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Re: Recently diagnosed daughter with NS

Posted by aquamarine on July 12, 2008, 3:16 pm, in reply to "Recently diagnosed daughter with NS"
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Hi Tracy and Lol I am so sorry to hear of the distrssing time you have all been suffering my daughter as you may of read has steroid resistant NS for nearly 3 yrs now she too will be 8 at the end of August. We too live in the UK in horley surrey where abouts are you? we go to the Evalina childrens hospital in london for our treatments. I too use the dipsticks daily are we have neg to trace most of the time now. Life will become a little easier with time this website site is great just to know you are not alone!!! Take care Wendy and Hannah --Previous Message-- : Hi, My daughter is 8 and was diagnosed almost : six months ago with NS they believe MC. I : have sat and read all the posts and have : found much comfort in seeing all the : families who are coping but having similar : struggles to us. Back in Feb, I had noticed : that Lol had puffy eyes for a few days and : just thought she was coming down with : something. She started to complain of tummy : ache so i took her docs, he tested her urine : and asked that we come back 1st thing the : next day for a blood test. She got worse : throughout the night and when I took her to : the docs she passed out twice. I can't tell : you how scared I was realising that : something was very wrong. She was : immediately admitted to hosp and was on a : drip, blood pressure meds, antibiotics, pred : etc etc before we knew it. I don't think : anyone can ever be prepared for something : like that. She had an infection in her : abdominal cavity which was makeing her very : sick. Anyway after 8 days in hosp, we came : home. Since then as you all know, there : comes a whole host of probs from the pred : such as insomnia, weight gain, cushings, : headaches, excessive hair growth on body and : in Lols case the drastic thinning of her : hair on her head. We are nearing the end of : her course of treatment and we are finding : that she can be very aggressive sometimes : and has mood swings and temper tantrums all : of which are very out of character. After : her outbursts the poor luv is crushed by the : things that she has said and all we can do : is hold her and tell her that its not her : fault.Has enyone else experienced this? : We use the albustix and almost every day her : protein is neg or trace, we have very very : occassionally had a +1 so I am hopefull but : after having researched NS, there does not : seem to be a pattern so I think we wait and : see what happens when the pred finishes. I : remind myself every day that there are worse : things to have your child diagnosed with but : to be honest some days I just cry. Anyway I : really don't feel so alone now, thank you : for reading our story. : : Tracy - Mom to Laura(Lol as she is known)8 : years(NS)and Jess 12 years UK : :

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Message Thread: Recently diagnosed daughter with NS - Lolsmom July 9, 2008, 2:51 pm Re: Recently diagnosed daughter with NS - aquamarine July 12, 2008, 3:16 pm « Back to thread

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