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New Swine Flu Shot
- By Deb3 · New reply 9:44 am
- Discussion in Adults with nephrotic syndrome · 16 replies
- I am confused if the new swine flu shot is a good idea for adults/children with NS or MCD. I have already read that they should not receive vaccations. Anyone been advised by their doctors or Neph. doctors ...
Prograf and diareah
- By worriedmomV · Posted 8:04 am
- Discussion in Children with nephrotic syndrome · 0 replies
- My son has NS, he is 8. He seems to get diareah often. If he gets a virus, like a cough. He gets diareah too. Not fevers, but right to his tummy and the diareah. It lasts for 2-3 days. This happens about ...
FSGS remission after oral galactose therapy...
- By maaxiim · New reply 4:11 am
- Discussion in Adults with FSGS · 32 replies
- Some cases of nephrotic syndrome in focal and segmental glomerulosclerosis (FSGS) are associated with a circulating factor, the FSGS permeability factor (FSPF). Galactose has a high affinity for FSPF ...
Tummy aches with Pred
- By alisan · New reply 3:00 am
- Discussion in Children with FSGS · 8 replies
- My 5 year old was just started on Prednisone 3 days ago and has been complaining of stomach pain and nausea. Mostly occurs 1st thing in the morning and after lunchtime. He's also taking enalapril and ...
NephCure Patient Education Seminar in LA on Saturday 11/7
- By psafaeian · New reply 1:29 am
- Journal · 1 reply
- Just a reminder! The NephCure Foundation will be hosting a Patient Education Seminar in Los Angeles this Saturday November 7th 2009! This is a great opportunity to learn more about nephrotic syndrome ...
Pregbancy with FSGS
- By louann1982 · New reply yesterday at 11:22 pm
- Discussion in Adults with FSGS · 5 replies
- Hi im 28 years old with FSGS, under the care of a specialised nephrologist. Hes advised against pregnancy until total remission is reached. Can anyone share with me their experiences or cases. Thanks ...
Please help!
- By QUINNRENEE · New reply yesterday at 9:55 pm
- Discussion in Children with nephrotic syndrome · 23 replies
- I am a mother of a nephrotic child, he is 6 years old.He has been hospital home bond for kindergarten which makes things very hard for the whole family. I just need to talk with another mother who is ...
Laughter is contagious
- By T-rae · Posted yesterday at 9:27 pm
- Journal · 0 replies
- The kids that I babysit for are great. I love them! I just want to say that even though I am so swollen I am about to pop I can not stop smiling because the one year old that I am watching has this unbelievable ...
Feeling blah
- By T-rae · New reply yesterday at 8:05 pm
- Journal · 1 reply
- I am feeling down. All day I have felt tears welling up, they have yet to spill out but damn I am so overly emotional at this point. I am so thankful that I like my job now and I don't mind being there ...
Galactose trial
- By stretch · New reply yesterday at 8:00 pm
- Discussion in Children with FSGS · 52 replies
- Hi all. I was wondering has anyone tried the Galactose trial for fsgs ans what was the outcome ...
Relapse
- By T-rae · New reply yesterday at 4:55 pm
- Journal · 5 replies
- Well here I go again. Wish the swelling would go away. I hate how it feels, hate how it looks, wish I didn't sound so vain. That's life I wish I could cry, but I will not let myself this time. I am just ...
Tapering off Prednisone
- By shawny816 · New reply yesterday at 3:47 pm
- Discussion in Children with nephrotic syndrome · 3 replies
- My son was on Prednisone 5ml=15mg twice a day for a month. Today we had our month check up and his doctor lowered it to 71/2ml roughly 20mg every other day. Does this seem like the norm? He has 0 protein ...
NephCure Patient Education Seminar in Miami 11/15
- By psafaeian · Posted yesterday at 2:23 pm
- Journal · 0 replies
- The NephCure Foundation will be hosting a Patient Education Seminar in Miami on Sunday November 15th 2009! This is a great opportunity to learn more about nephrotic syndrome and FSGS, get your questions ...
Scrotal swelling/pain on Prednisone
- By alisan · New reply yesterday at 2:10 pm
- Discussion in Children with FSGS · 2 replies
- Hi all, I know this may be a bit personal, but for the parents with little boys with FSGS, did any of them complain about scrotal pain? My 6 yr old has been on high dose Pred for almost a week and I have ...
Too new to know what is happening
- By stars200 · New reply yesterday at 11:54 am
- Journal · 5 replies
- Just diagnosed with FSGS. Really nervous and scared so far about what I have read. The Neph was supposed to call today after she went over the report and to discuss what we should do. She did not call ...
The Time before Dialysis/Transplant
- By smile213 · New reply yesterday at 10:17 am
- Discussion in Adults with FSGS · 16 replies
- I would like to ask about experiences with the period of time right before dialysis/transplant is necessary. How was it decided that it was time for this? Were there physical signs? How high was your ...
Breast Milk
- By speakerlav · New reply yesterday at 8:45 am
- Discussion in Children with nephrotic syndrome · 12 replies
- My daughter who is 3 1/2 years old was recently diagnosed with minimal change nephrotic syndrome. She just experienced her first relapse after being off the prednisone for 7 weeks. So, we are back on ...
Muscle spasams and cramp HELP!!!
- By Tyree · New reply yesterday at 8:36 am
- Discussion in Adults with FSGS · 30 replies
- Lately I have been having the worst muscle spasams and cramps. Sometimes they alternate from leg to leg every two hours. Its gets very bad to the point where I am screaming or crying for relief. I have ...
Change of Med Regimen
- By Beensoblessed · Posted November 5, 2009
- Discussion in Children with nephrotic syndrome · 0 replies
- My daughter was diagnosed Sept of 08. She's been on prednisone and celcept and has had 2 relapses despite slow removal from the steroids. She hasn't grown much & this is a concern to her dr. He wants ...
Swine Flu Vaccine-Will you/your child get vaccinated?
- By kcsmommy · New reply November 5, 2009
- Discussion in Children with nephrotic syndrome · 21 replies
- Just wondering what your thoughts are on getting the H1N1 (swine flu) vaccine? My 3 year old son is on 2 immunosuppressive drugs, Prograf and Prednisone. His Neph. wants him to get the vaccine as soon ...
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The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration. The NephSpace Support Community is sponsored by The NephCure Foundation in partnership with Inspire.