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Children with FSGS
Discuss your experiences with FSGS here.
I'm so depressed...
- By avb9920 · New reply 11:18 pm
- 3 replies
- Hi all... I feel like I am really spiraling down. My three year-old daughter, the sweetest thing in my world, was diagonosed in May of 08 with FSGS. I cry and get upset every so often, but lately, if ...
Advice please!
- By SHARONIRELAND · New reply 2:36 pm
- 6 replies
- Can any please advise me on what will happen next! My son is going into his 8th week of cyclophosphamide treatment, he relapsed 2 weeks ago and thankfully today is his 3rd day negative. He was on prograf ...
Heading Towards Transplant Road
- By kalebsmommy · New reply yesterday at 2:57 pm
- 5 replies
- My son was diagnosed with FSGS this summer. His kidneys showed 50% scarring. They took him off of prednisone and put him on cyclosporine, but that was ineffective. A month ago he was given a peritoneal ...
What does remission really mean?
- By SoaringHigh · New reply November 19, 2009
- 7 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 ...
SPILLING QUESTION
- By BABYWITHFSGS · New reply November 19, 2009
- 3 replies
- My son is spilling 3+ but he has no swelling! He just got over a relapse about 2 months ago at that time still had no swelling! What does that mean is he still in a somewhat of a remission? In the past ...
Help the Albumin Levels are not higher!
- By SoaringHigh · New reply November 19, 2009
- 10 replies
- My son 13, has new diagnosis of fSGS and has been on prograf and 2 blood pressure meds for 4 weeks now. We are tapering his Prednisone down where he only has 3 doses left. His blood work from this week ...
Positive Swine flu
- By BABYWITHFSGS · New reply November 16, 2009
- 9 replies
- My son was exposed to the swine flu about a week ago so we started him on tamiflu as a percaution he got the H1N1 shot on monday. This morning he woke up not himself kind of cranky. I took him to the ...
What the heck...they think I am crazy and over reactive...that I
- By MelissaShuford · New reply November 16, 2009
- 14 replies
- OMG am I mad, its enough to have too many Dr's telling you many different things...that now my pediatrician spoke with neph...and apparently think I am over reacting with concern regarding the info I ...
Scared and confused mommy
- By alisan · New reply November 14, 2009
- 8 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 ...
Scrotal swelling/pain on Prednisone
- By alisan · New reply November 14, 2009
- 12 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 ...
Tummy aches with Pred
- By alisan · New reply November 11, 2009
- 13 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 ...
OK What came first the Chicken or the Egg...FSGS vs autoimmune something
- By MelissaShuford · New reply November 10, 2009
- 4 replies
- Emmy's short time with FSGS has not been a road less traveled...lots of opinions from multiple physicians...the ride on the roller coaster is never very short...we think we understand what to do...then ...
Adrenaline!!!
- By SHARONIRELAND · New reply November 10, 2009
- 2 replies
- I have been thinking that there must be a link between fsgs and excitement or panic..EVERYTIME our son is stressed or excited..he relapses.. I have been looking on the internet for reasons for this and ...
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 ...
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 ...
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