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...
Hello, My name is Heidi. I'm the mother of a 12 yr old daughter who is 1 1/2 years post HUS. We are looking for answers to many questions. While we have very minimal kidney damage her body is not the same. She has been almost bed ridden for a year. They have done TESTS and TESTS and can't tell us what has happened, but they do admit her body is not functioning. I will tell our story here, hoping that someone recognizes these symptoms and knows an answer.
One day our daugther was running, playing and normal in every way, then she caught e'coli. Dr's have told me her case was very bad. She vomitted around the clock constantly for the first 6 wks. She had the terrible diahrrea and dehydration and on day 7, it turned to HUS. We were sent to Doernbecher Children's Hospital where nephrologists gave her dialysis and all types of life saving measures for days as we waited to see if she would be brain damaged. After about 6 wks her kidneys picked up and we went home with high blood pressure, but off dialysis. We were told that she should be basically normal within 6 months
At first she gained strength and did pretty well, slowly gaining strength and by the end of 3 months able to walk several blocks, laugh and participate in life. Her blood pressure stabalized a bit high, but not significantly and they took her off meds.
Then it was like a switch flipped, she started getting sicker again, dizzy, gagging, weak enough to fall, visual problems, horrible stomach pains. Her gallbladder was in terrible shape from the HUS and we ended up with a surgery to take it out. We realized that she had become gluten intolerant and for a time that helped the constant vomitting. There have been times when the symptoms lessen, but never go away.
Dr's now talk to us about fibromyalgia and Chronic fatigue Syndrome. She has constant joint pain, her skin is sensitive to touch, it is very difficult for her to eat. She is VERY dizzy, she nauseas most of the time and gags constantly even when not feeling nauseas. She is exhausted. You know how when someone has been in the hospital for a longtime you can see it in their eyes and face. That's how it is.
I don't know where to look, or who else to ask if they've seen this before. Our Dr's tell us they have never seen a patient with these problems post HUS. I decided tonight that the only I haven't done is post our story to every message board I can find in hopes of finding someone else whose journey matches ours.
Looking for a miracle, Heidi
One day our daugther was running, playing and normal in every way, then she caught e'coli. Dr's have told me her case was very bad. She vomitted around the clock constantly for the first 6 wks. She had the terrible diahrrea and dehydration and on day 7, it turned to HUS. We were sent to Doernbecher Children's Hospital where nephrologists gave her dialysis and all types of life saving measures for days as we waited to see if she would be brain damaged. After about 6 wks her kidneys picked up and we went home with high blood pressure, but off dialysis. We were told that she should be basically normal within 6 months
At first she gained strength and did pretty well, slowly gaining strength and by the end of 3 months able to walk several blocks, laugh and participate in life. Her blood pressure stabalized a bit high, but not significantly and they took her off meds.
Then it was like a switch flipped, she started getting sicker again, dizzy, gagging, weak enough to fall, visual problems, horrible stomach pains. Her gallbladder was in terrible shape from the HUS and we ended up with a surgery to take it out. We realized that she had become gluten intolerant and for a time that helped the constant vomitting. There have been times when the symptoms lessen, but never go away.
Dr's now talk to us about fibromyalgia and Chronic fatigue Syndrome. She has constant joint pain, her skin is sensitive to touch, it is very difficult for her to eat. She is VERY dizzy, she nauseas most of the time and gags constantly even when not feeling nauseas. She is exhausted. You know how when someone has been in the hospital for a longtime you can see it in their eyes and face. That's how it is.
I don't know where to look, or who else to ask if they've seen this before. Our Dr's tell us they have never seen a patient with these problems post HUS. I decided tonight that the only I haven't done is post our story to every message board I can find in hopes of finding someone else whose journey matches ours.
Looking for a miracle, Heidi
God bless. -B
I am not sure if this is the same. She never complained about feeling dizzy, joint pain or skin sensitivity but she was always tired. I hope this helps you and I pray you figure out whats going on. I understand your struggles so let me know if you have any questions for me.
I originally come join this site because my daughter has been wetting the bed ever since she was released from the hospital in 2013. Trying to figure out how HUS could have damaged her bladder. Hasnt wet the bed since she was 2.
God Bless,
Katie