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Re: Skyler and whats next?

Posted by britfun67 on January 22, 2008, 1:05 pm, in reply to "Re: Skyler and whats next?"
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I am SO deeply sorry for you and Skyler. I have no answers I am afraid but I will put him in my prayers - that i promise. Love Lorrayne --Previous Message-- : : Hi. I feel so bad for you and your son. I : do not have time now to write much but I : have posted here about my son before. You : should ask your doctor about rituximob. My : son was diagnosed with FSGS when he was 13 : months old and his condition got so bad so : fast that in a couple of months they wanted : to remove his kidneys. He did not respond : to anything and rituximob was given to him : as the last option before removing his : kidneys. He went into remission in about : seven weeks and has stayed in remission for : the past six months and is doing very well. : Hope this helps. If you have any questions : you can email me at gabe_mika@cogeco.ca : : : : --Previous Message-- : Hi All, I have been a member here years : agomostly just read the post. Somehow in : recent months ,I noticed I wasnt recieving : the post/emails. So I subbed back on. I : need to know if anyone has had this : experience w their child and what seems to : be the next step. Skyler was dx w MCNS in : 2000 after months of first prednisone, then : adding cytoxan w no success , and a biopsy : that seemed to only show MCNS in 2001. We : started cyclosporin w prednisone for 18 mos : then a biospy was done in 2003 after Skyler : seemed to stop responding , the biopsy : showed some fsgs and "withering" : of the tubulars?? also toxicity damage from : cyclosporin...... we did weekly labs for 18 : mos the levels seemed fine till we did the : biospy. In 2003 we started prograf w : prednisone; at times when he relapsed we : did the solumedrol pulses or methylpred, : then his b/p became an issue we added cozaar : and atenolol In 2003 after the biopsy the dx : was Idiopathic NS/FSGs......... Also it was : mentioned that it seemed a faint presence of : Mesangial Proliferative GN, but couldnt say : this definitely this was part of his dx. He : also was steroid dependant at this point. : Skyler seemed to respond well to prograf w : prednisone intially. 2 years ago Skyler : started relapsing frequently, we would : increase prograf do the Solumedrol and then : he respond for few weeks and relapse again : while still on high doses of pred or : solumedrol and prograf, we would increase : again , even added cellcept 2 different : times w same results. October 2006 we did : Nitrogen Mustard..... complete failure! : Skyler didnot respond at all. Skyler has : been in the hospital every 2-3 months the : past year w severe edema , b/p issues, too : low sodium/potassium levels and thru all : this the last year his protein has continued : to be +4 . In the past 7 months his : creatnine is 1.9 bun is 59 , he is still : currently at this level. Since Nov 07 : Skyler's mental state became a big issue( : this had never happened before, he always : was so upbeat, positive). In Sept07 : Skyler's granfather became suddenly ill and : in 6 wks passed away, also Skyler's father : Stephen was dx w cancer in 2003 and in Nov : 07 now is terminal Drs say he can pass away : anytime. I know all this has had a huge : impact mentally on Skyler along with the : worsening of his own condition. Skyler will : say "please all of you leave me alone : just let me die I am tired of being sick : " I never thought we would ever reach : this point with Skyler..... My heart feels : like its ripped in a million pieces. A few : days ago Skyler asked something he had : never asked or said before.. He wanted to : know why he got sick and wished he wasnt, : also said if you and the DRs leave me alone : I can go to a place where I will never be : sick again. : DRs have said in recent months they are : trying to maintain him by relieving the : edema and watching the b/p. We just came : back home from another hospital stay last : Sun. We have added Cellcept back on w/ the : prograf and Prednisone, we will wait 3-7 : weeks to see if there is any response, if : not then we are suppose to do another : biopsy. They did say they feel Skyler is : steroid resistant and most likely has the : mesangial proliferative Gn and they hope to : be able to give definite answers with the : next biopsy. We have talked alot about : dialysis in the last 1 yr, but last week : they did go into great detail and said they : felt this is where Skyler was heading. One : thing the dR said .........which blew my : mind as I had never heard this before, was : when they have exhausted all means of : treatment and throw in the towel so to speak : They could remove both Skylers kidneys and : start dialysis! HAs anyone ever heard or : experienced this before ... it really has me : worried and scared. : Skyler currently is on 60 mg prednisone : daily, 6 mg prograf bid, cellcept 750 mg : bid, zantac 75 mg bid,cozaar 50 mg in am, : atenolol 75 mg at pm, clonidine 0.1 mg at : pm, risperdal 25 mg bid, viactiv 500 mg : bid, centum 5 ml eod, HCTZ 25 mg bid, also : till Fri was on lasix 40 mg daily.... his : sodium/potassium levels both dropped so we : are holding lasix at this time. Has anyone : had response to these meds after no response : to same meds in previous use ?? I feel we : are grasping at straws. I am angry and : frustrated again , I havent felt this way in : years I actually told the DR last week : CAnt you all please fix this! just get him : better! Why isnt SKyler responding in the : last year and he is getting worse, he is so : miserable w the swelling and c/o of pain. I : just wish I could take it all away for : him....and I cant. : Sorry for the long post I am anxiously : awaiting any suggestions /response from : aanyone ,even Drs that may have : suggestions. TIA, Quenna mom to : Skyler,11yrs old dx Idiopathis NS/FSGS and : ??? Measangial Proliferative Gn : : :

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Message Thread: Skyler and whats next? - Sky'smom January 13, 2008, 2:52 pm Re: Skyler and whats next? - Mika January 14, 2008, 9:34 am Re: Skyler and whats next? - britfun67 January 22, 2008, 1:05 pm « Back to thread

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