling unwell. It is treated by steroids mainly but there are other medications that can be used if the child does not respond to steriods. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ummm can you please tell me what Nephrotic Syndrome is??? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My second son has just been diagnosed also with Nephrotic syndrome. This condition is not supposed to be genetic , I am extrememly keen to contact other families who have a child with this illness. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi , My son was diagnosed with Nephrotic syndrome at the age of 6. He has had 4 relapses since then although he is currently in remission. I am told that quite a few children are diagnosed with this although I have never met another child who has had it or even met someone who knows what it is. Just wondering if anyone can give me any more info on it or tell me of their experiences with it?? As he is in remission it is something that is always worrying me I keep waiting for him to relapse just wondering how other people cope with this?? Thanks |
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