Hi, I’m hoping someone might be able to help me. In February, my son had a urinary tract infection, and when he went to his family doctor, he did a dip-stick test that should the presence of protein. On his follow up a month later, they did another one which also showed protein, so we were referred to a nephrologist. We really thought this was nothing more than a ‘better safe than sorry’ situation, but on our first visit, the nephrologists told us that our son likely had IgA Nephropathy. To be honest, he terrified us. Our son was to take a 24hr urine and come back. Well, the test didn’t go well. Here are his numbers:
Electrophoresis was normal and so was immunofixation.
He gave us the results on our second visit and told us he needed a biopsy asap. He hasn’t had any other tests besides this one 24hr. urine and the dip-stick tests. I know that he has something wrong, and he has had repeated illnesses since he was about 8, but we are really afraid about him having a biopsy, because he does get infections so easily. Here are my main issues with the Dr., the test, and the upcoming biopsy:
1. He had bronchitis and a sinus (infection?) at the time of the test – couldn’t the numbers be higher than normal because of this? (The Dr. said it didn’t) 2. I asked whether his repeated bouts with bronchitis, pneumonia, etc., were connected or had any thing to do with the kidney issue, and he said no. 3. I read that he should be completely free of infection and not taking any meds for two weeks before the biopsy, but he has bronchitis, and he is taking meds for that. 4. When I asked if there was anything we could be doing now, diet, rest, anything, he said no, he could eat or drink whatever he wanted.
Our son is otherwise very healthy. Perfect blood pressure, normal weight, etc. He just has these bouts of illnesses once or twice a year. We had only two visits, and we feel like we’ve been blindsided – he left us confused and terrified, like this is a death sentence. We haven’t slept, we haven’t eaten and all our energy is used trying to look like everything’s fine in front of our son. We are trying to get a referral for a second opinion.
If any of you have any insight, or maybe have IgA, it would be so greatly appreciated. Some hope would be really nice right now. We feel so helpless.
Thank you for listening and sorry this is so long.
I am so sorry to hear of your problems, particularly in one so young. I suffer from protein-urea but have only skirted the nephrotic range (over 3grams protein loss daily) once when I was just under 3 grams in 24 hrs. I had a kidney biopsy , it is not a pleasant procedure but it is essential to get a definite dx. I was originally dx with mcd which is thinning of the kidney filters. It was later re-assessed as fsgs which is scarring of the filters. I was put on a very high dose of prednisone for the mcd when it did not work they changed the dx. It is possible that some of the meds your son has been on at some time have caused the problem. If the problem is something like minimal change disease prednisone is considered a good chance of a cure in younger people. It isn't a pleasant drug but the side effects do reverse after you come of it. Once again I am sorry your family has to go through this and you have my best wishes that your sons problems have a simple and permanent solution. Ron.
I'm sorry you're having so much trouble right now. It must be a difficult time for you right now.
First off, how old is your son?
IgA nephropathy is the most common cause of microscopic blood in the urine in N. America. No one knows what causes it. Sometimes you see IgA deposition in the kidney in the presence of certain diseases (such as cystic fibrosis, celiac disease or ankylosing spondylitis), but in most cases the IgA deposition has no preceding cause. The majority of IgA nephropathy ends up being JUST microscopic hematuria (i.e. microscopic blood in the urine) with no other problems. There are also people who end up having very very slow renal damage over the course of their lives that doesn't really amount to much. Unfortunately, there is a small group of people who develop clinically apparent kidney impairment which can progress to end stage renal disease.
The thing is, in any cases of IgA nephropathy, there is nothing the person has done or can do that had/has any influence on the process.
I'm not completely sure of the units you've included with those kidney numbers, but if it is in milligrams, the 24-hr protein level is pretty high in what we call the NEPHROTIC range. Normally, people excrete less than 30mg of protein in the urine in a 24 hour period. Overt proteinuria is considered >150mg and nephrotic range is >3.5 GRAMS. It looks like your son is putting out around 4g, though I may be wrong if the units are off.
Also, is that 2.9 his creatinine serum value or the total amount of creatinine in the 24hr collection?
You mention your son has bronchitis--does he get that a lot? If he is young, and he's been having repeated pulmonary infections, has he been seen by a respirologist? Cystic fibrosis and Kartagener's syndrome (as well as some primary immune deficiencies) can present with repeated pulmonary and sinus infections.
In any case: yes acute illness with a fever can slightly change a 24 hour urine result; however, one will NEVER put out >3.5g of protein from a fever alone--there has to be some kind of underlying kidney pathology.
The repeated bronchitis can be associated with IgA nephropathy yes, but only if it is because of something like cystic fibrosis. Sometimes an acute bronchitis can be associated with a simultaneous kidney inflammation which looks like IgA nephropathy; however, this form generally will NOT have nephrotic range proteinuria (i.e. >3.5g) so your son does not fit in to this category.
Unless your son has CF (as I mentioned above) I wonder why the doctors ar treating him with antibiotics for bronchitis--there is no indication for antibiotics in acute bronchitis because 90% of them are viral. CHRONIC bronchitis is a bit of a different story. What the nephrologists mean by "infection free" is more free of infection in the urinary tract. If someone has active pneumonia and is really sick, that also would be a reason to avoid the biopsy. A mild to moderate bronchitis usually is not a contraindication.
As long as your son is not retaining fluid or having issues with his potassium level going high, the doctors will usually put no restrictions on the diet.
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