Lupus nephritis

Discussion in 'Family Life - Stories, Pictures & Updates' started by sourland, Oct 6, 2012.

  1. sourland

    sourland Broody Magician Premium Member

    May 3, 2009
    New Jersey
    My grand daughter was diagnosed with Lupus at around 4 years of age. She is now nearly 14. Her flare ups have been severe but relatively infrequent. Puberty appears to have increased the frequency. Standard medications have succeeded in inducing remission, and her life has been pretty 'normal'. We are presently in a bad space. On Monday of this week she ended up in ICU at University of Md Medical center. The presumptive diagnosis is Lupus nephritis. She is stabilized and a kidney biopsy for a positive diagnosis was taken on Friday. One small ray of hope is that they did not 'install' ports for dialysis because there was a slight increase in kidney function. We should have a final diagnosis on Monday. I know the long term prognosis and don't need to hear anymore of that. Can anyone give me any hope/help.

    She is Asian and adopted. I mention this fact only because of the fact that we know nothing of her family medical history. Friends at a local Chinese delicatessan have told me that the province from which Jenny comes seems to be endemic for people with 'arthritis'.

    I knew there was probably a time limitation on the period for which we would have this child, but I hoped for more.

    I am the fixer, the helper, the protector of this family and I am lost because I can do nothing for her. I have faith and believe in the power of prayer. I think we need a miracle.
  2. MamaRoo

    MamaRoo Chillin' With My Peeps

    Jul 5, 2011
    A ferry ride away, WA
    Some autoimmune diseases respond favorably to dietary changes. If you decide to try this, the first things to try eliminating are the big, not very digestible proteins: gluten (mostly wheat), soy, casein (milk), and corn. Being corn free helps my arthritis immensely. Other find positive changes with other foods. I'm more familiar with what helps people with inflammatory arthritis, but AIs tend to travel in packs, so it's not unreasonable to try eliminating a few foods and see if it helps.

    Sorry that Jenny and your family are going through this.
  3. mississippifarmboy

    mississippifarmboy collects slightly damaged strays

    Oh George my friend..... [​IMG]

    Nothing I can say and I don't have any advise.

    But you and your family will be in my thoughts and prayers.

    If there is anything at all we can do please let us know.
  4. EmtheFishLady

    EmtheFishLady We're all mad here

    Jan 13, 2011
    Glen, MS
    So sorry George. [​IMG]

    We'll be thinking of you, and praying for you.

    Like Terry said, if you need anything at all, even if it's just an ear, let us know.
  5. redhen

    redhen Kiss My Grits... Premium Member

    May 19, 2008
    Western MA
    Oh George..:( You and your family are in my thoughts and heart. So sorry.. :hugs. :fl
  6. sumi

    sumi Égalité Staff Member

    Jun 28, 2011
    Rep of Ireland
    George, I'm so sorry to hear you and your family are going through this [​IMG] I will keep you all in my thought and prayers.
  7. nova022

    nova022 Chillin' With My Peeps

    Aug 3, 2012
    i believe in miracles. Your grand daughter will be in my prays as will you and your entire family.
  8. sourland

    sourland Broody Magician Premium Member

    May 3, 2009
    New Jersey
    VERY positive update. I think that we were granted a mini miracle. Went to see Jenny today, and here is where we are. Kidney condition has gone from: Rapid kidney deterioration to decreased rate of deterioration to some signs of kidney function. The results of Friday's kidney biopsy indicate "Kidney damage of a degree that indicates probable complete recovery given a regimen of proper treatment and diet." Doctor talk for, "We think the kid will probably be OK this time." [​IMG]

    More work is going to be instituted in an attempt to determine 'triggers' which are causing the flare ups coupled with a Lupus/kidney diet to minimize problems - a heck of a lot more positive than when we were notified on Wed. Apparently when she was put in ICU on Mon. things were touch and go for about 12 hours. Her arms, legs, torso and face are still bloated with retained fluids, but they are being flushed from her body gradually. Jenny is amazing. With us there she started questioning her Dad about : How sick was I really. Am I going to make it? What are my long term chances? Pretty heady stuff for a kid - He answered her candidly and quite honestly - a truly good moment.

    Tonight I can sleep.
  9. HeatherLynn

    HeatherLynn Chillin' With My Peeps

    May 11, 2009
    Kentucky, Cecilia
    I will add her to my prayer list. I hope you all get more miracles for her.
  10. EmtheFishLady

    EmtheFishLady We're all mad here

    Jan 13, 2011
    Glen, MS
    Great news George! We will keep you in our thoughts and prayers.

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