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My 2 year old diagnosed with Neprotic Syndrome

Posted , 4 users are following.

Guest
Guest

Can Anyone help me or experienced similar ? 

I’m in hospital have been for 6 days with my son, his body was full of fluid he had to have protein infusion, now 6 days later, protein and blood in urine still at hightest from his urine, after 6days being on steroids ? His fluid and weight has come down but weight has gone back up,  now the original signs are  starting to show like when we started? Has anyone any experience with this condition on here ? We’re still in hospital taking more bloods daily 

0 likes, 7 replies

7 Replies

  • eric31962
    eric31962 Guest

    Posted

    Really sorry to read this, you must be under one hell of a stressful experience. 

    I've had this condition my whole life and I have survived. Please follow the advice of the Nephrologists or whoever is handling  this case and don't be sold herbs or crank treatments. He will get better and your life will return to normal. Nobody knows what causes this condition but most people lead 'normal' useful lives. Plan for the future, just have ordinary simple meals with low or no salt, Good luck and God bless you all. E x   

    • Guest
      Guest eric31962

      Posted

      THAnk you Eric, thank you for your reply, it’s so worrying the unknown. I am trying to be positive just the unknown, never heard of this befor? Did you have many relapses with this ? The specialist is based at another hospital, so everything gets reported there and a plan sent back, just worries me why still such protien loss ? 
    • eric31962
      eric31962 Guest

      Posted

      Dear Loulou2480,

                                   I've read everything I can in UK and USA. I've been diagnosed for the past four years almost. I've had one relapse, my own stupid fault,I ate a 38 oz steak battered with salt, it was a surprise gift and didn't like to say; 'no thank you'! Won't happen again.

      The protein loss probably relates to the internal structure of the kidneys.(it will get better(Heal) given time) I'm not a doctor or researcher so please don't believe anything I write. 

                                                                Regards, and good luck all, E 

  • sue80045
    sue80045 Guest

    Posted

    My 16 year old has had Nephrotic Syndrome for 2 years now. He is frequently relapsing although the prednisone does work to put him in remission. We have finally come to terms with living with this and the ups & downs. My son leads a completely normal life at school, has a Saturday job & does sports & fitness. Very important to have a healthy diet low in salt especially as immune system will be lowered by the medications needed. Be strong & trust your doctors to find the best treatment for you son. 

    • Guest
      Guest sue80045

      Posted

      Thank you for your reply,  so glad to hear your son leading a normal life, they are putting a management plan in place to take home when we do, including dietry plan, they are being really supportive 
  • Zielenica
    Zielenica Guest

    Posted

    Hi there,

    While Eric has said the most important thing - listen to the doctors and do not try to help your child with anything that wasn't prescribed by the doctors in the first place and that your son will be ok; I wanted to add my own 3 cents.

    All the doctors I've met while struggling with Nephrotic Syndrome agreed to one thing: people do not die from kidney diseases anymore. Your child not responding to the steroids in first 6 days, in my opinion, is normal. Everyone is unique in medicine and you will never know how long it will take for your son to respond to the medicine. Sometimes it happens that steroids do not work. This is also frequent and nothing to worry about. Your doctors will simply try out different medicine until they hit jackpot. Relapses are different for everyone, however, from what I've been told, NS is primarily children's disease and in most cases can be treated AND cured.

    Stay positive, abide by doctors orders, and good luck!

    • Guest
      Guest Zielenica

      Posted

      Thank you for your advice, totally will always listen everything doctors are saying, it’s just a relief to hear from others may have experienced this first hand, thank you xx 
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