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new Posted by krystalr on December 27, 2007, 6:45 pm 12.10.29.64 Unfortunate to have to join but very fortunate to have found such a wonderful place to probably find out more than what the doctors told me which is basicall nothing. SO this is my 2year old sons story so far ( it might get long as I am so lost as to what the future holds and have a doctor who doesn't want to tell me much) on the second of decemeber the whole family except myself had the severe stomach flu and dalton( ns) kept puking 2-4 times a day we didn't think anything of it cause he was still drinking just not keeping it all down and he has acid reflux so thought maybe we gave him milk to soon then on fri the 7th I noticed his legs were huge and tight hubby says give him some benadryl he probably got bit or something, sat it wasn't any better so we went to the ER by then his tummy was big did blood work and his sodium level was one point off from a seisure so we were admitted for further testing and did a xray and found his kidneys were "sleeping" is what they called it so later that night they started lasix and actually and fluid iv also because he was dehydrated dispite all the extra fluid. The next morning we were life flighted to childrens hospital in Omaha Nebraska were they continued him on iv fluid sunday night into monday we were told we'd see the kidney doctor by noon and at 4 when our son was huge everywhere we requested the doctor get there now, basically we got a new nurse that morning and she didn't realize he was a new patient and left us in a room all day and forgot about us and later basically admitted she hydrated him to fast we went about 3 or 4 days without being diagnosed and then finally realized after having 13 lbs of fluid that they needed to do something before we ended up with dialysis so they started the lasix back up and later started albumin went a few days like that with no change and some decent days and some horrible days where if he had anymore fluid in his face he wouldn't have been able to see. Then they put him on a limit of 30 oz of fluid a day and a no added salt diet and he finally started to lose a little bit for 2 days and then he had to be put on blood pressure medicine and the next day they sent us home on steriods, lasix and the blood pressure medicine, we have been home for 8 days and have not heard from or seeen a doctor and were told we didn't have to see our ped. for 1-2 weeks and don't have to go back to the kidney clinic for 4-6 weeks, but I called and made his appointment for tomorrow because since we have been home he has lost no weight and has about 8 lbs of fluid still on him and with being on the high blood pressure medicine and barely monitored on that I am kinda freaking out. I barely knew anything about whats to come until I found this website last night and stayed up til 1:30 am reading when I left the hospital they made it sound like once this episode is over he may have A relapse but didn't once make it sound like this is something we'd be dealing with for awhile. The kidney doctor was very hard to talk to and it was like pulling teeth trying to get info from her we'd ask a question and I swear she'd answer it with as least words as possible and give us no more info than she had to to make the answer sound right. I am just wondering if I should try to find a different doctor since it sounds like we will be dealing with this for awhile, should we really be waiting this long to be seen? when we were still in the hospital she made it sound like until he was better from this we'd be in contact with a nurse every morning so we could tell then his weight and they'd base the lasix dose on that each day and then when he was put on the blood pressure med she made it sound like we'd maybe have a home health nurse then the release papers came and the soonest we'd be seen or talk to a doctor would be in 1-2 weeks and thats just the pediatrician, she didn't tell us to call if certain signs appear or anything. I am so lost and so scared and so annoyed by this doctor but can I get a second opinion just because I don't like the doctor and the insurance cover it especially since I now realize it will just be a matter of time to see if the steriods work before anything else can be done but I just want a doctor that will listen and tell me all they can to inform us. Anyone here from south dakota, iowa or nebraska know a good doctor? Was anyone else released from the hospital when the child hadn't lost much fluid yet. Anyones kid have side affects to the blood pressure med. I am learning all these meds to treat this take a big toll on the body with the bone loss, chance of being diabetic, scary it would be a little easier if I only had him to give attention to and him to keep the germs off but I have a 1 year old and almost 4 year old that goes to preschool. Is there any questions I should be asking the doctor's? when will I have to start testing his urine cause they never mentioned that will it not be until he is in remission and then daily to know if he is having a relapse, does the parents who kids are on blood pressure med have a machine to check it at home, although if I had one at home I wouldn't know what anything ment, should I ask them what all the result from blood work should be so I know what the numbers mean, its just stuff like that why wouldn't they just tell me so I understand. Thanks for listening to my rambling story, any info would be greatly appreciated and thank you in advance. You can email me at krystalbohlken@yahoo.com if you'd like thank you Krystal  Post a Response

Re: new Posted by britfun67 on January 22, 2008, 12:59 pm, in reply to "new " 65.184.21.76 I am SOOOOOO sorry. What a horrid story. My daughter was diagnosed almost 1 yr ago (by me) after the pediatrition telling me it was allergies and we getting on the web. Anyway, we have been blessed with a wonderful Neph doctor. Molly rigth now seems to be on her 3rd relapse (with no signs of a cold or anything grrrrrr). this is so scary but it truly helps having others to talk to. this is not a common condition so friends etc cannot relate. thank god for this site. please feel free to contact me if you want to vent etc britfun67@aol.com. Love to you xxxxx --Previous Message-- : Unfortunate to have to join but very fortunate : to have found such a wonderful place to : probably find out more than what the doctors : told me which is basicall nothing. : SO this is my 2year old sons story so far ( : it might get long as I am so lost as to what : the future holds and have a doctor who : doesn't want to tell me much) on the second : of decemeber the whole family except myself : had the severe stomach flu and dalton( ns) : kept puking 2-4 times a day we didn't think : anything of it cause he was still drinking : just not keeping it all down and he has acid : reflux so thought maybe we gave him milk to : soon then on fri the 7th I noticed his legs : were huge and tight hubby says give him some : benadryl he probably got bit or something, : sat it wasn't any better so we went to the : ER by then his tummy was big did blood work : and his sodium level was one point off from : a seisure so we were admitted for further : testing and did a xray and found his kidneys : were "sleeping" is what they : called it so later that night they started : lasix and actually and fluid iv also because : he was dehydrated dispite all the extra : fluid. The next morning we were life : flighted to childrens hospital in Omaha : Nebraska were they continued him on iv fluid : sunday night into monday we were told we'd : see the kidney doctor by noon and at 4 when : our son was huge everywhere we requested the : doctor get there now, basically we got a new : nurse that morning and she didn't realize he : was a new patient and left us in a room all : day and forgot about us and later basically : admitted she hydrated him to fast we went : about 3 or 4 days without being diagnosed : and then finally realized after having 13 : lbs of fluid that they needed to do : something before we ended up with dialysis : so they started the lasix back up and later : started albumin went a few days like that : with no change and some decent days and some : horrible days where if he had anymore fluid : in his face he wouldn't have been able to : see. Then they put him on a limit of 30 oz : of fluid a day and a no added salt diet and : he finally started to lose a little bit for : 2 days and then he had to be put on blood : pressure medicine and the next day they sent : us home on steriods, lasix and the blood : pressure medicine, we have been home for 8 : days and have not heard from or seeen a : doctor and were told we didn't have to see : our ped. for 1-2 weeks and don't have to go : back to the kidney clinic for 4-6 weeks, but : I called and made his appointment for : tomorrow because since we have been home he : has lost no weight and has about 8 lbs of : fluid still on him and with being on the : high blood pressure medicine and barely : monitored on that I am kinda freaking out. I : barely knew anything about whats to come : until I found this website last night and : stayed up til 1:30 am reading when I left : the hospital they made it sound like once : this episode is over he may have A relapse : but didn't once make it sound like this is : something we'd be dealing with for awhile. : The kidney doctor was very hard to talk to : and it was like pulling teeth trying to get : info from her we'd ask a question and I : swear she'd answer it with as least words as : possible and give us no more info than she : had to to make the answer sound right. I am : just wondering if I should try to find a : different doctor since it sounds like we : will be dealing with this for awhile, should : we really be waiting this long to be seen? : when we were still in the hospital she made : it sound like until he was better from this : we'd be in contact with a nurse every : morning so we could tell then his weight and : they'd base the lasix dose on that each day : and then when he was put on the blood : pressure med she made it sound like we'd : maybe have a home health nurse then the : release papers came and the soonest we'd be : seen or talk to a doctor would be in 1-2 : weeks and thats just the pediatrician, she : didn't tell us to call if certain signs : appear or anything. I am so lost and so : scared and so annoyed by this doctor but can : I get a second opinion just because I don't : like the doctor and the insurance cover it : especially since I now realize it will just : be a matter of time to see if the steriods : work before anything else can be done but I : just want a doctor that will listen and tell : me all they can to inform us. Anyone here : from south dakota, iowa or nebraska know a : good doctor? Was anyone else released from : the hospital when the child hadn't lost much : fluid yet. Anyones kid have side affects to : the blood pressure med. I am learning all : these meds to treat this take a big toll on : the body with the bone loss, chance of being : diabetic, scary it would be a little easier : if I only had him to give attention to and : him to keep the germs off but I have a 1 : year old and almost 4 year old that goes to : preschool. Is there any questions I should : be asking the doctor's? when will I have to : start testing his urine cause they never : mentioned that will it not be until he is in : remission and then daily to know if he is : having a relapse, does the parents who kids : are on blood pressure med have a machine to : check it at home, although if I had one at : home I wouldn't know what anything ment, : should I ask them what all the result from : blood work should be so I know what the : numbers mean, its just stuff like that why : wouldn't they just tell me so I understand. : Thanks for listening to my rambling story, : any info would be greatly appreciated and : thank you in advance. You can email me at : krystalbohlken@yahoo.com if you'd like : thank you Krystal :  Post a Response

Re: new Posted by dscmvalentine on January 16, 2008, 4:42 pm, in reply to "new " 65.255.238.21 Hi There I'd also like to let you know you are not alone in this world of Nephrotic Syndrom. My son was diagnosed on Oct 2 of this year - he just tturned 2 in December. We have been on a crazy road since then. He finished his steriods on Dec 28. This past week he has started to show a rise in his protien levels again. We are now in the waitng period to see if he will need to go on the steriods again already. I wish you and your family the best of luck with your experience and hope you are able to find a good doctor. We are in Alberta, Canada and are dealing with the pediatric Neph Unit at the Stollery Children's Hospital and they seem to be great (although it is a 2 hour drive for us to go to the appointments). If you would like to get intouch my email address is valentine@harewaves.net Shannon  Post a Response

Re: new Posted by Mel on December 27, 2007, 10:39 pm, in reply to "new " 68.97.6.115 Hi there! I'm new too...just joined today. My son Connor, who is 4, was just diagnosed 2 weeks ago with Nephrotic Syndrome. You can read his story in the thread I posted about him. I just wanted to reply to your post because, like you, we are very new to this disease and are still searching for answers. From my personal experience, it sounds like it may be a good idea to get a second opinion, although I have no idea about the insurance coverage. When Connor was released from the hospital (less than 2 weeks ago) we were sent home with the Albustix, and told to test his urine every morning. They also gave us a blood-pressure cuff and taught my husband and I how to use it and told us to check his blood pressure twice a day. We were also told we wouldn't see his Neph for 4-6 weeks (he sees her on Jan 15) but they did call and schedule an appt with his pediatrician, just a week after he was released so the ped. could check up on him in the meantime and he has since seen his pediatrician again and we have another appt. scheduled next week with the ped. So they are really keeping a close eye on him until he goes back to the neph. As I said, this is just our own personal experience and I honestly have no idea what the "normal" thing to do is. I feel right there with you, being in the dark about so many things. The Neph never told us the side-effects to the pred and within a couple days of being home we started seeing changes in my sons behavior. We chalked it up to "Oh, he is just readjusting to being home after spending 3 days in the hospital" until I started doing some research on the internet and found out that his behavioral problems were actually a result of being on the Pred. I am also concerned now, after reading some things on here, about his bones and his growth rate. The Dr's make it seem like this is nothing serious and nothing a little prednisone won't fix, but I have since come to find out, after doing my own research, that there is so much more to it than that. All I can do is take it day by day and hope for the best. I hope you can do the same. Good luck and I hope to keep in touch...hopefully we can help each other find the answers we're looking for. Melinda melinda.lawson@cox.net Oklahoma --Previous Message-- : Unfortunate to have to join but very fortunate : to have found such a wonderful place to : probably find out more than what the doctors : told me which is basicall nothing. : SO this is my 2year old sons story so far ( : it might get long as I am so lost as to what : the future holds and have a doctor who : doesn't want to tell me much) on the second : of decemeber the whole family except myself : had the severe stomach flu and dalton( ns) : kept puking 2-4 times a day we didn't think : anything of it cause he was still drinking : just not keeping it all down and he has acid : reflux so thought maybe we gave him milk to : soon then on fri the 7th I noticed his legs : were huge and tight hubby says give him some : benadryl he probably got bit or something, : sat it wasn't any better so we went to the : ER by then his tummy was big did blood work : and his sodium level was one point off from : a seisure so we were admitted for further : testing and did a xray and found his kidneys : were "sleeping" is what they : called it so later that night they started : lasix and actually and fluid iv also because : he was dehydrated dispite all the extra : fluid. The next morning we were life : flighted to childrens hospital in Omaha : Nebraska were they continued him on iv fluid : sunday night into monday we were told we'd : see the kidney doctor by noon and at 4 when : our son was huge everywhere we requested the : doctor get there now, basically we got a new : nurse that morning and she didn't realize he : was a new patient and left us in a room all : day and forgot about us and later basically : admitted she hydrated him to fast we went : about 3 or 4 days without being diagnosed : and then finally realized after having 13 : lbs of fluid that they needed to do : something before we ended up with dialysis : so they started the lasix back up and later : started albumin went a few days like that : with no change and some decent days and some : horrible days where if he had anymore fluid : in his face he wouldn't have been able to : see. Then they put him on a limit of 30 oz : of fluid a day and a no added salt diet and : he finally started to lose a little bit for : 2 days and then he had to be put on blood : pressure medicine and the next day they sent : us home on steriods, lasix and the blood : pressure medicine, we have been home for 8 : days and have not heard from or seeen a : doctor and were told we didn't have to see : our ped. for 1-2 weeks and don't have to go : back to the kidney clinic for 4-6 weeks, but : I called and made his appointment for : tomorrow because since we have been home he : has lost no weight and has about 8 lbs of : fluid still on him and with being on the : high blood pressure medicine and barely : monitored on that I am kinda freaking out. I : barely knew anything about whats to come : until I found this website last night and : stayed up til 1:30 am reading when I left : the hospital they made it sound like once : this episode is over he may have A relapse : but didn't once make it sound like this is : something we'd be dealing with for awhile. : The kidney doctor was very hard to talk to : and it was like pulling teeth trying to get : info from her we'd ask a question and I : swear she'd answer it with as least words as : possible and give us no more info than she : had to to make the answer sound right. I am : just wondering if I should try to find a : different doctor since it sounds like we : will be dealing with this for awhile, should : we really be waiting this long to be seen? : when we were still in the hospital she made : it sound like until he was better from this : we'd be in contact with a nurse every : morning so we could tell then his weight and : they'd base the lasix dose on that each day : and then when he was put on the blood : pressure med she made it sound like we'd : maybe have a home health nurse then the : release papers came and the soonest we'd be : seen or talk to a doctor would be in 1-2 : weeks and thats just the pediatrician, she : didn't tell us to call if certain signs : appear or anything. I am so lost and so : scared and so annoyed by this doctor but can : I get a second opinion just because I don't : like the doctor and the insurance cover it : especially since I now realize it will just : be a matter of time to see if the steriods : work before anything else can be done but I : just want a doctor that will listen and tell : me all they can to inform us. Anyone here : from south dakota, iowa or nebraska know a : good doctor? Was anyone else released from : the hospital when the child hadn't lost much : fluid yet. Anyones kid have side affects to : the blood pressure med. I am learning all : these meds to treat this take a big toll on : the body with the bone loss, chance of being : diabetic, scary it would be a little easier : if I only had him to give attention to and : him to keep the germs off but I have a 1 : year old and almost 4 year old that goes to : preschool. Is there any questions I should : be asking the doctor's? when will I have to : start testing his urine cause they never : mentioned that will it not be until he is in : remission and then daily to know if he is : having a relapse, does the parents who kids : are on blood pressure med have a machine to : check it at home, although if I had one at : home I wouldn't know what anything ment, : should I ask them what all the result from : blood work should be so I know what the : numbers mean, its just stuff like that why : wouldn't they just tell me so I understand. : Thanks for listening to my rambling story, : any info would be greatly appreciated and : thank you in advance. You can email me at : krystalbohlken@yahoo.com if you'd like : thank you Krystal :  Post a Response

Re: new Posted by krystalr on January 1, 2008, 2:30 pm, in reply to "Re: new " 12.10.29.64 Hi mel, So is your son on high blood pressure medicine? I was surprised we didn't have to monitor my sons since he is, his blood pressure was high but I don't know how high cause its like they don't want to tell me what is normal when I asked they said well its still a little high but not as high as it was and I said well I have a blood pressure machine ( my aunts) I just have to go get a little kid cuff for it and the ped said did the neph tell you to watch it at home no but she said the only side effect to the med is it could go to low and he said he was on such a low dose I shouldn't have to worry about it but how do I know its keeping it low enough then, but since he wouldn't tell me what was normal and since I wouldn't really know how to take it I didn't buy a cuff. He he said the neph will probably have us testurine soon,well we don't see her for at least 4 more weeks so I am going to start I hope I can figure out how to use them,How is your son doing now? this fri we have to see if he has lost anymore weight since he hasn't since we've been home so we might have to do a higher dose of lasix. And he has been on steriods since the 13th of dec and they still haven't showen to work,they say they usually work within 10-14 days so I hope he isn't steriod resistant. OH yeah how did you first notice something was wrong, had he been sick or anything? --Previous Message-- : Hi there! I'm new too...just joined today. My : son Connor, who is 4, was just diagnosed 2 : weeks ago with Nephrotic Syndrome. You can : read his story in the thread I posted about : him. : : I just wanted to reply to your post because, : like you, we are very new to this disease : and are still searching for answers. : : From my personal experience, it sounds like : it may be a good idea to get a second : opinion, although I have no idea about the : insurance coverage. When Connor was released : from the hospital (less than 2 weeks ago) we : were sent home with the Albustix, and told : to test his urine every morning. They also : gave us a blood-pressure cuff and taught my : husband and I how to use it and told us to : check his blood pressure twice a day. We : were also told we wouldn't see his Neph for : 4-6 weeks (he sees her on Jan 15) but they : did call and schedule an appt with his : pediatrician, just a week after he was : released so the ped. could check up on him : in the meantime and he has since seen his : pediatrician again and we have another appt. : scheduled next week with the ped. So they : are really keeping a close eye on him until : he goes back to the neph. : : As I said, this is just our own personal : experience and I honestly have no idea what : the "normal" thing to do is. I : feel right there with you, being in the dark : about so many things. The Neph never told us : the side-effects to the pred and within a : couple days of being home we started seeing : changes in my sons behavior. We chalked it : up to "Oh, he is just readjusting to : being home after spending 3 days in the : hospital" until I started doing some : research on the internet and found out that : his behavioral problems were actually a : result of being on the Pred. I am also : concerned now, after reading some things on : here, about his bones and his growth rate. : The Dr's make it seem like this is nothing : serious and nothing a little prednisone : won't fix, but I have since come to find : out, after doing my own research, that there : is so much more to it than that. : : All I can do is take it day by day and hope : for the best. I hope you can do the same. : Good luck and I hope to keep in : touch...hopefully we can help each other : find the answers we're looking for. : : Melinda : melinda.lawson@cox.net : Oklahoma : : --Previous Message-- : Unfortunate to have to join but very : fortunate : to have found such a wonderful place to : probably find out more than what the doctors : told me which is basicall nothing. : SO this is my 2year old sons story so far ( : it might get long as I am so lost as to what : the future holds and have a doctor who : doesn't want to tell me much) on the second : of decemeber the whole family except myself : had the severe stomach flu and dalton( ns) : kept puking 2-4 times a day we didn't think : anything of it cause he was still drinking : just not keeping it all down and he has acid : reflux so thought maybe we gave him milk to : soon then on fri the 7th I noticed his legs : were huge and tight hubby says give him some : benadryl he probably got bit or something, : sat it wasn't any better so we went to the : ER by then his tummy was big did blood work : and his sodium level was one point off from : a seisure so we were admitted for further : testing and did a xray and found his kidneys : were "sleeping" is what they : called it so later that night they started : lasix and actually and fluid iv also because : he was dehydrated dispite all the extra : fluid. The next morning we were life : flighted to childrens hospital in Omaha : Nebraska were they continued him on iv fluid : sunday night into monday we were told we'd : see the kidney doctor by noon and at 4 when : our son was huge everywhere we requested the : doctor get there now, basically we got a new : nurse that morning and she didn't realize he : was a new patient and left us in a room all : day and forgot about us and later basically : admitted she hydrated him to fast we went : about 3 or 4 days without being diagnosed : and then finally realized after having 13 : lbs of fluid that they needed to do : something before we ended up with dialysis : so they started the lasix back up and later : started albumin went a few days like that : with no change and some decent days and some : horrible days where if he had anymore fluid : in his face he wouldn't have been able to : see. Then they put him on a limit of 30 oz : of fluid a day and a no added salt diet and : he finally started to lose a little bit for : 2 days and then he had to be put on blood : pressure medicine and the next day they sent : us home on steriods, lasix and the blood : pressure medicine, we have been home for 8 : days and have not heard from or seeen a : doctor and were told we didn't have to see : our ped. for 1-2 weeks and don't have to go : back to the kidney clinic for 4-6 weeks, but : I called and made his appointment for : tomorrow because since we have been home he : has lost no weight and has about 8 lbs of : fluid still on him and with being on the : high blood pressure medicine and barely : monitored on that I am kinda freaking out. I : barely knew anything about whats to come : until I found this website last night and : stayed up til 1:30 am reading when I left : the hospital they made it sound like once : this episode is over he may have A relapse : but didn't once make it sound like this is : something we'd be dealing with for awhile. : The kidney doctor was very hard to talk to : and it was like pulling teeth trying to get : info from her we'd ask a question and I : swear she'd answer it with as least words as : possible and give us no more info than she : had to to make the answer sound right. I am : just wondering if I should try to find a : different doctor since it sounds like we : will be dealing with this for awhile, should : we really be waiting this long to be seen? : when we were still in the hospital she made : it sound like until he was better from this : we'd be in contact with a nurse every : morning so we could tell then his weight and : they'd base the lasix dose on that each day : and then when he was put on the blood : pressure med she made it sound like we'd : maybe have a home health nurse then the : release papers came and the soonest we'd be : seen or talk to a doctor would be in 1-2 : weeks and thats just the pediatrician, she : didn't tell us to call if certain signs : appear or anything. I am so lost and so : scared and so annoyed by this doctor but can : I get a second opinion just because I don't : like the doctor and the insurance cover it : especially since I now realize it will just : be a matter of time to see if the steriods : work before anything else can be done but I : just want a doctor that will listen and tell : me all they can to inform us. Anyone here : from south dakota, iowa or nebraska know a : good doctor? Was anyone else released from : the hospital when the child hadn't lost much : fluid yet. Anyones kid have side affects to : the blood pressure med. I am learning all : these meds to treat this take a big toll on : the body with the bone loss, chance of being : diabetic, scary it would be a little easier : if I only had him to give attention to and : him to keep the germs off but I have a 1 : year old and almost 4 year old that goes to : preschool. Is there any questions I should : be asking the doctor's? when will I have to : start testing his urine cause they never : mentioned that will it not be until he is in : remission and then daily to know if he is : having a relapse, does the parents who kids : are on blood pressure med have a machine to : check it at home, although if I had one at : home I wouldn't know what anything ment, : should I ask them what all the result from : blood work should be so I know what the : numbers mean, its just stuff like that why : wouldn't they just tell me so I understand. : Thanks for listening to my rambling story, : any info would be greatly appreciated and : thank you in advance. You can email me at : krystalbohlken@yahoo.com if you'd like : thank you Krystal : : :  Post a Response

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