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In an earlier message I mentioned my grandson of 18 having NS since he was a baby. We were told then that there was a good chance he would grow out of it. He never has and his last relapse was bad needing high Prednisalone dosage.
Is there any good news out there that we can hang on to? Is ther any chance that now he is an adult, he will not relapse and that the steroids has not caused sterility? We could really do with some good news right now!
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Thank you for that suggestion. It is certainly worth trying. I will suggest it to him and his Mum.
Hi Valerie, I'm Soham. Even I have NS since I was a kid. After a lot of trial and error, we have zeroed in on food colour as being one of the primary, if not only, trigger, other than the known cough and cold etc. Thought it might help, so dug up this old post.
Also how is your grandson now?
Hi Soham. Could you please tell more detail about your solution? Thank you very much. My brother also has NS for 4 years and he got steroid dependence. I am really worried about his health. Actually I don't think that medicines can cure the disease completely. So I am looking for natural remedies. I am also looking forward to hearing about Ms. Valerie's grandson.
You're right, steroid medication cannot cure NS, it's more of a stopgap measure until some kind of body stress (common cold, some other disease or exposure to allergens - food colour in my case. Even mental stress) triggers it again.
Currently I'm at a stage where a cough and cold triggered reoccurence (i say reoccurence, not relapse) can be checked with appropriate antibiotics and a 2 week long steroid (deflazacort) course. But the frequency of these 'reoccurences' is on the rise, which is why I am on this page in the 1st place.
Also, even though I'm over 18 I've been advised by my trusted doctor (a paediatric nephrologist) not to visit an adult nephrologist, as the treatment for adult NS is a different deal.
Ya..so many question pile up to me just like u..why can't this be cured.will my little one be okay?I can imagine the pain.
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