[ KidComm Nephrotic Syndrome Parents Place ]

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Hi...Another Newbie Here Posted by Mel on December 27, 2007, 3:01 pm 68.97.6.115 Hello everyone. My name is Melinda and I am from Oklahoma. My 4-yr old son, Connor, was very recently diagnosed with Nephrotic Syndrome...only about 2 weeks ago. Over the past couple of months, I had had various people mention to me that they thought Connor's face looked swollen. I suppose my hubby and I didn't notice because we were with him all the time and couldn't see the changes in him so we brushed it off. Until about 2 and a half weeks ago...my sons had spent the night with my parents and when they brought them home the next day, Connor's face, stomach, legs and hands were obviously swollen so I took him to the Minor-Emergency Center in our town. The Dr. there said he was having an allergic reaction to something and to take him home and give him Benadryl. The next morning it appeared the swelling had gone down some until I went to give him a bath and saw that his genitals were 2 to 3 times there normal size. I took him to the ER where they performed several tests on him and ultimately concluded there was a major problem with his kidneys and sent him to see his regular pediatrician who was the first to bring up the Nephrotic Syndrome. When he told me all the symptoms, it all started to make sense...he had been urinating less, the puffiness, etc. My son was immediately admitted to Childrens Hospital in Oklahoma City where he saw a nephrologist and he was started on the prednisone, and furosemide(diuretics). His blood pressure was also very high so he was given blood pressure medication also. They also gave him albumen to bring those levels back up. He was in the hospital for 3 days...he lost 8 lbs just in those 3 days...all water weight. Since we've been home, we've been adjusting to our new lifestyle...all the medication, testing his urine daily and the low-sodium/low-sugar diet, which he's all handling like a trooper. He's been testing negative on the protein levels in his urine for the past few days, and were told just today we could take him off the diuretics and reduce the blood pressure med. We're still trying to get used to the side-effects of the pred. His behavior has changed significantly...he's certainly not the same happy-go-lucky boy he used to be and that saddens me alot. Not to mention the fact that the boy is going to eat us out of house and home with his increase in appetite! We go back to see the nephrologist Jan. 15. In the meantime he's been making regular trips to his pediatrician just to keep an eye on him. I've been trying to do lots of research on Neph. Syndrome since we found out and stumbled on this site today. Its so nice to know there are other people out there who know what we're going through and can share info with me, since I still feel so in the dark about what is going to happen with my little boy in the future. I keep wondering how this happened to him...my sweet, little boy...but I suppose you've all had those feelings too. Thank you for taking the time to read our story and I look forward to sharing more with you as we go on dealing with this issue. Mel USA  Post a Response

Re: Hi...Another Newbie Here Posted by britfun67 on January 22, 2008, 12:50 pm, in reply to "Hi...Another Newbie Here" 65.184.21.76 Hi Mel - I am so sorry. My 3 yr old daughter was diagnosed almost 1 yr ago. She has responded well to the Pred but has relapsed 3 times UGH! Breaks my heart. If you want to talk I am at britfun67@aol.com it truly helps to have someone who understands. god bless, Lorrayne xxx --Previous Message-- : Hello everyone. My name is Melinda and I am : from Oklahoma. My 4-yr old son, Connor, was : very recently diagnosed with Nephrotic : Syndrome...only about 2 weeks ago. : : Over the past couple of months, I had had : various people mention to me that they : thought Connor's face looked swollen. I : suppose my hubby and I didn't notice because : we were with him all the time and couldn't : see the changes in him so we brushed it off. : Until about 2 and a half weeks ago...my sons : had spent the night with my parents and when : they brought them home the next day, : Connor's face, stomach, legs and hands were : obviously swollen so I took him to the : Minor-Emergency Center in our town. The Dr. : there said he was having an allergic : reaction to something and to take him home : and give him Benadryl. : : The next morning it appeared the swelling : had gone down some until I went to give him : a bath and saw that his genitals were 2 to 3 : times there normal size. I took him to the : ER where they performed several tests on him : and ultimately concluded there was a major : problem with his kidneys and sent him to see : his regular pediatrician who was the first : to bring up the Nephrotic Syndrome. When he : told me all the symptoms, it all started to : make sense...he had been urinating less, the : puffiness, etc. : : My son was immediately admitted to Childrens : Hospital in Oklahoma City where he saw a : nephrologist and he was started on the : prednisone, and furosemide(diuretics). His : blood pressure was also very high so he was : given blood pressure medication also. They : also gave him albumen to bring those levels : back up. He was in the hospital for 3 : days...he lost 8 lbs just in those 3 : days...all water weight. : : Since we've been home, we've been adjusting : to our new lifestyle...all the medication, : testing his urine daily and the : low-sodium/low-sugar diet, which he's all : handling like a trooper. He's been testing : negative on the protein levels in his urine : for the past few days, and were told just : today we could take him off the diuretics : and reduce the blood pressure med. We're : still trying to get used to the side-effects : of the pred. His behavior has changed : significantly...he's certainly not the same : happy-go-lucky boy he used to be and that : saddens me alot. Not to mention the fact : that the boy is going to eat us out of house : and home with his increase in appetite! : : We go back to see the nephrologist Jan. 15. : In the meantime he's been making regular : trips to his pediatrician just to keep an : eye on him. : : I've been trying to do lots of research on : Neph. Syndrome since we found out and : stumbled on this site today. Its so nice to : know there are other people out there who : know what we're going through and can share : info with me, since I still feel so in the : dark about what is going to happen with my : little boy in the future. I keep wondering : how this happened to him...my sweet, little : boy...but I suppose you've all had those : feelings too. : : Thank you for taking the time to read our : story and I look forward to sharing more : with you as we go on dealing with this : issue. : : Mel : USA :  Post a Response

Re: Hi...Another Newbie Here Posted by dscmvalentine on January 16, 2008, 4:46 pm, in reply to "Hi...Another Newbie Here" 65.255.238.21 Hi Mel I've had a very similar situation too. My son began having a swollen face in Sept and they first thought it was just his teething. We went down a long and unusual road until they finally had to admit him and made a NS diagnosis Oct 2. My sons (he's a twin) turned 2 in Dec. I also posted on the other new person's post so you can read about my family on there as well. I am hoping your son and family are doing well and coping with this experience. It is so stressful not to know when a relapse will occur and what really causes the syndrome. I often feel like it is a waiting game and our hands are tied. Shannon valentine@harewaves.net  Post a Response

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