[ KidComm Nephrotic Syndrome Parents Place ]

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We are new here too!! Posted by Teeswa on November 25, 2007, 6:25 pm 209.115.255.165 Hi all. My name is Theresa and I have a four year old son named Daylen who was diagnosed with Nephrotic syndome in May. They are sending him for a biopsy because he seems to keep relapsing. I am going to try a naturopathic DR in December to see if there is something they can do to help. I am still trying to wrap my head around this whole thing, I keep coming up with questions and I am glad to read all the e-mails and I don't feel so alone. I have two other kids. both girls aged 9 and 1 1/2. My husbands currently works away from home so some days seem crazier than others with little release for myself. I also have a normally sweet caring and loving little boy, who after being on Prednisone changes dramatically. It is so hard to watch and having to limit fluid intake and watch his sodium, I feel like I am always saying no to him about something and it breaks my heart. But you have to do what is best for them even though they don't understand. I am not sure what it is that they are looking for in this biopsy, we go to our Neph Dr in December. I wish you all the best for yourselves and your family's and look forward to getting to know all of you. Take care and be strong! Theresa  Post a Response

Re: Naturopath Posted by s-nathan on December 17, 2007, 4:33 pm, in reply to "We are new here too!!" 40.0.40.10 Check http://www.naturopathic.org/findannd.php We found a naturopath in Lafeyette Indiana - who had trained in Canada!! (after doing a web search and after reading posting from another parent who had taken child to a naturopath)  Post a Response

Re: We are new here too!! Posted by aquamarine on December 1, 2007, 3:53 pm, in reply to "We are new here too!!" 80.195.180.238 My daughter was diagnosed with nephrotic syndrome back in Aug 05 when we spent 10 weeks in hospital we had a kidney biopsy and tried steroids and when they discovered my daughter was steroid resistant they tried cyclopsorine but that did not work so the following april(06) my daughter was given rituximab and then about 6-8 weeks later her urine went negative for the first time since being diagnosed 8 months earlier. She then done 15 months in remission until june this year when she relapsed twice in 6 weeks but from having the rituximab they believe she is know longer steroid resistant and since relapsing for the second time she has gone back on steroids and cyclosporine and they have put her back in remission and we are awaiting to see her consultant in london in december to find out when we can have the rituximab again. Rituximab was a good choice for my daughter and she was a bit of a guinea pig for the hospital but we had no other choice and thankfully it worked are were negative for 15 months. This website is great for all us parents just to read that we are not alone out there Take care Wendy England --Previous Message-- : Hi all. My name is Theresa and I have a four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa :  Post a Response

Wendy Posted by britfun67 on December 9, 2007, 1:46 pm, in reply to "Re: We are new here too!!" 205.188.116.141 I am from england too but live in North carolina - I am sooooooooooooooo sorry about your daughter. How are you finding the doc's over there?????? Love Lorrayne --Previous Message-- : : My daughter was diagnosed with nephrotic : syndrome back in Aug 05 when we spent 10 : weeks in hospital we had a kidney biopsy and : tried steroids and when they discovered my : daughter was steroid resistant they tried : cyclopsorine but that did not work so the : following april(06) my daughter was given : rituximab and then about 6-8 weeks later her : urine went negative for the first time since : being diagnosed 8 months earlier. She then : done 15 months in remission until june this : year when she relapsed twice in 6 weeks but : from having the rituximab they believe she : is know longer steroid resistant and since : relapsing for the second time she has gone : back on steroids and cyclosporine and they : have put her back in remission and we are : awaiting to see her consultant in london in : december to find out when we can have the : rituximab again. Rituximab was a good choice : for my daughter and she was a bit of a : guinea pig for the hospital but we had no : other choice and thankfully it worked are : were negative for 15 months. : This website is great for all us parents : just to read that we are not alone out there : Take care : : : Wendy : : England : : : : --Previous Message-- : Hi all. My name is Theresa and I have a : four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa : : :  Post a Response

Rituximob- to Wendy Posted by Mika on December 1, 2007, 10:22 pm, in reply to "Re: We are new here too!!" 24.57.101.106 Hi Wendy. Please let us know how your daughter does when she gets rituximob again. Here in Canada rituximob is very new and our doctor does not know what to expect long term. My son got rituximob in june of this year and right now he is doing very well but we are very worried about the future since we do not know what to expect. Also, how many doses did your daughter get the first time? Our son got four doses, over four weeks. If you like you could email me, I would greatly appreciate any information, my email is gabe_mika@cogeco.ca Thanks, Dominika --Previous Message-- : : My daughter was diagnosed with nephrotic : syndrome back in Aug 05 when we spent 10 : weeks in hospital we had a kidney biopsy and : tried steroids and when they discovered my : daughter was steroid resistant they tried : cyclopsorine but that did not work so the : following april(06) my daughter was given : rituximab and then about 6-8 weeks later her : urine went negative for the first time since : being diagnosed 8 months earlier. She then : done 15 months in remission until june this : year when she relapsed twice in 6 weeks but : from having the rituximab they believe she : is know longer steroid resistant and since : relapsing for the second time she has gone : back on steroids and cyclosporine and they : have put her back in remission and we are : awaiting to see her consultant in london in : december to find out when we can have the : rituximab again. Rituximab was a good choice : for my daughter and she was a bit of a : guinea pig for the hospital but we had no : other choice and thankfully it worked are : were negative for 15 months. : This website is great for all us parents : just to read that we are not alone out there : Take care : : : Wendy : : England : : : : --Previous Message-- : Hi all. My name is Theresa and I have a : four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa : : :  Post a Response

Re: We are new here too!! Posted by Mika on November 29, 2007, 12:09 pm, in reply to "We are new here too!!" 24.57.101.106 Hi. I posted about my son here before. He is now 21 months old and he was diagnosed with Nephrotic syndome in april. Because his condition was so bad they did a biopsy after a couple of weeks and he was diagnosed with FSGS. We spent three months in the hospital and he was VERY sick. They tried cyclesporin but he had a bad reaction to it and could not be on it. Finally they tried rituximob and six weeks later his urine was negative for protein. Rituximob destroys all the B cells in the immune system and it takes about 9 to 12 months for them to return. The doctors do not know how he will do once the B cells are back but are hoping that he will continue to be healthy. Because he has no B cells he needs to get iv ig every six weeks but thats not a big deal. Other then that you would never know that he was ever sick. He looks and acts normal, his kidney function is normal and all his blood tests come back normal. I think that anybody whos child was diagnosed with FSGS should try retuximob since all the other drugs used to treat this are toxic and do not give as good results as this one. However it might not be easy since this medication is very expensive. Luke got four doses at $5000 per dose. We live in Ontario Canada and the government was willing to cover the cost but thats mainly because Luke could not be on cyclesporin (it would kill him) and the only other option was to take his kidneys out. Also because retuximob has only been used a few times to treat FSGS most doctors are very sceptical about using it and long term outcome is not known. However since prognosis for many children with steroid resistant Nephrotic syndrom is not very good then it is worth trying. I will be more then happy to give you any more info about this if you need it. Good Luck to all, Dominika --Previous Message-- : Hi all. My name is Theresa and I have a four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa :  Post a Response

Re: We are new here too!! Posted by RalucaMac on November 27, 2007, 12:13 am, in reply to "We are new here too!!" 71.107.31.199 Hi Theresa, I am Raluca and you can read about my son Owen in a previous posting. How many times did Daylen relapsed? Did he relapse during the steroid treatment or after? Where are you from? I would like to see what the natoropath dr. is telling you, if there is anything they can do for your son. I used to live in Canada and naturopath doctors are licenced there and you can easily find one. I live now in California, US I was not able to locate one close by. I wish you and Daylen all the best and please keep in touch. Raluca --Previous Message-- : Hi all. My name is Theresa and I have a four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa :  Post a Response

Re: We are new here too!! Posted by RalucaMac on November 27, 2007, 12:03 am, in reply to "We are new here too!!" 71.107.31.199 --Previous Message-- : Hi all. My name is Theresa and I have a four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa :  Post a Response

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