Blood in urine

[Rain]

Hello -

 

First, thank you all for the support and guidance your dialogues have given me over the last several months. I am a frequent lurker - infrequent poster - but I follow you all and pray for you, and for other lurkers like me who are going through this ordeal.

 

 

Our story: our son started exhibiting OCD symptoms last fall (at age 10). After several months of unsuccessful CBT - the psychiatrist insisted on a strep test - even though our son showed no symptoms of classic strep. The rapid culture was positive, and his ASO titers elevated (April 2011). Long story short, our DS was eventually rejected from the NIMH IVIG study, but those (amazing) experts recommended that he see Dr. K. Dr. K confirmed PANDAS and recommended IVIG. Our pediatrician (though he initially called PANDAS a "controversial diagnosis") totally came around to our side, and ordered IVIG based on the NIMH's (and loosely on Dr. K's) protocol. We got the IVIG locally at the children's hospital here in Madison, WI on 8/17/2011 and 8/18/2011.

 

Since IVIG our DS has been on a prophylactic antibiotic - (pen VK at 250 BID). Today he had blood in his urine. [He also had diarrhea today - but he has had that on and off for several weeks - and under our Dr.'s guidance, we are experimenting with foods and probiotics in the hopes of controlling that.] Any thoughts about the blood?

 

He had blood in his urine once before. In May (shortly after the PANDAS revelation) he was on 30 days of augmentin. Right after he stopped the 30 day course, he had blood in the urine. At that time we ran every test we could think of, including a kidney ultrasound. The blood disappeared within a couple days, and we assumed it was some sort of minor trauma.

 

By the way - post IVIG, we have certainly seen some improvement! Not yet 100%, but we are optimistic. I hope we are not on the verge of a setback.

 

Thanks so much.

[911RN]

Hello -

 

First, thank you all for the support and guidance your dialogues have given me over the last several months. I am a frequent lurker - infrequent poster - but I follow you all and pray for you, and for other lurkers like me who are going through this ordeal.

 

 

Our story: our son started exhibiting OCD symptoms last fall (at age 10). After several months of unsuccessful CBT - the psychiatrist insisted on a strep test - even though our son showed no symptoms of classic strep. The rapid culture was positive, and his ASO titers elevated (April 2011). Long story short, our DS was eventually rejected from the NIMH IVIG study, but those (amazing) experts recommended that he see Dr. K. Dr. K confirmed PANDAS and recommended IVIG. Our pediatrician (though he initially called PANDAS a "controversial diagnosis") totally came around to our side, and ordered IVIG based on the NIMH's (and loosely on Dr. K's) protocol. We got the IVIG locally at the children's hospital here in Madison, WI on 8/17/2011 and 8/18/2011.

 

Since IVIG our DS has been on a prophylactic antibiotic - (pen VK at 250 BID). Today he had blood in his urine. [He also had diarrhea today - but he has had that on and off for several weeks - and under our Dr.'s guidance, we are experimenting with foods and probiotics in the hopes of controlling that.] Any thoughts about the blood?

 

He had blood in his urine once before. In May (shortly after the PANDAS revelation) he was on 30 days of augmentin. Right after he stopped the 30 day course, he had blood in the urine. At that time we ran every test we could think of, including a kidney ultrasound. The blood disappeared within a couple days, and we assumed it was some sort of minor trauma.

 

By the way - post IVIG, we have certainly seen some improvement! Not yet 100%, but we are optimistic. I hope we are not on the verge of a setback.

 

Thanks so much.

 

This should be investigated by Pediatric Nephrologist ASAP. My older son had IgA Nephropathy which can cause intermittent blood in urine to the point of appearing like cola in the presense of fever, illness, low hydration status etc. His disease likely occurred following unteated, asymptomatic Strep. Can also have Post Glomerulonenephritis (AGN) which is caused by immunological response to Strep antigens which deposits in the basement membranes of the kidney. Causes decreased flitration, fluid retention and inflammation. One of the classic signs is blood in the urine with IgA nephropathy or AGN.

 

With positive history of Strep in a child that had no symptoms...both of these diseases should be definitely ruled out or ruled in. My son never had any signs of strep either-it did not attack his throat in the normal fashion- it attacked his kidneys. Just as untreated strep can cause Rheumatic fever leading to heart valve disease- it can attack the kidneys causing kidney disease. Most nephrologist will do want to do 24 hour urines for protein and other factors. My son was followed from age 6 to age 12 by Nephrologist and thankfully, I can report he has had no long terms issues or negative outcome.

 

I do not want to scare you but blood in urine (especially in a child) should always be investigated to a complete answer as to reason why. Ultrasounds are usually normal so I would take no comfort in that finding. There is also a thing called Benign Familial Hematuria, however, if nobody else in the family has ever had blood in urine- I would not be too suspiciuos for that. With your son's Strep history- I would want IgA Nephropathy, AGN investigated.

 

Glad you have made improvemsnts with IVIG. Wishing you best with hematuria (blood in urine). Take care.

[momcap]

Thanks for this great info 911RN! My DS8 also had blood in his urine, negative for UTI and a normal ultrasound. Now if it happens again I know what to ask for. He also has chronically elevated ASO and frequently had asymptomatic strep.

[BoyIowa]

Hello -

 

First, thank you all for the support and guidance your dialogues have given me over the last several months. I am a frequent lurker - infrequent poster - but I follow you all and pray for you, and for other lurkers like me who are going through this ordeal.

 

 

Our story: our son started exhibiting OCD symptoms last fall (at age 10). After several months of unsuccessful CBT - the psychiatrist insisted on a strep test - even though our son showed no symptoms of classic strep. The rapid culture was positive, and his ASO titers elevated (April 2011). Long story short, our DS was eventually rejected from the NIMH IVIG study, but those (amazing) experts recommended that he see Dr. K. Dr. K confirmed PANDAS and recommended IVIG. Our pediatrician (though he initially called PANDAS a "controversial diagnosis") totally came around to our side, and ordered IVIG based on the NIMH's (and loosely on Dr. K's) protocol. We got the IVIG locally at the children's hospital here in Madison, WI on 8/17/2011 and 8/18/2011.

 

Since IVIG our DS has been on a prophylactic antibiotic - (pen VK at 250 BID). Today he had blood in his urine. [He also had diarrhea today - but he has had that on and off for several weeks - and under our Dr.'s guidance, we are experimenting with foods and probiotics in the hopes of controlling that.] Any thoughts about the blood?

 

He had blood in his urine once before. In May (shortly after the PANDAS revelation) he was on 30 days of augmentin. Right after he stopped the 30 day course, he had blood in the urine. At that time we ran every test we could think of, including a kidney ultrasound. The blood disappeared within a couple days, and we assumed it was some sort of minor trauma.

 

By the way - post IVIG, we have certainly seen some improvement! Not yet 100%, but we are optimistic. I hope we are not on the verge of a setback.

 

Thanks so much.

 

Not sure if I am doing this right; first time on here. My son was recently diagnosed with PANDAS and Lymes disease. He has had symptoms for over a year. Like you, we have been rejected for studies and recommended for IVIg. We went to see Dr. K in Chicago and are on antibiotics from a Lyme literate doctor in Iowa (Dr. P). Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol". Do you know if Children's in Madison knows Dr. K's protocol? We know that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home. My son has been to Milwaukee Children's hospital in the past.

 

Thank you for any help

[911RN]

Thanks for this great info 911RN! My DS8 also had blood in his urine, negative for UTI and a normal ultrasound. Now if it happens again I know what to ask for. He also has chronically elevated ASO and frequently had asymptomatic strep.

 

Infection is not usually a concern- will be negative for UTI. Ultrasounds will be normal.High protein is the concern. Protein is a large molecule and difficult for kidneys to process and pass through urine. Clogs up the system in the glomeruli (for lack of a better term) then makes the membrane more permeable to leaking blood- thus, blood in the urine. To have visible blood is concerning on a regular basis. Most often, have frank, obvious hematuria on 1st episode then blood becomes microscopic on subsequent occasions. Present by testing but not visible to the naked eye.

 

Kids with IgA nephropathy will often visible blood with any type of infection/illness- fever, low fluid intake, dehydration etc. Good to keep these kids well hydrated with illness. Keep fevers down. PUSH fluids- no colas. Nephrologist told my son he could drink as much of anything he could see through. Sprite is OK- Pepsi is not. Course, water is ideal. We are sweet tea drinkers- you can see through that if you squint real hard, right?!

 

Strep antigens can definitely have an impact on the kidneys causing blood in urine.

Edited October 14, 2011 by 911RN