1. Community
  2. Genito-urinary/Kidney
  3. Kidney Problems

What hope is there that Nephrotic Syndrome will be cured?

Posted , 6 users are following.

valerie94214
valerie94214

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!

0 likes, 8 replies

8 Replies

  • aishlingdoyle
    aishlingdoyle valerie94214

    Posted

    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. 
    • valerie94214
      valerie94214 aishlingdoyle

      Posted

      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.
    • Eva88
      Eva88 valerie94214

      Posted

      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.
    • valerie94214
      valerie94214 Eva88

      Posted

      Hi Eva

      Thank  you for that suggestion. It is certainly worth trying. I will suggest it to him and his Mum. 

      Valerie

  • soham
    soham valerie94214

    Posted

    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. smile

    Also how is your grandson now?

    • lily2308
      lily2308 soham

      Posted

      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.

    • soham
      soham lily2308

      Posted

      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.

  • ran62985
    ran62985 valerie94214

    Posted

    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.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.