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Children with FSGS
Discuss your experiences with FSGS here.
Tummy aches with Pred
- By alisan · New reply 5:44 pm
- 11 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 ...
Scrotal swelling/pain on Prednisone
- By alisan · New reply 4:56 pm
- 5 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 ...
Galactose trial
- By stretch · New reply November 6, 2009
- 52 replies
- Hi all. I was wondering has anyone tried the Galactose trial for fsgs ans what was the outcome ...
Incidence of Prograf Side Effects?
- By SoaringHigh · New reply November 1, 2009
- 17 replies
- Today is day 2 of Andrew's new meds and my husband and I wanted to know if many of those children taking Prograf or other antirejection meds see some of the side effects mentioned in the literature. Or ...
Nephspace suggestion ?????
- By MelissaShuford · New reply November 1, 2009
- 4 replies
- Is there or could there be a place on nephspace for young children to share their feelings, fears and concerns with each other ???? I know Nephspace been such a blessing for me to seek help on many issues ...
PLEASE can you HELP....?
- By AnsabIqbal · New reply October 31, 2009
- 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 ...
Scared and confused mommy
- By alisan · New reply October 31, 2009
- 7 replies
- My 5 year old son was dignosed with FSGS(collapsing variant) 2 weeks ago. So far he has been asymptomatic (no edema) but everything I've read about this disease is so scary. They want to try him on Pred ...
pH levels?? can anyone help
- By ashleighs_mummy · New reply October 30, 2009
- 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 ...
Cytoxan Remission!!
- By SHARONIRELAND · New reply October 30, 2009
- 3 replies
- Adam was put ona 12 week course of cytoxan(cyclophosphamide) 5 weeks ago as he was no longer responding to prograf and we couldnt get him off the high dose steriods. He was in "remission" for the past ...
Little Cyber Angels with Big Inspirations
- By MelissaShuford · New reply October 30, 2009
- 2 replies
- Please see Nephspace suggestion ???? regarding nephspace for smaller children to vent!!!!! Thanks!!!! Melissa and Emmy ...
NephCure Lunch and Learn in Los Angeles
- By CatherineL · Posted October 29, 2009
- 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 ...
FSGS and Tamiflu..
- By avb9920 · New reply October 29, 2009
- 2 replies
- Hi everyone...my daughters neph just prescribed her Tamiflu as a way to prevent the flu (she may have been exposed because her older sister has it, but we have kept them apart in different homes.) The ...
FSGS, Minimal Change, or NS in Arizona?
- By KESMOM · Posted October 26, 2009
- 0 replies
- Wondering if there are other families in Arizona with Children or family members with FSGS, minimal change disease, or nephrotic syndrome. If I can find other families in Arizona, we can try to have a ...
What does remission really mean?
- By SoaringHigh · New reply October 23, 2009
- 5 replies
- I know this may seem elementary but I am just not getting it. I guess our recent understanding is that if the kidney tissue is scarred (FSGS), it is permanent and can't be reversed. If the damage can't ...
Homeopathic treatment and Nephrotic Syndrome
- By MariekeV · New reply October 22, 2009
- 22 replies
- Hi to all, Who has tried homeopathics with a child with nephrotic synrome. Who can tell me what kind of medication the homeopathic advisor has given you or your child to regulate what? What kind of problems ...
Low cyclosporin levels
- By laylasimone · New reply October 22, 2009
- 4 replies
- Hi, we have a new problem, laylas cyclosporin levels are lower than we want, but her dose is at its highest.it has dropped quite dramatically in one week. How and why ...
New FSGS and Afraid
- By SoaringHigh · New reply October 21, 2009
- 23 replies
- My 13 year old was just diagnosed with FSGS yesterday (biopsy 2 weeks ago) and it feels like our world is turned upside down. He is so swollen, has an infection and no energy at all. he was suppose to ...
No/Low Sodium Foods--Post them here!
- By magdelena · New reply October 20, 2009
- 47 replies
- Another person's post about food inspired me to start this one. Please post any great foods that you have found or ideas you have had to spice foods up! Here are some of ours: No sodium peanut butter ...
Orange juice
- By laylasimone · New reply October 20, 2009
- 14 replies
- Hi, has anyone else had diarrhea if drinking diluted orange or orange juice whilst on cyclosporin and pred ? Just trying to rule out orange out of layla's diet as she has had orange to drink twice in ...
rollercoaster ride
- By kalebsmommy · New reply October 19, 2009
- 1 reply
- Wow what a rollercoaster ride kidney disease is! This May we took our son in for a kindergarten physical where they discovered protein in his urine, he had a biopsy in July, and now a peritoneal catheter ...
Events and resources
