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Children with FSGS
Discuss your experiences with FSGS here.
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 ...
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 ...
Repeat Biopsy
- By KESMOM · New reply October 19, 2009
- 1 reply
- My son was diagnosed with FSGS in April of this year, confirmed with a biopsy. His doctors said at some time down the road we will do another biopsy. I'm wondering what others have experienced. If you've ...
Question regarding Proteinuria
- By MelissaShuford · New reply October 18, 2009
- 3 replies
- Emmy is at 0 to trace protein for the last 6 days on first morning urine dips. I am excited about this but my question is....why does it not matter that she spills 1-3 plus protein in her urine every ...
Where Do "Friends" Go
- By MelissaShuford · New reply October 9, 2009
- 12 replies
- Do you ever wonder where all your friends go when a loved one gets sick? Then you find yourself sick to !!!! Its like there everywhere when you are healthy and vibrant but when life sends you a different ...
Up to Date Inc.
- By MelissaShuford · Posted October 8, 2009
- 0 replies
- I found this website that has medically correct and up to date info. I have found it very useful...the only catch is you have to subscribe and it costs...I felt like it was money well spent...www.uptodate.com....it ...
please help! how do you change medicines???
- By obima · New reply October 6, 2009
- 5 replies
- hi i was wondering if i could ask the following questions please.... currently i am on 3g of cellcept and 20mg of prednisone, im in remission, but the doctor insists cellcept is not working (been taking ...
Confused, cared and bewildred
- By kalebsmommy · New reply October 5, 2009
- 1 reply
- My son was diagnosed with FSGS after his biopsy in July. the results confused the (We only found out about his kidneys after a routine kindergarten physical.) Now he is going to be put onto peritoneal ...
Sore tummy
- By stretch · New reply September 29, 2009
- 10 replies
- Hi is there anyone else with fsgs who suffer from constant sore tummy's, and what is your remedy for it? Giorgia get it daily and she wont eat or do anything, doctor dont no what todo have tried a medication ...
Emmy's difficulty establishing trust with MD
- By MelissaShuford · New reply September 28, 2009
- 8 replies
- We had our visit with Em's primary MD today and I was really disappointed. His ego seems to be hurt because she won't hardly talk to him. She is timid and shy not to mention scared at any MD office. He ...
Genetic Form of FSGS?
- By magdelena · New reply September 26, 2009
- 4 replies
- Anyone out there have experience with familialr/genetic form of FSGS? My son had genetic testing done that was inconclusive. Basically he has two mutations that could be linked to genetic FSGS, but the ...
Creatinine slowly trending up?
- By Emmas_mom · New reply September 25, 2009
- 4 replies
- Emma's renal labs are still in normal range, however her creatinine level has slowly been creeping up over the past year and on her last lab report it was 0.68. (normal being .29 - .68) Her nephrologist ...
Events and resources
