[ Post a Response | KidComm Nephrotic Syndrome Parents Place ]

*NOTE* You must register to use this board. All posts will be reviewed before being posted. This is done for your protection and to stop spammers with nothing better to do with their time. Your post will usually show up within a few hours.

Skyler and whats next?

Posted by Sky'smom on January 13, 2008, 2:52 pm
12.191.215.164

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

---

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

---

Post a Response

Please consider supporting our mission