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

Son had HUS

MOMMAF
MOMMAF

Hi!  My son came home from the hospital at the end of February from having HUS.  He was in the hospital 6 weeks.  He is doing so much better now!  I am wondering if anyone's child  had to go on insulin for a while and then the pancreas healed itself completely?  For the last week we haven't given him any insulin, but he will still get high blood glucose readings if we let him eat too many carbs. I know we will just have to wait it out and see what happens, but would love to know others experiences.  (We are being followed closely by Endocrine).  

TheMer
TheMer
Just saw your post after I responded to your other comment. Emma was in the hospital for almost 2 months and had 24/7 dialysis for most of her time here. She had to learn how to walk again at age 6 because she was always hooked up to the dialysis machine. She is now type 1 diabetic as a result of the HUS. They told me it would recover but never did. A year after the HUS episode she had her gallbladder removed. Then a few months later she was diagnosed with chronic pancreatitis. Now we realize her pancreas is no longer producing digestive enzymes now having to take pills before she eats any food with fats. It has been one hell of a rollercoaster ride. Our battle isn't over yet. Her chronic pancreatitis is causing continuous pain. The fact that she is type 1 diabetic and not producing any digestive enzymes. The risk of cancer is high with chronic pancreatitis and we are now looking into doing a pancreatic transplant.
MOMMAF
MOMMAF
She has been through a lot! I didn't realize the damage from HUS could keep going on and on for so long. So scary!!! A rollercoaster ride is exactly how we have described this whole thing. As soon as you think you are ok in one area, something comes up. We thought his kidneys were fine at this point, then the lab results showed they had damage and are functioning at 70%, which is fine, but the doctor said it could still get worse months from now. My son had to learn to walk again as well. Mindblowing how something so small can wreak such havoc!!
TheMer
TheMer
Just some advise...you will have to fight for your kid. Our nephrologist told us that HUS can appear later in life and the kidneys can fail for no reason. Do lots of research and when a doctor tells you something ask questions and do more research. Doctors don't think outside of the box. They are use to regular every day things. We once saw a GI specialist because she was having stomach pain. Had scans and labs done that suggested stones in her gallbladder. The GI specialist said NOPE she has acid reflux and put her on meds. One month later we were in the hospital because there was a stone in the gallbladder that was now causing an infection because bile was building up and she had her gallbladder removed. My point is, I was happy to hear from the GI specialist that her gallbladder is fine with the diagnosis being acid reflux but I should've asked more question and I should've done more research.
MOMMAF
MOMMAF
Thank you! All good to know! I had no idea that the effects could go on and on and on so long.