Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

3 Bumps

My Son has Nephrotic Syndrome......

My 6 year Old has Nephrotic Sydrome Its basically he Needs New Kidneys. Hes Been going to childrens Memeorial For about 3 years now. but hes getting close to getting Dailysis. & I met the Center and people there. I Don't like it My mother Don't like it. But there is No other Pediatric Dailysis Center that I Can Find. I Don't Know what to Do Or Who to go to with a Second opion I Cant even Find a Group ANYWHERE to talk to Other moms...... Just Lost :(

Answer Question
 
miszcrushal

Asked by miszcrushal at 9:44 PM on Jul. 22, 2013 in Kids' Health

Level 2 (5 Credits)
Answers (16)
  • hugsI'm so sorry. I have a friend that needed to go on dialysis. Things weren't looking good for her and dr gave her 6 months to live. Then she got the best call of her life and soon after got a new kidney.


    Have you tried looking up Children's Hospitals or St. Jude's to see if they would have information.


    Here's a bump and prayers for you and your son.

    tempsingl3mom

    Answer by tempsingl3mom at 9:48 PM on Jul. 22, 2013

  • I agree with this ^^ Try calling St. Jude's. From what I understand they have a ton of information for parents of sick children, to include support groups
    Mrs_Prissy

    Answer by Mrs_Prissy at 9:49 PM on Jul. 22, 2013

  • Thank u ! I Did sum research into St Judes & its More of a cancer Hospital ....its also no located By me at all
    miszcrushal

    Comment by miszcrushal (original poster) at 9:49 PM on Jul. 22, 2013

  • I Cant even Find a Group ANYWHERE to talk to Other moms


    did you try google?

    feralxat

    Answer by feralxat at 9:50 PM on Jul. 22, 2013

  • Yes and it Takes Me to a Website for Adults with Nephrotic Syndrome......And there A Sections for Parents But I tried it before and no one can relate Or theres barley any One On ....they also are all from NYC and Boston
    miszcrushal

    Comment by miszcrushal (original poster) at 9:52 PM on Jul. 22, 2013

  • Just because it is a cancer hospital doesn't mean they won't be able to point you in the right direction.

    If someone asks me a question at work and it has nothing to do with what I do in my department, I can still tell them who can help them.

    Worth a shot.
    tempsingl3mom

    Answer by tempsingl3mom at 9:55 PM on Jul. 22, 2013

  • You don't have to GO to St. Jude's. You can just call them to get the information about hospitals, doctors and support groups that are in your area
    Mrs_Prissy

    Answer by Mrs_Prissy at 9:56 PM on Jul. 22, 2013

  •  


    would any of these sites offer assistance?
    Your child cannot be the only child in your area suffering from the condition. Please talk to the Patient Advocate and or Social Services at the hospital your child is being treated at.


    Or- you can tell us city and state and we will google for you
    we like searching out info :)

    feralxat

    Answer by feralxat at 9:59 PM on Jul. 22, 2013

  • You might also ask at your hospital for supportgroups of sick children, even if they don't have nephrotic syndrome, because some of the issues will be similar. Here's a bump, in case someone else has more ideas.
    Ballad

    Answer by Ballad at 10:19 PM on Jul. 22, 2013

  • I have tried to ask My case worker at Childrens Memorial Hospital For help and he Wont. Idk what else to Do I tried to ge thelp with babysitting I have to younger children and I told him my Father Needed help taking care of the younger kids while I take care of the older one but he wouldn't listen then a few weeks later my Father passed then MAGICALLY He found day care. I have even asked him To help me get tickets or sumthing so I could do things with my Kids before he got to sick AGAIN nothing HE Useless! And hes the Only one for the Kidney Department

    PS I Live in Aurora IL
    miszcrushal

    Comment by miszcrushal (original poster) at 10:27 PM on Jul. 22, 2013

Join CafeMom now to contribute your answer and become part of our community. It's free and takes just a minute.
close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN