Hemolytic-uremic syndrome (HUS) Support Group

Hemolytic-uremic syndrome (or haemolytic-uraemic syndrome, abbreviated HUS) is a disease characterised by microangiopathic hemolytic anemia, acute renal failure and a low platelet count (thrombocytopenia). The classic childhood case of HUS occurs after bloody diarrhea caused by E. coli O157:H7, a strain of E. coli that expresses verotoxin (also called Shiga toxin). The...

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Infectious Diseases
/ Hemolytic-uremic syndrome (HUS) Support Group

Daughter had HUS

TheMer
TheMer

My daughter had HUS 4 years ago and had kidney failure and on dialysis for over a month. Her kidneys recovered but ever since we got home from the hospital she has wet the bed. She was 6 then, now 10 and was potty trained before age 3. As a result of the HUS she is type 1 diabetic, has chronic pancreatitis and had her gallbladder removed. Her endocrinologist, GI specialist, nephrologist or urologist can't explain why. They all tell me to wake her up in the middle of the night to use the bathroom. This isn't normal!!!!

MOMMAF
MOMMAF
My son is still in diapers and while in the hospital, when he wet, the diaper was completely overwhelmingly full. It is still happening, I asked the Nephrologist about this and he said it has nothing to do with the kidney's, but may be more that he is ready for potty training. I don't necessarily believe him, I think there is something else to it, but not sure what. (The body is so complex!!)
TheMer
TheMer
Is your son diabetic? The HUS damaged her pancreas and caused her to be type 1 diabetic. The nephrologist tells me it's not related and to talk to the endocrinologist. The endocrinologist tells me her sugar is good and shouldn't cause her to wet the bed and tells me to see an urologist. The urologist tells me it's the diabetes. I can't get a straight answer from anyone. She was potty trained at 2. Still wetting the bed for the past 4 years since the HUS.
MOMMAF
MOMMAF
He is not officially diabetic long term yet. He is still having diabetic issues, but not on any insulin or basaglar or anything for it at this point. He will still have highs if we let him eat more than about 40 carbs. at a time.

How frustrating to not get a straight answer from anyone! I think there is something to it coming from the HUS or the other effects it has had.
TheMer
TheMer
My sister is a nurse and she said she's read thathe there is a connection between the kidney failure and bed wetting. It's such a large amount of urine. I will have her go to the restroom 2 times before bed and she will still leak while wearing a "goodnities" pull up. I wash her sheets just about every other day for the past 4 years.

I pray your son recovers and the diabetes isn't long term. It's a shock of a lifestyle change. Please stay in contact. I'd like to hear how he does in the future. I haven't found anyone to relate with HUS.♡