Comments on: A little background on FSGS http://notesfromhome.com/2009/03/30/what-is-fsgs/ Life. Home. Parenting. Food. Geek. Wed, 16 May 2012 08:58:16 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: ellahttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-11478 ella Fri, 17 Feb 2012 14:25:27 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-11478 Thank you Steve for your kind words of advice, it is good to know that you have found a regime which works for your daughter. I wrote this post about three years ago and since then we have done many of the same things you have done and our son is in an unsteady remission. I am dealing with his disease much better than I initially was, although much of that is due to the fact that he is much better day-to-day than he was. I hope your daughter continues to have good kidney function and that you both remain hopeful for her future. Thank you Steve for your kind words of advice, it is good to know that you have found a regime which works for your daughter. I wrote this post about three years ago and since then we have done many of the same things you have done and our son is in an unsteady remission. I am dealing with his disease much better than I initially was, although much of that is due to the fact that he is much better day-to-day than he was. I hope your daughter continues to have good kidney function and that you both remain hopeful for her future.

]]> By: Stevehttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-11458 Steve Wed, 08 Feb 2012 12:53:27 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-11458 My daughter, now 18, has had FSGS since she was 6. I wanted to offer you words of hope. While she started off with Prograf (after steroids), which nearly put her in ESRD, we switched nephs, went on an ACE/ARB/Statin regimen, and stabilized her albumin/creatinine, albeit at a low level. We added supplements, including fish oil, vitamin D3 and gamma/delta tocotrienol. Our daughter is not in remission, but her kidney function and albumin levels are normal now (which is a real miracle). Though the years were very hard on her and all of us, she is now attending college studying health sciences. She almost views herself as like everyone else now.We always wait for the shoe to drop, not knowing what her future brings, but we have never given up hope. And never will.My advice to you is to become your child's advocate, with her nephrologist and at school. I'm sorry to say you will never go back to the "normal" life, and you'll probably want to cry more tha you'll admit, but the joy at helping your child become an adult with a hopeful future probably transcends the vast majority of what "normal" people can hope to acheive in their lifetimes.Good luck and God bless. My daughter, now 18, has had FSGS since she was 6. I wanted to offer you words of hope. While she started off with Prograf (after steroids), which nearly put her in ESRD, we switched nephs, went on an ACE/ARB/Statin regimen, and stabilized her albumin/creatinine, albeit at a low level. We added supplements, including fish oil, vitamin D3 and gamma/delta tocotrienol. Our daughter is not in remission, but her kidney function and albumin levels are normal now (which is a real miracle). Though the years were very hard on her and all of us, she is now attending college studying health sciences. She almost views herself as like everyone else now.

We always wait for the shoe to drop, not knowing what her future brings, but we have never given up hope. And never will.

My advice to you is to become your child’s advocate, with her nephrologist and at school. I’m sorry to say you will never go back to the “normal” life, and you’ll probably want to cry more tha you’ll admit, but the joy at helping your child become an adult with a hopeful future probably transcends the vast majority of what “normal” people can hope to acheive in their lifetimes.

Good luck and God bless.

]]> By: carmenhttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-11228 carmen Mon, 21 Nov 2011 20:45:09 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-11228 my son is 14 i found out he has fsgs for the pass 3 years its killing me to no there nothing we can do i pray to god everyday is there anything we can do or start some type of program to help find a cure i cant live with out my son he is my world please help me understand why him... a MD told me that they only give 2 transplant per person is that true ???? i have lots of questions please contact when u can.... Thank u my son is 14 i found out he has fsgs for the pass 3 years its killing me to no there nothing we can do i pray to god everyday is there anything we can do or start some type of program to help find a cure i cant live with out my son he is my world please help me understand why him… a MD told me that they only give 2 transplant per person is that true ???? i have lots of questions please contact when u can…. Thank u

]]> By: Monahttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-10843 Mona Fri, 09 Sep 2011 07:28:40 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-10843 Hi Ella, I read your story and can say without hesitation that you are a brave mom. I cannot imagine what you go through every day with your precious son. I feel your pain, even though my sons are healthy I cannot bear the thought of going through something like this. I am almost scared to think about how I would deal with a situation like yours. I can barely handle my little boys getting sick with the flu, as I break down and therefore useless.You are an inspiration and an example to all moms who are going through similar situations. Good luck to you and your family and I hope from the bottom of my heart that your son gets healed. You will all be in my prayers. Hi Ella,
I read your story and can say without hesitation that you are a brave mom. I cannot imagine what you go through every day with your precious son. I feel your pain, even though my sons are healthy I cannot bear the thought of going through something like this. I am almost scared to think about how I would deal with a situation like yours. I can barely handle my little boys getting sick with the flu, as I break down and therefore useless.

You are an inspiration and an example to all moms who are going through similar situations. Good luck to you and your family and I hope from the bottom of my heart that your son gets healed. You will all be in my prayers.

]]> By: withUhttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-9968 withU Sun, 26 Jun 2011 14:05:42 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-9968 My son is 12, has had FSGS since he was 7 and has not responded to any treatments. Everything you say applies to him/us. None of the other kids in the clinic respond to the meds with the headaches and vomiting like my son and yours and so even the doc, who is great, does not understand just how bad it is to watch your child have so little quality of life. Reading your comments is like talking to myself. Hang in there. Every so often I think, how can we/he carry on and yet 5 years have passed and even though life for him is very hard, he still laughs, has a great sense of mimicry and humour and things he enjoys, be they much, much fewer than other kids. My son is 12, has had FSGS since he was 7 and has not responded to any treatments. Everything you say applies to him/us. None of the other kids in the clinic respond to the meds with the headaches and vomiting like my son and yours and so even the doc, who is great, does not understand just how bad it is to watch your child have so little quality of life.
Reading your comments is like talking to myself. Hang in there. Every so often I think, how can we/he carry on and yet 5 years have passed and even though life for him is very hard, he still laughs, has a great sense of mimicry and humour and things he enjoys, be they much, much fewer than other kids.

]]> By: How to cope when your child is diagnosed with a serious illness - most | leasthttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-1469 How to cope when your child is diagnosed with a serious illness - most | least Thu, 20 Aug 2009 14:18:20 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-1469 [...] six months since William was diagnosed with FSGS. (For anyone who wants to catch up on his story there are posts here about FSGS, the disease he [...] [...] six months since William was diagnosed with FSGS. (For anyone who wants to catch up on his story there are posts here about FSGS, the disease he [...]

]]> By: Madeleinehttp://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-1467 Madeleine Tue, 31 Mar 2009 21:01:24 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-1467 Thinking of you and all that you are going through. Thinking of you and all that you are going through.

]]> By: mumof4http://notesfromhome.com/2009/03/30/what-is-fsgs/comment-page-1/#comment-1468 mumof4 Tue, 31 Mar 2009 18:01:44 +0000 http://mostleast.com/2009/03/30/a-little-background-on-fsgs/#comment-1468 I think of you so often but I can't begin to find any words to help..... You are so strong - especially with the other boys too. Poor William. I hope he shows some progress soon. x I think of you so often but I can’t begin to find any words to help…..
You are so strong – especially with the other boys too. Poor William. I hope he shows some progress soon.
x

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