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2 weeks ago my son did a 24 hour urine test done checking for protein. He has been diagnosed with CVID and the doc's theory was that if he is dumping protein in his urine it could be further proof of CVID (low total IGG).

 

His protein came back high at 252mg. Anything >150 is considered high.

 

We just retested earlier this week and now the protein level is 837mg.

 

He has been on antiobiotics since Nov 2010 and IV antibiotics since Jan 2012. Would antibiotic use cause protein to leak into urine?

 

Worried about kidney function, which looks normal on his weekly blood work.

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2 weeks ago my son did a 24 hour urine test done checking for protein. He has been diagnosed with CVID and the doc's theory was that if he is dumping protein in his urine it could be further proof of CVID (low total IGG).

 

His protein came back high at 252mg. Anything >150 is considered high.

 

We just retested earlier this week and now the protein level is 837mg.

 

He has been on antiobiotics since Nov 2010 and IV antibiotics since Jan 2012. Would antibiotic use cause protein to leak into urine?

 

Worried about kidney function, which looks normal on his weekly blood work.

 

 

IgA nephropathy can cause large amounts of protein dump in the urine. This condition can rise as a result of strep infections. Strep antibodies more or less attack the kidneys. Ig A proteins normally live in the mucosa of the throat, mucous membranes. Immune response causes something to go array and the proteins go to live in the kidneys where they don't belong causing poor/ inefficient filtering of protein. Sorta like PANS/CANS/PANDAS where it crosses BBB and attacks the basal ganglia. Different organ somewhat same process. Makes the kidneys unable to filter large molecules (protein is a large particle) so kidneys dump large amount of protein. May often have macroscopic visible hematuria in the beginning which turns to microscopic blood you can't see as time goes on. Blood may return with fever or or illness (particularly with URI) My older Non- PANDAS son was followed by nephrology for 5 years for this condition. It can damage kidney function if left unchecked or severe. Luckily, my son's case was not severe and he has "recovered." No longer has to see Nephrology.

 

Blood work is seldom useful in this process except if doc wants to keep tabs on BUN/CREATININE, however, urine testing is done exclusively to monitor along with 24 hour urine collections. My son's doc NEVER did blood work in the 5 years he was followed- always urine.

 

HTH!

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Timely post. My neighbor's son has nephropathy, triggered by a strep infection several years ago. His is pretty serious and he's now homeschooled because he's on some serious immuno-suppressive drugs and any illness can have serious consequences. I believe the mom belongs to a an online forum. If you want me to find the name of the group or try to connect the two of you, let me know.

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911RN - OMG - the IgA nephropathy is dead-on. No surprise that if we are dealing with PANDAS (strep) we could be dealing with this too.

 

I wonder if this is a risk for all of our PANDAS kids. You all might want to ask your docs about doing urinalysis. My son's first urinalysis was just 3 weeks ago. Why isn't this routinely done?

 

We will see the family doctor tomorrow and will hopefully find a direction to take this.

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LLM- thanks - any information you can send me would be great.

 

I cannot believe we might be adding one more diagnosis to the mix...... where does this end? The good news is that my son has been receiving school instruction at home since May 2011 to reduce his exposure to strep and anything else that puts him at risk. It is one of the best decisions we have made with his care.

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911RN - OMG - the IgA nephropathy is dead-on. No surprise that if we are dealing with PANDAS (strep) we could be dealing with this too.

 

I wonder if this is a risk for all of our PANDAS kids. You all might want to ask your docs about doing urinalysis. My son's first urinalysis was just 3 weeks ago. Why isn't this routinely done?

 

We will see the family doctor tomorrow and will hopefully find a direction to take this.

 

Yes, I would say that all PANDAS kids are at risk. Why is it not routinely tested- I have no idea?? I can tell you I know more about this process that most Internists, ER docs and Peds do. I had to school myself. My children love to challenge Mom (the nurse) and not get any run of the mill diseases. Boy, I could sink my teeth into something normal like asthma etc:) ;) Something, I might actually know about- off the top of my head! Nah, they always had to get something that nobody had ever heard of that required a specialist and google search. :lol: I would advise going to your family doctor then get referral to Pediatric Nephrology NOT Urology ASAP.Many Nephrologist will not accept appt until after some 24 hour urine collections. US of the kidneys etc. which Peds/family doc may have to order. Nephrology will want their own baseline rule out testing before accepting for appt.

 

I have a theory that we had a severe Strep strain in our home that effected both of my children the year my older one was 7 and the younger one was 4. I remember the Strep episode- my older son got it- July 4th week. Bad case, fever, Strep rash etc. My younger son was never sick, no symptoms (that I knew of?) My boys are now 15 and 12. My older one had response that effected his kidneys- thus, IgA nephropathy. He was followed for 5 years, as I said. He is Neuro-typcial and recovered from his IgA nephropathy.It never really goes away and can come back to haunt you in latter years- must follow with some regularity....he may need BP meds in future to protect kidneys- use ACE inhibitors. However, he no longer has to be followed by Nephrology...his Peds can do random urine checks for protein. As I said, luckily his case was not severe and he has done well but not all kids are so fortunate.

 

Interestingly, we had a very smart female Nephrologist that treated him for "Suspected IgA Nephropathy"--the only way to "prove" disease is by kidney biopsy and due to his case not being severe- she did not want to put him through that. Even if she "proved it"- there would be no treatment (at his level) thus she chose not to prove anything and just monitor. She coded his visits as proteinuria and hematuria.

 

The reason she did not want to prove his diagnosis was because she did not want to "label" him with a kidney disease. This was prior to Obama changes in insurance laws re: pre-existing conditions etc. She said, at that time, that if he was labeled with this then he would likely never qualify for insurance (life or health) separate from me or with any policy that looked at pre existing conditions. The other thing to consider was he would be exempted from any military service. Branches of government will not take recruits with this disease. He was 7 at the time- who knew, at that time, what his future goals and life desires might be?? We didn't biospy since she said even if it was positive- she wouldn't treat or do anything different.

 

Just giving you some food for thought in case his case is not severe. Be careful in thinking you must "prove" this disease if there will be not treatment even if positive.

 

My younger one had subsequent, slow, progressive neurological decline (suspected PANDAS child and MORE!!)after meeting or exceeding all developmental milestones when he on a normal developmental path from birth to age 4. He was on nobody's radar then within 2 years- was on everyone's radar. Hhhhhmmmm....think that same summer the Strep got his brain. Can I prove it- NO! But, too many of the pieces fit that link my children. Different diseases, same infectious organism (Strep), different organ response. Each had different flawed immune response. One got the kidneys, one got the brain. Can't help but think that age played a factor. Neurological maturity, BBB, pathways in the older one somewhat "protected" him. Looking back- now, that I know about PANDAS (did NOT then)- he had PANDAS type behaviors that were "sudden onset" at the same time as his IgA Nephropathy was diagnosed. However, with lengthy antibiotic treatment, at that time, for severe sinusitis- he recovered. This was just coincidental treatment by Peds and Allergist while he was going through all the other stuff with kidneys.

 

He had irrational fears of abandonment, refused to participate in baseball camp which he had done the year before?, severe separation anxiety in kid that had never had it even when it was normal to have it like with 18 month olds, preschool etc. OCD behaviors, decline in Math and Writing skills, school phobia etc. He had been in pre school 2 years, kindergarten and 1st grade with no issues, AT ALL! Then in second grade- we are having to push him onto the bus and through the classroom door. It was weird and odd. We were baffled with no clue as to why. We thought it was just a stage and he just got better (likely from prolonged antibiotics although we didn't know this was the reason at the time). Never thought anything more about it until younger son started going through similar behaviors (MANY years later and we discovered PANDAS).

 

I could have 2 PANDAS, atypical neurological children--- instead of 1?? Luckily, sequence of events and treatments early on in his disease process allowed my older one to recover. Without even knowing what the source, cause and effect of what was going on at the time. Dumb luck on our part. My younger one is improving but still a mess. Not NT.

 

I likely would have NEVER picked up on my older son's IgA Nephropathy had it not been for the typical, little boys' habit of dribbling on the toilet seat (not lifting lid) when urinating AND a nurses' eye. He never really had any symptoms! He was in the shower and had peed prior to getting in- I was bringing him a towel and noted "bloody urine" dribble spots on the toilet seat. He was 7- Mom didn't watch him pee or help him shower anymore! I had him pee into a clear glass the next time he urinated and it was hematuria- bloody urine. That began our adventure into IgA Nephropathy.

 

Anyway, that's our story. Hope you can get some answers from your family doc!

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Thanks again 911RN - we went to family doc yesterday. He brought up IgA nephropathy before I even said anything. He already had written the referral for a ped nephrologist. My son will have an renal ultrasound today and see the specialist next week.

 

He thinks it might be one more piece of the puzzle with all of the immune dysfunction.

 

We were denied yesterday for our 3rd appeal for IVIG (for CVID). I guess its a blessing in disguise that we haven't done IVIG yet now that we know there are kidney issues. I'm trying to stay positive...........

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  • 2 weeks later...

jts -

Insurance company thinks my son doesn't meet their criteria for CVID, that's why they keep denying IVIG.

 

Update on peds nephrologist visit --

 

It was a nightmare. We were scheduled to see one doc and waited 2.5 hrs so the head of the dept. saw my son decided to take the case. She was the most arrogant doc I have ever met and I've met many. She said that "all teenagers have protein in their urine." She refused to look at the big picture and consider all of other immune issues. She took my son's blood pressure and was giving him very specific instructions on where to rest his hands and feet while sitting in a chair. He was trying to make conversation with her and told her that he has his blood pressure checked weekly by our home health nurse. The doctor said "I guarantee you have NEVER had your blood pressure taken properly." Really? You mean to tell me that no nurse or doctor I have ever encountered knows how to take blood pressure properly???

 

I complained to the staff about the doctor's behavior and they encouraged me to report it to the medical director. They did not seem surprised.

 

When the message that I was upset about the visit got back to the doctor we were scheduled to see, the doctor herself called me and fit my son into her schedule for a visit in October.

 

Do doctors take Arrogance 101 in med school?

 

Bottom line is that I still have no answers about kidney function.

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  • 2 years later...

Ok, I know this is an old post but I am sorta freaking out right now. My son was diagnosed in 2012 with pandas and demonstrated tics and anxiety,cod and all the other crap that goes along with it. He has been on long term augmentin and is doing much much better now. He just turned 15. I have stopped his antibiotics several times but have always needed to go back to them when symptoms returned. We are trying to wean him off again now that it is summer. He looks so much better now than he ever has so we are keeping our fingers crossed on that.

 

Here is why I am freaking out now. Back about three or four months after the pandas diagnosis I took him to a urologist because he was complaining about once a week he got sharp pains in his side immediately after urinating. It wasn't every time he went and it wasn't consistent. It switched from left to right side as well. I couldn't help but think it was somehow connected to pandas. When we went to urologist the urine was clear and the kidney ultrasound looked normal. The urologist said probably spasms. We started on long term antibiotics for pandas and he didn't complain anymore. Well now it's three years later. This past Christmas he said his urine looked bubbly. I took him in to urgent care and they said he had slight urinary tract infection. I asked about protein levels in urine and she just said it was trace amounts and nothing out of the ordinary. So we changed abx for 10 days to treat uti. Well now I still see the bubbles. I asked him to show me after he went to the bathroom several times I have noticed bubbles. He said they are probably just from standing up and going but the bubbles seem to take a long time to go away. The more I read about glumerlonephritis and its relationship to strep and autoimmune disorders the more scared I get. I haven't taken him back to the clinic but I did order the urine protein test strips online and as soon as they get here I am going to test several times myself.

 

My question for any of you is about any relationship between your pandas kids and protein in urine. Do antibiotics help or hurt this? I know antibiotics can have an anti inflammatory effect so would they have helped all these years. Any input about this would be appreciated.

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We have several markers out of whack in relation to kidneys, so I am glad you bumped this. Her IgA is low, she has protein and blood in the urine virtually every test, her Creatine and/or bun are sometimes high and her lactic acid is very high.

 

 

More research, both "yea" sarcastically, and "yea" realistically if this is another piece to our puzzle we can resolve.

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mayzoo, does not any MD question these lab and.urine tests in your child?

 

No. Her immuno has always replied he is not worried about kidney function even though I am. I am the one who does the reagent strip tests (but have given him the results), so I will log several of those, research more and likely make an appt with a nephrologist.

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He just turned 15.

I asked him to show me after he went to the bathroom several times I have noticed bubbles. He said they are probably just from standing up and going but the bubbles seem to take a long time to go away.

 

Foamy urine in males can also be associated with the presence of semen in the urine. Your son is getting to be the age where this is a possibility. Especially in the mornings.

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