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Discussions
Prograf and diareah
- By worriedmomV · Posted yesterday at 8:04 am
- 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 ...
Tapering off Prednisone
- By shawny816 · Posted November 6, 2009
- 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 ...
Scrotal swelling/pain on Prednisone
- By alisan · Posted November 6, 2009
- In Children with FSGS · 3 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 ...
Change of Med Regimen
- By Beensoblessed · Posted November 5, 2009
- 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 ...
Doing the Nephcure walk in tampa Fl. December 12th any one going?
- By QUINNRENEE · Posted November 3, 2009
- In Children with nephrotic syndrome · 2 replies
- Doing the nephcure walk in tampa Fl. looking for familys that are attending ...
Tummy aches with Pred
- By alisan · Posted November 3, 2009
- In Children with FSGS · 9 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 ...
Help
- By littleflowercure · Posted November 1, 2009
- In Adults with nephrotic syndrome · 1 reply
- My father is in ICU right now. He is stuck in a continous afib loop, Dialysis, edema, olcers, he is type A positive, it came on suddenly, He is on predisone, lasix, sorry my spelling stinks. I feel like ...
relapsing NS child and getting an H1N1 shot..do you or not?
- By worriedmomV · Posted November 1, 2009
- In Children with nephrotic syndrome · 12 replies
- Has anyone gotten the H1N1 vaccine for their neph child while the child is relapsing and on Prograf? Not that I can find one anyhow, but my son's Dr said get the injectable as soon as possible whether ...
does anyone notice a pattern?
- By dink2061 · Posted October 31, 2009
- In Adults with FSGS · 4 replies
- It has been a LONG time for me, 30 years roughly, but I was wondering if anyone notices a pattern to the swelling? First in the legs and ankles, then the hands and then......it seems it all goes to the ...
PLEASE can you HELP....?
- By AnsabIqbal · Posted October 31, 2009
- In Children with FSGS · 1 reply
- hi all ...i am 18.i had fsgs almost 1.5 years before ...THANKS GOD it is mostly recovered ...please can anyone tell me that is it fully recoverable and how many chances are there for it to reoccur ....and ...
Adjuvant free H191 Vaccination or not?
- By 4myangel · Posted October 31, 2009
- In Children with nephrotic syndrome · 1 reply
- Just wondering if anyone has info on pros/cons of the adjuvant free or adjuvant H1N1 vaccine. Our son has relapsed in October & am tapering his pred. Now on 40mg every other day. Have heard the adjuvant ...
pH levels?? can anyone help
- By ashleighs_mummy · Posted October 30, 2009
- In Children with FSGS · 1 reply
- Hi, I was wondering if anyone could help. My daughter has had FSGS since she was 13 months, shes now 5, no medication has worked so we are just keeping out fingers crossed her kidneys keep working for ...
NephCure Lunch and Learn in Los Angeles
- By CatherineL · Posted October 29, 2009
- In Children with FSGS · 0 replies
- We hope you will join us at the Hotel Angeleno for the NephCure Foundation's Lunch and Learn Patient Seminar on November 7. This seminar will be for Adults and Youth with NS and FSGS. 9:00 a.m. with light ...
NephCure Walks in L. A. and Orange County
- By CatherineL · Posted October 29, 2009
- In Fundraise for NephCure · 0 replies
- We hope you all will support our NephCure Walks in Los Angeles and Orange County. The Orange County Walk is November 14 with Los Angeles on the 15th. Volunteers and Walkers are still needed. Contact me ...
What if nothing works
- By birdlegs · Posted October 29, 2009
- In Adults with FSGS · 1 reply
- My last two treatments have not improved my spillage at all. My Dr believes that I have progessed to stage 3 CKD. I've just started Cellcept for the next two months. Just in case this doesn't work either ...
30 year remission and its back
- By dink2061 · Posted October 29, 2009
- In Adults with nephrotic syndrome · 10 replies
- Hi everyone. I was diagnosed with NS at 2 yrs old and continued with this crappy disease till I was 14 yrs old. That was 30 years ago and a few weeks ago, IT returned. I am reliving at 43 yrs old all ...
Is Sense of Taste Being Affected By Meds?
- By Andre33 · Posted October 28, 2009
- In Adults with FSGS · 6 replies
- Used to eat Jif peanut butter right from the Jar. Loved it. Now ALL peanuts and peanut butter has a "burnt" taste to me. So does some chocolate. (So much for the Reeses). Anyone else have this happen ...
What is the longest time between relapses??
- By luckymomof4 · Posted October 28, 2009
- In Children with nephrotic syndrome · 3 replies
- My son was diagnosed with NS at 2 years old (he is now 12). He relapsed multiple times over the course of about 5-6 years but responded very easily and quickly to steroids each time and did not require ...
High does prednisolone/ high protein levels FLU SHOT ands H1N1 SHOT
- By lovemykayla · Posted October 28, 2009
- In Children with nephrotic syndrome · 15 replies
- I have scheduled Makayla twice for a flu shot and each time she relapsed right before her appointment. Neph doc said NO to the shot during her relapse. Now she is telling me to go ahead with it..... Kaylas ...
Cytoxan
- By lovemykayla · Posted October 28, 2009
- In Children with nephrotic syndrome · 1 reply
- Thank you all for your replies. Yes it is a very tough decision and I agree it seems too soon for cytoxan. Pred is a awful drug too and they all are as a matter of fact. I have done some research on cytoxan ...
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