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Posted by Mel on December 27, 2007, 10:39 pm, in reply to "new "
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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 :

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Message Thread: new - krystalr December 27, 2007, 6:45 pm Re: new - britfun67 January 22, 2008, 12:59 pm Re: new - dscmvalentine January 16, 2008, 4:42 pm Re: new - Mel December 27, 2007, 10:39 pm Re: new - krystalr January 1, 2008, 2:30 pm « Back to thread

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