Children with FSGS

Discuss your experiences with FSGS here.

Discussions

Westchester NY NephCure Walk Oct 9

CatherineL
  • By CatherineL · Posted September 30, 2011
  • 0 replies
  • Our NephCure Walk to raise awareness and funds for research will be held on October 9 in Yorktown Heights NY. FREE Go to www.thenephcurewalk.org for information and to register. All are welcome. Kids ...

New to Community: Collapsing FSGS...Input needed and appreciated!

IBelieveNMiracles
  • By IBelieveNMiracles · New reply September 7, 2011
  • 2 replies
  • This is my very first post, although I have been reading so much of your inspiring stories and praying for this entire community every day. I have many questions and so much to share (or vent about I ...

Dialysis Inevitable?

J_smomxs2
  • By J_smomxs2 · New reply August 31, 2011
  • 4 replies
  • I have been wondering the chances of my son having to be on dialysis he is five and was dx with FSGS September of last year. It seems to me that most of the people with this disease eventually are in ...

hospital switch

malette1
  • By malette1 · New reply August 23, 2011
  • 1 reply
  • Has anybody used Johns Hopkins for their child and switched to DC Children's Hospital? Any pros/cons, etc. My husband spoke with a nurse from Children's, and gave us a bit of information that has just ...

RDA Protein Intake

wpdenzel
  • By wpdenzel · New reply August 12, 2011
  • 4 replies
  • My daughter has low albumin and we have hearing conflicting recommendations from registered dietitians. Both dieticians specialize in kidney patients. One says to increase her daily protein intake to ...

Great Dr Appt this am

KathyU
  • By KathyU · New reply August 7, 2011
  • 1 reply
  • So went to our quarterly appt. He is weaning Bryan off of Pred. Still taking 8mg/day of tacrolimus but he will be on that for a while anyway. Said the kidney function is normal although he is spilling ...

FSGS autoimmune?

kittyhawk
  • By kittyhawk · New reply August 5, 2011
  • 3 replies
  • I'm starting to believe that it may indeed be connected with autoimmune diseases. I had Hashimoto's Thyroiditis when I was 6yrs old and was left with Hypothyroidism. I've also got Rheumatoid Arthritis ...

Long Island, NY Support Group

CatherineL
  • By CatherineL · Posted July 28, 2011
  • 0 replies
  • Our Long Island Support Group will meet this Saturday, July 30 at 1:00 p.m. at the Holtsville Ecology Center on Buckley Road. Contact Catherine Lepone for information. clepone@nephcure.org ...

FSGS in Childerns

elsa_4year_F
  • By elsa_4year_F · New reply July 26, 2011
  • 7 replies
  • I am not sure why my child is not responding from any medicine from past one year not even 15% health improvement, little scared, what happen in next few year, any suggesting please email ...

GFR

varga
  • By varga · New reply July 20, 2011
  • 1 reply
  • ok this is for adults and children. does anyones dr. test specifically their GFR? my dr. says bun and creatinine tell you what kidney function is. april his bun was 16 and hia creaTININE WAS 1.17 what ...

FSGS maybe?

jeansiddi
  • By jeansiddi · New reply July 17, 2011
  • 10 replies
  • The neph has stated that she thinks that our son has FSGS and wants a biopsy, but from what i understand and from the information i have gathered is it really necessary as it seems that unless they take ...

Another Galactose question

Julieb111
  • By Julieb111 · New reply July 14, 2011
  • 2 replies
  • Hi we are new to the community. Our Neph just told us about the galactose research today but from what I've been reading in old posts, the trials are no longer. My 13 year old daughter has been in partial ...

Care for children

4mytybear
  • By 4mytybear · New reply June 29, 2011
  • 2 replies
  • I am a widow with 3 children. I work a fulltime job to pay for the insurance for my son. My son is 12 and just had his kidneys removed yesterday. he will need some time to heal. Is there a program that ...

How to calculate to get a GFR

BABYWITHFSGS
  • By BABYWITHFSGS · New reply June 29, 2011
  • 2 replies
  • I was just wondering if anyone knows how to calculate to get a GFR in a child ...

FSGS cause not dectable with 2 biopsies

roselover
  • By roselover · New reply June 26, 2011
  • 10 replies
  • My daughter was diagnosed 8 years ago with FSGS, unfortunately the biopsy did not get enough cells could not tell us the cause of her FSGS. Because she had other autoimmune diseases they decided to attempt ...

Help w/transportation to Shands doctor?

kittyhawk
  • By kittyhawk · New reply June 15, 2011
  • 1 reply
  • My 16yr old son was just diagnosed with FSGS. Not only will he be seeing his neph doc locally, he will also be seen by a neph doctor at Shands Childrens Hospital where he got his biopsy and may be where ...

high blood pressure - calcium channel blockers?

cheryldehaney
  • By cheryldehaney · New reply June 13, 2011
  • 5 replies
  • My daughter is 11 and had ns since 2004, FSGS 2006. On Tacrolimus, Losartan, Enalapril and alfacalcidol. In the last six months her blood pressure has stayed high, 135 systolic average, after increase ...

acute interstitial nephritis

mustanggal
  • By mustanggal · Posted June 11, 2011
  • 0 replies
  • Hello, I am looking for any information. Daughter, 16, was Stage 1 for 6 months and then went to stage 2(barely) and then stage 3 in less than 3 weeks. (For clarification- stage 2 to 3 within 6 weeks ...

Stopping Prograf

Curtnik
  • By Curtnik · New reply June 3, 2011
  • 6 replies
  • My daughter has been on Prograf for 16 months now and thankfully in remission for 6 months. We are very lucky that Prograf has worked for her even though it took 10 months to work. Does anyone have experience ...

New information

Trigger
  • By Trigger · New reply May 18, 2011
  • 2 replies
  • Hello my 5 year old boy has FSGS and we are from Australia, I have just read this acticle in the Australian newspaper ( sorry I have cut and pasted article not very computer Literate )- Just wondering ...

Things you can do

Discussion topics

Community leaders