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!
Hi Valerie, I completely understand your concerns! As a child I had it twice and recently started relapsing but pulled myself out of it with lifestyle changes. I don't know if you've tried anything other than steroids but I think trying anything natural is really worthwhile. The immune system is generally low if he keeps getting it so he should really be eating a clove of raw garlic a day, vegetable juices as well as loads of raw fruit/veg. For the moment limit protein products and definitely avoid dairy as it will only lower his immune system further. If there are any intolerances at all to wheat etc cut it out. Supplements to help: reservatrol and oregano oil capsules. I'm not sure if this is what you're looking for but it worked for me only a few months ago.
Thank you so much for your advice. I will print it out and give it to my grandson. I really believe that "you are what you eat" to a large extent, so it is worth trying anything. Thanks again.
Hi Valerie, has he tried going gluten free? You don't have to be coeliac to benefit from this. Gluten is a huge protein that can work as an antigen depleting the immune system. Removing it allows the body to be better able to fight off any immune issues. It takes a while for the body to fully get it out of the system but if he tried it for a few months he could feel the benefit. It's not as hard as it sounds and Sainsbury do a good range of 'free from' products. Best wishes for his recovery.
Hi Eva
Thank you for that suggestion. It is certainly worth trying. I will suggest it to him and his Mum.
Valerie
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?
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.
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.
Hello Lily
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.