Confused, scared, puzzled. - Kidney Disorders Message Board

Ammy · 12-29-2005, 01:10 AM

Hi all. First time posting on this section of the boards.

I'm the mother of a 13 YO daughter. In August of last year (2004) she changed doctors and he ordered a complete workup of her, including bloodwork and UA. Bloodwork came back abnormal in some areas (glucose, triglycerides, protein in urine, etc.) and she was diagnosed with diabetes in September. Doctor kept a watch on her labs, and repeated them monthly.

She had a UA result of protein in the 700 mg/dl range. He ordered a 24 hour urine, which came back over 5,000. She had a kidney biopsy done in December of last year and the nephrologist said that the pathology report stated that changes in her liver were due to diabetes. (In the 3 months from diagnosis to biopsy??)

Well... here we are 1 year later. Daughter has been on Glucophage for the diabetes all this time. Bloodwork and labs done every 2 months, at least and sometimes more often. Latest labs had her UA protein in the urine at 300 mg/dl. Doctor ordered another 24 hour urine, which came back at over 12,000 this time. No, that's not a typo... 12 thousand. Normal range is <150.

All of her kidney function tests come back in the normal ranges. All of her liver function tests come back in the normal ranges. Her albumin levels are in the normal range. Her serum creatinine is in the normal range. However, she's still dumping massive amounts of protein into her urine and her liver is now enlarged to 2 1/2 times it's normal size. (The doctor does a "hands on" exam of her liver on every visit. To start with, he told me a normal liver is about 4 fingers wide. My daughters was 8. Now, it's up to about 12 fingers wide.) She's had CT's and US and it does show some fatty deposits in her liver and the enlargement.

She's seeing a new pediatric nephrologist on Friday, and I'm scared. This doctor works 2 days a week in the practice - Monday and Wednesday - and he's having her come in on his day off. He doesn't want to wait until next week to see her. Her PCP faxed over her latest bloodwork results and his nurse told me that if it weren't so late in the day when they got the fax and appointment request, he would have had her in there today. He'd see her tomorrow but he has surgeries scheduled.

Her PCP says that no matter what the pathology report from her previous biopsy said, he can not now, in good faith, believe that this is caused from her diabetes. He'd gone along with that diagnosis from the specialist and has been treating the diabetes portion, but with her liver getting larger and the protein getting even more... he no longer feels that diagnosis is correct. He told me he has patients who have been diabetic for 20 years and their 24 hour urine comes back in the 400-500 range. My daughter has only been diagnosed for a year, and hers is over 12,000.

Anyone have any idea what this could be? Normal liver function serum tests, normal kidney function serum tests, normal serum albumin results, elevated triglycerides, cholesterol and glucose levels, massive protein in urine and enlarged liver. Her clinical diagnosis from her PCP are Nephrotic Syndrome (which is very vague) and proteinuria (which is nothing more than protein in the urine).

I know I'll hopefully get some answers from the nephrologist Friday, but I'm still worried today and hoping someone can shed some light.

feelbad · 12-29-2005, 07:22 AM

If you don't get good answers from the neph(but you should find out something)please seek out a good ped GI doc.there are alot of different conditions/diseases that affect the kidneys and the liver at the same time.my son was Dxed with hepatic fibrosis after he vomited up blood one day9yes it WAS scarey as hell) but upon ultrasound,we discovered that what he actually had was polycystic kidney disease with congenital hepatic fibrosis.I and my husband also had to have ultrasounds as we were told that our son actually got this condition from one of us.it was me,and since then my sister was also found to have this as well.there are many different types of inherited conditions that you don't even know you have and some never even know til after an autopsy that they have had these conditions going on and they just never progressed tothe point where the damage was enough to actually show themselves.strange but true.i would advise you to obtain every lab and doc note,i mean every medical document(including just allthe basic doc clinic notes from all docs that she sees)and keep this stuff all in a file that you can take along with you to each and evbery appt with any doc,old and new,i was constantly being asked all of these questions about my sons labs and other things that the other docs said about something and just could not keep track of it all inside my head anymore.THAT is when I started gathering all of his records form everywhere that he had been seen and any labs done or other tests when we needed treatment in an ER.you can actually obtain lab results from any ER that same time you are seen,as the labs are all done very quickly and all they have to do is shoot you a copy of what they have.but you DO need to keep all of this info handy at all times.I keep it all in an expanding folder that comes to evry doc visit and also has been vital to us when he had to go suddenly to the hospital.all you have to do is grab that folder and go,it saves a heck of alot of time and the er docs will have that baseline set of labs and info at there finger tips ans this will also allow to see any immediate changes that may have occured since the last labs were done.no matter when they were done.

I truely hope that whatever is going on with your daughter is no way as severe as what my son had to deal with but just stay strong,and hang in there,whatever it is,you CAN and WILL handle it.trust me.just get all of the records that have been generated thus far and request any test results as soon as they are done so you have a full updated version of all the latest doc notes and labs and other tests.this also is just a big help when you see a new doc and someone forgot to actually fax over all those very important records they need to have for that appt?you can just reach into your handy little folder and tell them to make a copy of yours.never ever give away your own copies of anything as it can be a hassle to replace.just some helpful hints here.please let me know what you are able to actually find out at this neph appt,K? I am always here if you need me.good luck and i will pray for the best.marcia

darkwater · 12-30-2005, 02:14 PM

Perhaps the doctors should look in the direction of autoimmune diseases, if they have not already. Diseases like Lupus and a few others could possibly cause the extremely high protein loss in the urine and damage to the kidneys and liver. These disorders can be hard to diagnose, because their symptoms mimic those of many other disorders, plus there are a number of tests (positive ANA, C3 and C4 complement in the blood, rbc and wbc counts, urine tests, to name a few, plus the kidney biopsy) that must be read side-by-side to get a true idea if something in the autoimmune area could be happening to her. Good luck to you and your daughter.

Ammy · 01-01-2006, 02:20 PM

Her ANA was negative, although I have mentioned a possible autoimmune disorder to him. He said her ANA was negative and that he didnt think that was going on... and like I told him, her liver functions were also in the normal ranges yet it's big enough to eat for Thanksgiving dinner. I do know that an ANA can come back negative even when there IS something going on. I think I'm going to have to push him harder in that direction.

The nephrologist put her on Diovan to try and get her protein levels down some. She'd been on Altace before and didn't tolerate it well and he thinks that maybe it dropped her blood pressure too much... so he's trying this new one. We have to go back to him on the 11th. He did have her previous biopsy results and said the pathology did show the kidney changes were due to diabetes, but he's also baffled about that since she'd have had to have had diabetes since she was basically born for the extensive damage being shown. Never has she been diagnosed or has it even been hinted at about diabetes before last year.

I'm also going to talk to her PCP about getting in to see either a gastroenterologist or a hepatologist. Preferably, the hepatologist. She's been poked with needles for bloodwork so many times I lost count, had CT's, MRI's and US's, had to do so many 24 hour urine catches that she dreads seeing me walk in the door with that orange jug.... I'm tired of it. I'm tired of the "lets run this test and see" attitude I've been getting. Something is going on, and someone somewhere has to know what it is.