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Recently diagnosed daughter with NS

Posted by Lolsmom on July 9, 2008, 2:51 pm
77.102.73.174 | Message modified by user Lolsmom July 10, 2008, 4:49 pm

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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