CPKDRC Guests

The following are exerpts from letters sent to this website.

• "I am a parent of a beautiful 4 year old girl who had E-Coli HUS, two years ago...What do you have concerning long term studies that you could send me? I am a worried parent." - USA
• My son has minimal change type nephrotic...I would appreciate any references to medical journal articles on these topics...A Canadian friend sent me a copy of your booklet on this disease ...." - USA
• "I am interested in HUS. Please give me information." - KOREA
• Thank you providing the futher information about HUS. Recently, in Japan, many children caught HUS syndrome by O-157, and are getting the medical Cure&Care. But, in my hometown Kyoto-Pref., many person & children in Japan has death by HUS. I'd like to know about how to fight against the HUS & O-157, and provide to my friend, staffs & parents. I do not want to FEAR only, I want to know what is the HUS...Thank you so much again to your information." - JAPAN
• "We're compiling information on HUS. Our child contracted HUS from Odwalla juice. See Kidsource for some of the info we aleady have." - USA
• "My daughter had HUS 1.5 yrs ago. She survived and is almost 4 yrs old now. Source was unknown." - USA
• "My niece is 4yrs old and has HUS. She's had blood transfusions, and recently was put on dialysis. Her brain started swelling yesterday and she went into a coma earlier today. She's conscience now....I believe the doctors are doing all they can, but I believe you have dealt with this before and may be able to give them some suggestions." - USA
• "My son contracted Atypical(non-diarrhea-associated)HUS, we firmly believe from a McDonalds Cheeseburger. What a high price to pay for a "happymeal". Thank god for an early diagnosis and being rushed to UCLA. After 12 rounds of plasma exchange and the use of lasics? he is doing well." - Manhattan Beach, California, USA
• "My daughter had HUS 7 years ago and is now 12.She was on dialysis and had 2 chest tubes;hospitalized for 5 weeks at UVA in Virginia. She has had complete recovery but now her blood pressure is a little high and I am concerned about long term effects. I would appreciate any info on that. Thanks." - Ann Parsons, Edwardsville, Illinois, USA
• "I became ill with E.Coli-HUS when I was 16 years old. The illness was very difficult to diagnose. I was hospitalized for two weeks and thankfully made a complete recovery. It was strongly believed I was infected from a "Wendy's" hamburger. Please send me any information you have on long term effects." - KMB, USA
• "My 14 year old daughter became infected with HUS in 1984. Then noone knew the cause and there was no support groups. She was in intensive care at Arkansas Childrens Hospital for a month and spent another month in therapy. She had complete kidney failure for 26 days, now her kidney had full function. She has lost her sense of balance requiring fore-arm crutches to walk. Anyone needing to talk? E-mail me. MH, USA (mhickey@cyberback.com)
• My daughter contracted HUS at a County Fair in 1995. Parents must always be adamant about seeking diagnosis for their children. By the time I finally got someone to take me seriously, my daughter was severely anemic and required a blood transfusion. She came through the ordeal fine, and required no dialysis. But the lethargy and extent of the diarhea are symptons forever etched in my brain. Symptons that I truly wish that I had FORCED one of the many doctors we saw to pay attention to. R.N.
• My daughter was diagnosed with HUS in January of 1979. She was 2 years old. She lived with this very nasty illness for 17 years. She passed away at the age of 19 years. She died in May of 1996. I just want to say that not all cases of HUS are caused from E-Coli bacteria. My daughters HUS was not caused from E-Coli. She was born with it. There was no other documentation of HUS in our families history. My heart goes out to any parent who is going thru this hard time with their child that has HUS. My daughter's fight was long and a hard one. She would recover from it only to be stricken with it again a few years later. Hang in there and don't give up the fight. Betty Grant (bettygrant@hotmail.com), USA
• Thank you cpkdrc for providing this forum. I am the very concerned mother of an E.Coli0157:H7 induced HUS victim. He became ill in June,1994. He was hospitalized for 2 weeks, on peritoneal dialysis for 6 days, received 3 blood and 3 platelet transfusions, had a seizure, had rectal prolapse, and pancreatitis, and still to this day complains almost daily of abdominal pain. I would love to hear from anyone who had a child with this horrible disease. I am searching for information (as many of you are) on the long term effects of this disease. Contact me at smwp@bright.net Thank you! S.P., USA
• We have a 3 year old who has been fighting atypical, recurrant HUS since he was 3 months. We are interested in meeting with others and gathering information on atypical HUS. G.B. (genejr@tne.ne), USA
• My 8 year old daugter was diagnosed today as to having HUS. She is in the ICU ward at Long Beach Memorial Hospital. We are very scared that we are going to loose her to this terrible disease. The doctors tell me that they are doing everything that they can for her. Please let me know any info on this disease. We are praying for all of your children. S.S., USA
• My daughter, nearly 3 years ago, at the age of 7 years contracted HUS, believed to be from a hamburger. I am interested in the long term effects this may have on her. I would be interested in hearing from any parents of older teenagers, young adults, whose children have suffered from this when they were younger, my interest being that I would like to know whether she will suffer any future difficulties. Our hospital is not too knowledgable as to whether she will have any problems with having children or even partaking in social drinking as an adult. I crave information from anyone on this awful condition, so that I can ensure that I can help my daughter to hopefully lead a normal adult life. C.W., U.K.
• In 1978 my 5 year old son developed HUS after being diagnosed with the bacterial infection Shigella. He was in critical condition in Columbus Children's Hospital for 13 days and after receiving a blood transfusion he improved and and in a few months was completely healthy with no apparent after affects. We were told at the time that most children do not survive HUS and we have always felt it was a miracle he survived. I have often wondered what the long term affect of HUS might be....USA
• My daughter is just home from UVA hospital in Virginia recovering from HUS. The cause of her HUS is unknown, but it was not caused from E Coli. Luckily I questioned the Dr's diagnosis that she just had a virus. She had to have a blood transfusion on her first night in the hospital, but seems to be doing well now. V.K. (vkinney@pen.k12.va.us), USA
• My brother obtained the disease in 1974 when he was not even a year old. He went into a coma, was on his death bed and managed by a miracle to live. In 1993 he got another disease called ITP. He was cured from that in 1995. I believe they are related. Today my brother lives a normal life at 23 years old. Jarred Kessler (jarred77@aol.com), USA
• My four year old daughter was diagnosed with HUS in the fall of 1996. After having all the symptoms of a bad stomach virus, she went into kidney failure . After approx. 4 weeks of blood transfusions, dialysis, etc., her kidneys began functioning during the middle of the night and she was released from Duke a few days later. It took several months for her to truly recover. She is fine now! This was truly the most terrifying experience of my entire life, USA

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