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childhood nephrotic syndrome

Posted , 19 users are following.

Becky-mum-of-Lauren
Becky-mum-of-Lauren

Hi, I have a 7 year old with this syndrome and wondered if anyone has a child of similar age that they would be interested in talking to my daughter?? I feel that not many people have heard of this syndrome and although it is upsetting for us parents, it is just as much if not more for the children as they feel like they are the 'only one' with this. Us adults have the ability to talk online but children dont have that.

We live in Twickenham and i was wondering if anyone would be interested in their child and my daughter maybe writing or meeting??

1 like, 37 replies

37 Replies

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  • Minelle
    Minelle

    Posted

    hi... emily. thank u for sharing your experience with us. as a mum i'm very sad to hear about this decease and my daughter also having this problem from 3yrs old. now she is 4 yrs for the last one year she had many relapses and she had to take large dos of steroid. if you don't mind i like to know how old are you now? and how you did the natural treatment and from where you did. even i'm searching some home remedies to prevent from relapses. kindly help me emily as her mother i'm in depression. i want her to recover soon and i do my best to look after my daughter. I have twins a girl and a boy. because of my daughter's decease my son also suffering a lot. some time i couldn't treat him well as i have to give the most time for my daughter. emily i hope u will understand my feelings. god bless u

    cry

    • sudrshika49162
      sudrshika49162 Minelle

      Posted

      hi minelle. i just found this page . my son also diagnosed with this ayndrom when he was 2.5 yrs old and now he is 6yrs old. i am also looking for home remedies for this and have you found any of remedies . how is ur child now. my son was having different medication all thease yrs and it is killing me when he is having this. he got longerst 1 yr remission witch Tacro but started again and looking for new meds for this. i am do depressed and cant even sleep. pls tell me if u hav found anything new. so i can try on . Thank you

  • aishlingdoyle
    aishlingdoyle

    Posted

    Hi Becky I live in St. Margarets if you ever want someone to talk to your daughter. Reading it all is look reading exactly what I went through as a child. I had it twice as a child and am recently showing signs of it again (will have results on tuesday). Thankfully after all this time I know a lot about it and alternatives that can help. Would be happy to chat anytime!
  • LollyHS
    LollyHS Becky-mum-of-Lauren

    Posted

    Hi Becky,

    I've only just seen your post after searching for more inspiration/hope of new treatment!  I have a 5 year old son with Nephrotic Syndrome who was diagnosed three years ago. He hasn't asked many questions as I think he just accepts what goes on as he was so young when he was diagnosed.

    We live on the South Coast so not too far from you. I have also recently spoken to a family with a son in London who are still trying to come to terms with a recent diagnosis. If you're still looking for people to talk to who 'get it' please feel free to drop me a line. I hope all is well atm,

     

  • MalgorzataL
    MalgorzataL Becky-mum-of-Lauren

    Posted

    Hi Becky

    My name is Maggie. My daughter Olivia is 6.5 yrs old. She has just been diagnosed with nephrotic syndorme in June. We live in NY but maybe once in a while the girls could skype.

    Best 

    Maggie

  • irshad1968
    irshad1968 Becky-mum-of-Lauren

    Posted

    Hi Everybody

    I have two children suffering from Nephrotic Syndrome. 12 and 5 year old.

    Elder one relapsed after FIVE years in Sept 2013 ,and soon after  younger one was diagonised with NS for the first time.

    Tha has made me ponder whether it has something to do with eating something or environment ?

    Enough research hasnt been done on the reasons or causes.

    It's frustrating and a feeling of helplessness.

    Has anyone tried Natural Remedies or Homeopathy ?

    ​Pls share views.

  • sianfeff
    sianfeff Becky-mum-of-Lauren

    Posted

    Hi I just joined the group I have a 4 year old daughter with nephrotic syndrome I have been looking for a group since she was diagnosed. I'm from South Wales and as far as I know ther is a very small amount of children with the same  condition. I'm a nervous wreck with what happens or doesn't  happen to LILLIE she just takes it all in her stride she is so brave she takes all the needles and mess in her stride I'm in floods of tears and she is still smileing. Am I the only wreck of a mum or do u all feel the same??? X

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