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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 : : :

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Message Thread: We are new here too!! - Teeswa November 25, 2007, 6:25 pm Re: Naturopath - s-nathan December 17, 2007, 4:33 pm Re: We are new here too!! - aquamarine December 1, 2007, 3:53 pm Wendy - britfun67 December 9, 2007, 1:46 pm Rituximob- to Wendy - Mika December 1, 2007, 10:22 pm Re: We are new here too!! - Mika November 29, 2007, 12:09 pm Re: We are new here too!! - RalucaMac November 27, 2007, 12:13 am Re: We are new here too!! - RalucaMac November 27, 2007, 12:03 am « Back to thread

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