Our son was born 3 months premature, he was diagnosed with stage 4 bilateral kidney reflux when he was 2 months old, and the doctors had him taking antibiotics everyday to prevent an infection.Now he is 13 months old, and when he had his VCUG and ultrasound they were suprised and said the reflux was completly gone(which is pretty much unheard of in such an advanced state).So, we took him off the antibiotics.Less than a week later I had to take him back to his pediatrician because he had a fever, and they discovered that he had lost almost a pound in that time, and that there was protien in his urine.(which means his kidneys aren't working right)But the dr. told me to just give him tylenol for a few days and then if he still had a fever to start him on antibiotics.By the next day my sons temp., wich had been a steady 100.4 went up to 102.So I went ahead with the antibiotics, by the next day his fever was gone.He's been acting fine but he's still not eating or drinking as much as he was before, but his ped. dr. doesn't want to see him until the 4th.I think thats a long time to wait, especially if it is a problem caused by or with his kidneys.Has anyone else out there had a problem like this?I mean is protein in the urine something to do with the old reflux, or could the urologist been mistaken about the reflux being gone?
I don't know that much about kidney reflux in babies, but I agree with you. This seems like a long time to wait to see a general pediatrician.
I recommend insisting on a pediatric nephrology consult as soon as possible.
Good Luck!!
PLEASE take your son to see a pediatric nephrologist. There are some things that a regular MD or pediatrician can recognize but, only to the degree of symptoms. As in, the pediatrician knows that something isn't right with your sons kidney's because he has higher protein spillage, but he is not qualified to put a name to it if it is more than just an infection.
Kidney's are a specialized art. Please get your son to a nephrologist.
If your insurance won't cover it or the pediatrician is hesitant/reluctant to write a referral. Take your son to your nearest ER the next time he is symptomatic and/or you see the protein in his urine. At the ER, there will be a qualified Nephrologist on call.
I wish you the best of luck,
B.
They do need to monitor the protein levels in his urine. My daughter has similar issues and she is on medication to reduce the protein in her urine, because lond term the protein can damage the kidneys. My daughters kidneys are very bad as it is. As long as he is on the antibiotics he is fine. But on the 4th I would have them recheck his levels of protein and if it is still there he needs meds (enapril)You might even need a nephrologist(kidney dr) to fiqure out what is going on.Good luck!
M., mom to 3
I agree with Barbara. Both my children have this so I know what you're going through. It sounds like he got a kidney infection and the antibiotics treated it. That means his VCUG was incorrect. I wonder if the infection and inflamation during the test could have schewd the results? Also, a poorly done VCUG can cause an infection. I would find a nephrologist and investigate further.
I can't really add much. I just want to add my voice to the others that are encouraging you to go to a kidney specialist. A urologist is great when the problem is more of a bladder or ureter problem. The kidneys fall into another category. your son should be checked by a pediatric nephrologist to at least make sure nothing has been missed. The specialists are more up to date on the latest treaments etc. Good Luck and God Bless You
First, my best to you and hang in there! I have a boy who was born with a heart defect and I know how difficult it must be to have him sick and dealing with the medical personnel. I'm a nurse and it's even more difficult! I highly advise if you are not getting the answers you feel you need, find another doc. It certainly sounds like he needs to be seen by his urologist. If they have been following him then you shouldn't need a referral, but of course, check with your insurance company to verify. Parents have to be a little forceful and make sure they do what we want. We pay for it and believe me they are not Gods!! Keep in mind, too, they are only human and very busy....this means we have to be more alert to what we feel needs to be addressed more. I wish you the best and will be praying it is something simple.
I certainly can understand your concerns as I would be alarmed by the sudden increase in protein but I will say that when children run fevers their bodies utilize all the fluids they take in. It's the body's way of fighting off whatever illness is causing him to have fever. In turn, when they are sick they can lose their appetite. So the body taking extra fluids because of the fever compounded by the lack of appetite can cause him to be dehydrated a little and cause the urine to be more concentrated and show a higher level of protein. This doesn't necessarily mean that the urologist was wrong about the reflux. Your doctor is wanting to wait until the fourth so that your son's body has time to recooperate from the illness and he can get his appetite back and hopefully gain his weight back. If this doesn't happen by the 4th then they will probably send him back to the urologist for further consultation. I would keep a watch on him and let him eat or drink anything he wants and will until then. I hope all goes well.
Hi F..
My youngest dd (age 6 yo) has the kideny reflux as well and we didn't know it until she was 6 yo and she already lost most function in the left kidney. We had surgery this past December at Riley Children's Hosp about 2 hours north of our home in Sellersburg. We had a fantastic specialist that we just love. I don't know where you live but I would highly recommend him. Your son should not be spilling protein and I don't think they are taking this serious enough. I only say that because we had no idea how bad Elaina was until she had surgery. Nobody really took it serioulsy enough until we realized how badly damaged her left kidney was a she had some loss of her right kidney.
If you feel in your gutt that this needs to be taken more seriously, scream and raise the roof until somebody listens. You are his advocate and he can't tell them for himself. I believe you know what your doing and you love your son very much. They need to listen to you. Read, read, research, study anything you can get your hands on. I got on the internet and pounded the keys and read anything I could find so I could be better informed.
As for the antibiotics, the bad thing about them is it causes your own immune system to "take a hiatus" if you will. May I suggest a daily regimen of collidal silver which is a natural antibiotic and so much more. I believe after being on the antibiotic for so long it does affect their bodies. Elaina was on it as well, but I supplemented her with natural stuff in between doses. Contrary to what doctors will say, medicine has side effects. Period. Knowledge is power and don't let them treat you like you don't know anything. You are a intelligent women and can think for yourself.
God bless you. If you need anything at all, please do not hesitate to let me know. I will help anyway I can.
W. Morris
Sellersburg, IN
