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New Here Posted by britfun67 on December 9, 2007, 1:44 pm 205.188.116.71 Hello everyone. My 3 year old daughter was Diagnosed back in April (by me as i am sure most of you found)after the docs kept telling me she had allergies and I would not accept that. I kept researching her symptoms until I stumbled across NS. She was 2 1/2 at the time. I took her back to the doc and made them test her pee and i was right. She was then admitted into the hosp and we were there 4 days. She responded well to Pred. remained neg for 137 days but after 37 days of being of Pred she got a cold and relapsed - did a month of Pred got her off, one month later she has just relapsed again but we are not sure why. She is back on 9CC of Pred but we are trying just every other day to start. I am devastated as all you other parents are. I keep her in a bubble as best i can - i guess i am over protective. We adopted her from China when she was 11 months old and she is the LOVE of my life - I cannot bear to see her suffer - she has already been through so much in her little life. However, I am babbling sorry. I am thrilled to find this group and sad that we all have to be here. hope to get to know some of you. God Bless Lorrayne xxx  Post a Response

Re: New Here Posted by Denise on December 18, 2007, 1:42 pm, in reply to "New Here" 71.184.240.174 Welcome... I am an adoptive mom as well! We adopted our son at almost 9yo, knowing he had FSGS. I haven't been checking in here much, as he has been doing well, but he has relapsed again, so we are back on a high dose of Pred, and going to start Cyclosporine soon. I know what you mean about what they have already been through... my son is from Haiti. But they are little fighters... his resilience always amazes me!  Post a Response

Re: New Here Posted by eccrane on December 17, 2007, 1:08 am, in reply to "New Here" 71.113.127.119 Hello Lorrayne, My daughter was just diagnosed with Minimal Change in October (similar diagnosis story unfortunately!). She will be turning 2 in January and we are currently tapering off of Prednisone. She has been doing really well and having very few side effects but despite our best efforts to keep her "bubbled" she has had a couple of colds/infections/viruses or something that have caused high fevers during the past month (fortunately her protein has stayed down). We make a big step down in our Pred this week going from 7mls every other day to 3.5mls every other - so I'm hoping that her immune system can boost up a bit. We've been VERY fortunate not to have any other side effects from the steroids other than chipmunk cheeks and faulty immune system. I'm scared about the taper and the possibility of relapse and steroid dependency but we are staying positive and trying to remember that we're doing all that we can. I would love to chat if you want to email - eccrane@verizon.net. I live in WA State. I will keep you in my thoughts, Casey --Previous Message-- : Hello everyone. My 3 year old daughter was : Diagnosed back in April (by me as i am sure : most of you found)after the docs kept : telling me she had allergies and I would not : accept that. I kept researching her : symptoms until I stumbled across NS. She : was 2 1/2 at the time. I took her back to : the doc and made them test her pee and i was : right. She was then admitted into the hosp : and we were there 4 days. She responded : well to Pred. remained neg for 137 days but : after 37 days of being of Pred she got a : cold and relapsed - did a month of Pred got : her off, one month later she has just : relapsed again but we are not sure why. She : is back on 9CC of Pred but we are trying : just every other day to start. I am : devastated as all you other parents are. I : keep her in a bubble as best i can - i guess : i am over protective. We adopted her from : China when she was 11 months old and she is : the LOVE of my life - I cannot bear to see : her suffer - she has already been through so : much in her little life. However, I am : babbling sorry. I am thrilled to find this : group and sad that we all have to be here. : hope to get to know some of you. God Bless : Lorrayne xxx : eccrane@verizon.net  Post a Response

Re: New Here Posted by britfun67 on December 19, 2007, 9:47 pm, in reply to "Re: New Here" 205.188.117.78 Hi everyone - thanks so much for replying. Molly is currently in remission from her 2nd relapse and we are at 6cc every other day right now for 2 weeks then 3cc for 2 weeks and then stop. We are the same, chipmonk cheeks and thats about it PHEW!!! I could not handle anything more, I am already growing more grey hairs by the min. Please all stay in touch :-) --Previous Message-- : Hello Lorrayne, : : My daughter was just diagnosed with Minimal : Change in October (similar diagnosis story : unfortunately!). She will be turning 2 in : January and we are currently tapering off of : Prednisone. She has been doing really well : and having very few side effects but despite : our best efforts to keep her : "bubbled" she has had a couple of : colds/infections/viruses or something that : have caused high fevers during the past : month (fortunately her protein has stayed : down). We make a big step down in our Pred : this week going from 7mls every other day to : 3.5mls every other - so I'm hoping that her : immune system can boost up a bit. We've : been VERY fortunate not to have any other : side effects from the steroids other than : chipmunk cheeks and faulty immune system. : I'm scared about the taper and the : possibility of relapse and steroid : dependency but we are staying positive and : trying to remember that we're doing all that : we can. I would love to chat if you want to : email - eccrane@verizon.net. I live in WA : State. : : I will keep you in my thoughts, : Casey : : : : --Previous Message-- : Hello everyone. My 3 year old daughter was : Diagnosed back in April (by me as i am sure : most of you found)after the docs kept : telling me she had allergies and I would not : accept that. I kept researching her : symptoms until I stumbled across NS. She : was 2 1/2 at the time. I took her back to : the doc and made them test her pee and i was : right. She was then admitted into the hosp : and we were there 4 days. She responded : well to Pred. remained neg for 137 days but : after 37 days of being of Pred she got a : cold and relapsed - did a month of Pred got : her off, one month later she has just : relapsed again but we are not sure why. She : is back on 9CC of Pred but we are trying : just every other day to start. I am : devastated as all you other parents are. I : keep her in a bubble as best i can - i guess : i am over protective. We adopted her from : China when she was 11 months old and she is : the LOVE of my life - I cannot bear to see : her suffer - she has already been through so : much in her little life. However, I am : babbling sorry. I am thrilled to find this : group and sad that we all have to be here. : hope to get to know some of you. God Bless : Lorrayne xxx : : :  Post a Response

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