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Children with FSGS
Discuss your experiences with FSGS here.
hair loss
- By momray · New reply September 20, 2009
- 4 replies
- My teenage daughter has been on vincristine, lomstine, and cisplatin for months. She lost her hair either from this or the radiation. Needless to say it is very hard for a girl this age to lose her hair ...
Living with FSGS without immunosuppressants?
- By SmileGodLovesYou · New reply September 16, 2009
- 9 replies
- Does anyone have active FSGS with continued protein loss but isn't using immunosuppressants? My daughter is on Prednisone 40 mg every other day and this is on a gradual decrease to give her a break from ...
Something is Wrong With the System!
- By magdelena · New reply September 16, 2009
- 5 replies
- I was just doing some searches for postings that discuss genetic form of FSGS and I can't believe the disparity that exists with the genetic testing! I read from someone that their doctor wouldn't approve ...
best ped. neph. in NY/New Englad
- By lscaney · New reply September 15, 2009
- 5 replies
- Hi. Any suggestions for a great nephrologist in the NY/New England area? We live in Stamford, CT (near NYC) and go to Yale. My son was diagnosed w/MCD with a mesangial proliferative variant. Some of the ...
kidney diet
- By mom_of_an_angel · New reply September 14, 2009
- 3 replies
- My daughter, 17 y.o., was recently told to watch her phosporous and potassium intake. Can anyone recommend a web site that shows quick and easy meals, even fast food? Thank you ...
Allergy meds. just help symptoms?
- By Vivigirl · New reply September 8, 2009
- 19 replies
- My daughter has went from MCNS to newly diagnosed FSGS. She has a ton of allergies. Her nephrologist said no allergy testing and no medication for the allergies. Her seasonal allergies make her eyes water ...
Test results should be in
- By chasesmom · New reply September 7, 2009
- 12 replies
- My son's genetic testing results should be back for his appointment wtih his neph on Wednesday. I am nervous, yet excited, for the results. He has been on many meds for FSGS for over 6 months now and ...
Any athletes on P/D?
- By magdelena · New reply September 7, 2009
- 3 replies
- Would love to hear from anyone whose children are athletes (or adults who are athletic too) and are on peritoneal dialysis. My son's high activity level clearly has a huge impact on his p/d settings ...
Allergy testing while on immunosuppressants?
- By EllaM · New reply September 7, 2009
- 10 replies
- I'm pretty sure I've read somewhere that skin prick testing for food and environmental allergies is ineffective while on immunosuppressants like pred or ciclosporin but does anyone know if blood tests ...
Em's Rocky MT Spotted Fever
- By MelissaShuford · New reply September 4, 2009
- 8 replies
- Em is so tired !!!!! She also had 3+ protein last pm. we called neph today and we are to dip in am. She went to school and seems okay once she got there. Just worried...she will finally see rheumatology ...
TRINITY
- By supportmylady · New reply August 31, 2009
- 10 replies
- HELLO NEPHSPACE,,,SORRY ITS BEEN A WHILE. TRINITY HAD BOTH OF HER KIDNEYS REMOVED IN JANUARY,,WE HAVE BEEN DOIN PD DIALISIS EVERY NIGHT,, SHE ALSO TAKE EPOGYN SHOTS TWICE A WEEK,ALONG WITH A HOST OF OTHER ...
My Em,school germs covered..tick bite PROBLEM !!!!
- By MelissaShuford · New reply August 31, 2009
- 4 replies
- Well of all things...good planning,504 plan in place,infection control forefront,diet changes and packed school lunches,great teachers and the first week of school BAM a stupid tick bite from 8/11 screws ...
Confused Pathologist?
- By kalebsmommy · New reply August 28, 2009
- 6 replies
- We just received information about my son's biopsy. The pathologist was confused by what he/she saw. We have been told that they are going to call it focal sclerosis. We will go in and see the neph on ...
Peritoneal Dialysis--Going Great!
- By magdelena · New reply August 25, 2009
- 3 replies
- My son has been on peritoneal dialysis now for about 4 weeks and it is going really well. He had so many side effects with the hemo dialysis, and those are all gone with p/d. It is wonderful not to have ...
Meeting for Emmy's 504 plan
- By MelissaShuford · New reply August 25, 2009
- 5 replies
- Thanks to everyone for your input to my previous discussion regarding school fears and issues. I took this info and composed a plan I felt was realistic for all parties involved. We met for about 1 1/2 ...
FLU shots should you get it
- By BABYWITHFSGS · New reply August 25, 2009
- 21 replies
- I was just wondering if anyones neph. drs. told them to have their child get a flu shot this year. My childrens pediatrition called me to let me know that they are having a flu clinic at the end of September ...
Prograf
- By loveforaubs · New reply August 10, 2009
- 10 replies
- Our pediatric nephrologist wants to start our daughter on Prograf. We have seen the warnings/side effects of the med and were wondering if anyone has had any experience with the med that they would share ...
School is upon us need some input
- By MelissaShuford · New reply August 9, 2009
- 7 replies
- Getting ready to start our first 504 plan and need/want all the input I can have to help EMMY!!!! Please reply ASAP with any advice to use at school to keep her well...God Bless all of you and best of ...
Rituximab
- By Mika · New reply August 3, 2009
- 12 replies
- Hi everyone. I have written about my son before but for those of you interested in rituximab I have some updates. Luke is 23 months old now, he was diagnosed with FSGS at 13 months after developing extreme ...
In the beginning of Dx FSGS
- By MelissaShuford · New reply July 25, 2009
- 7 replies
- Hi everyone, I am a little uncertain and scared and have lots of questions. Emmy my daughter has early proliferative FSGS. She is 10yrs old. She is chronically tired and gets sick with weird stuff all ...
Events and resources
