beattyfamily
DIS Cast Member
- Joined
- Jul 13, 2000
- Messages
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I'm writing this story because our daughter is sick today (with diarrhea) and every time she gets diarrhea now I think of the ordeal we went through last Summer; if she's got diarrhea again tomorrow, I'll bring her to the doctor for a stool test to see what's causing it. It's just a reminder to me how lucky we are and how careful we must be. I also can't believe how no one's ever heard of this disease (us included before her illness). Not even nurses and doctors I've come across.
I thought I'd spread the word to any parents I could the dangers of ground beef, chicken, and petting zoos to our children. Also the dangers of antibiotics to your child if they do, indeed, get E-Coli.
Our daughter got E-Coli either from a petting zoo we went to 5 days before she got sick or ground beef from 2 days before she got sick. WASH your hands OFTEN, keep children away from raw meat, and cook the meat thoroughly!
Hemolytic (HEE-mo-LIT-ik) Uremic (yoo-REE-mik) Syndrome (HUS) is a rare condition. HUS is characterized by destruction of red blood cells, damage to the lining of blood vessel walls, and, in severe cases, kidney failure. Approximately one in every ten children who have E.coli 0157:H7 gastroenteritis will go on to develop Hemolytic Uremic Syndrome. HUS is caused by the effect of toxins (produced by the E.coli bacteria) on the body's circulation, affecting red blood cells, the kidneys, and in some cases, the brain. Antibiotics increases the risk of getting HUS if given to someone with E-Coli.
Our daughter's ordeal started July 4, 2002 . She was 2 years and 9 months old.
It started on the 4th of July. Our daughter started having diarrhea; almost every 10 minutes or so. She also complained of stomach pain. Then the next day while continuing with the diarrhea, she through up a little chocolate milk. The diarrhea continued both Saturday and Sunday, and then Sunday night she threw up her cup of chocolate milk again. She loves her chocolate milk so much and we were afraid she was getting dehydrated so we kept giving in and giving her a cup of chocolate milk, which she continued to throw up. Finally, we convinced her to drink juice and water and she reluctantly complied.
Monday, July 8, I took her to see her PCP but got the nurse practitioner instead. She chalked it up to a stomach virus and told us that liquids were the most important thing right now. She also said she had an ear infection and put her on Zithromax for 5 days (big mistake!). Well, she got worse instead of better. Tuesday and Wednesday she got very sleepy and lethargic
and she still wasn't eating. She still had diarrhea too. Then I noticed her eyes were puffy on Wednesday and Thursday and on Wednesday, strange black and blues mysteriously appeared on her legs. She also didn't pee much on Wednesday and on Thursday morning, she peed but it was very dark and it
didn't smell.
I proceeded to research her symptoms (puffy eyes and dark urine) on the Internet. I found references to complications regarding kidney function; that it usually means kidney failure. That was enough to scare me, and after consulting with our doctor's office, I took her to the ER at 3:00 p.m. on July 11.
At the Hospital, they immediately put a saline IV in her, for fear of
dehydration. Then a second IV (sugar) followed up. At the same time, they took blood, and also urine through a catheter. About three hours later, they came back and said that the blood showed some abnormality, and they thought it might have been drawn incorrectly. So they took additional blood for testing. Over an hour later they told us she had E-Coli and that it's turned into HUS. They confirmed that her kidney functionality had been compromised, and the toxins, which are naturally drawn to organs with receptors, were overwhelming it: It can attack the kidney, the pancreas, and the brain. As it turned out, the IV fluids were a BAD idea since her diminished kidney was not able to keep up with her normal blood flow much less the addition of extra fluids. The result was that she actually got a bit worse as her blood pressure rose and her red blood cell count fell and she started to retain more fluids in her legs as well as her eyes. A continuation of that situation would have been catastrophic. Also, the doctor at the Hospital didn't even see an ear infection. Upon researching HUS, we found that giving a child antibiotics when they have E-Coli increases their chances of getting HUS so theoretically, our daughter could have gotten HUS from the antibiotics prescribed to her by the nurse practitioner!! This gets me VERY angry every time I think about it, but my husband keeps saying they didn't know (about the E-Coli) and they were trying to help her...whatever.
At around 8:30 p.m., our local ER sent her to Children's Hospital by ambulance (with Mom). We arrived around 9:30 p.m., where they stopped all fluid input. Dehydrated as she was, they needed to give her only kidney a break. Not overloading it was the important issue at hand, but that was only half the problem (her lack of kidney function to purify the blood). The other half of the problem was that the E-Coli was attacking her Red blood cells at a rate faster then her body could replace them. Red blood
cells carry oxygen, and so, this too was life threatening, unless reversed.
Unfortunately, there is no treatment to stop the process. The treatment merely involves close monitoring, in order to ensure that: 1) kidney function remains at a workable level (otherwise dialysis is needed) and 2) That her red cell count remains high enough to sustain her (otherwise a transfusion is in order, which would also require dialysis).
And so, a close watch was made on her urine output, and after several hours of consistent (slow) production, she was allowed to drink an amount of water, equivalent to her urine output (so as to not have a net fluid gain). For the first night, that meant that she got about one tablespoon of water per hour, hardly enough to quench her little lips. But she is a strong little girl.
Her blood was also closely monitored. They put in a second IV for taking blood. Every 6 hours they took two vials and we were told that they would liked to do it every 4 hours, but her low red count wouldn't allow that much of a loss.
By early Friday morning (6:00 am, July 12), all indications were that she had somewhat stabilized. Her kidney function was reduced, but at a consistent level. Her catheter showed a regular flow, and imminent kidney failure didn't seem likely, although we were told that it could very quickly get worse. Her blood count continued to fall, but not so drastically as to yet require a transfusion, and the drop was consistent with what they
expected, and so scared as we were, we also new that things could be much worse.
Dad stayed with her the rest of that first night while at 1:00 a.m., I took an exhausted big sister home. I came to relieve Dad at around noon Friday, and when Dad left at around 5:00 p.m., she still didn't look too well. She was very tired (the lack of red blood cells), complaining of stomach pain and pain from the catheter, and quite literally begging for food and water (by noon time she had given up on the begging, as the anemia took it's toll, and she lost the energy to plead). It was the most heart-wrenching moments of our lives.
When Dad came back to Children's on Saturday afternoon (July 13), our daughter looked much better. She was sitting up in bed, one of her two blood IV's had been removed, and she was singing and playing with her toys! We were so happy. Her red count had somewhat leveled off, her urine output was markedly increased, to the point where: the same little girl, who was begging for water, now had more than she even wanted. To boot, she was drinking fruit punch! She was put on a low Sodium, Potassium and Phosphorus diet (all of which were at increased levels in her blood), but... she had food and drink and she was happy! Her blood tests went from 4x per day to 2x per day, to 1x per day.
She still had pain in her tummy and still had the catheter though. She was still getting regular medicine for high blood pressure (as needed), a calcium supplement 4 times a day, and a folic acid supplement once a day. She didn't like them, but she took them without too much fight, and ended each nurses' visit with a 'thank you'.
Sunday morning (July 14), Dad got the best news yet from the kidney specialist. He was told that our daughter has now probably seen the worst of it, and would only get better. It will be slow, but they expect consistent improvement. In addition, her catheter came out at 11:00 am.
I was back in our daughter's room around 12:00p, and I brought her her Ariel (Little Mermaid) jammies, which she was all too happy to slip into, now that her catheter was gone. By the time Dad left Sunday evening, she was almost back to her 'old', wonderful self. She was refusing to eat; she was getting
upset when she didn't get exactly her way! Yes, those are situations that we often wish didn't occur, but in our daughter's case, those cases of normalcy give us more comfort that we can even begin to express.
Monday (July 15), her blood work was starting to go up. They said if it continued to go up, that we could continue what the hospital was doing from home. She didn't need the high blood pressure medicine for a whole day now.
Then Tuesday (July 16), after they took her blood, they said it had gone up again and that she could go home after lunch! They said she didn't need to restrict her fluids anymore and she didn't need the diet anymore; just the calcium (till Friday), and the folic acid for 28 days. They said she will still be cranky, tired, and should stay away from milk for awhile (upsets her stomach) but that she'd get better and better. They said it would take
about a month for her red blood cells to be back to normal. She'll need to do a follow up visit and blood work from her PCP on Friday (July 19) and that she should come back to Children's Hospital on July 31 for her follow up and blood work.
The worst was over!!! We drove her home around 5:30 Tuesday, July 16. We stopped and picked up her prescriptions and got her favorite dinner, pizza!
Wednesday (July 17), she was back to playing with her toys and looking happy and getting better. She still complained that it hurt when she peed.
Thursday (July 18), she awoke with puffy eyes again and complaining that it hurt when she peed. I was sure it was a UTI so she called the doctor. The doctor saw her and said she looks good and sent us off to the ER for blood work (routine) and for a urine test to see if, in fact, she did have a UTI. We were gone for 4 hours! Her blood work went up a little, but her urine test wouldn't come back till Saturday.
Friday (July 19), I called the doctor again to say her eyes were puffy again and that she still was complaining of pain when she peed and she had a low-grade fever. The doctor asked me to bring her in again so she could have a look at her and was sending her back to the ER for a shot of antibiotics and a prescription of antibiotics (that the renal doctor's at Children's recommended due to her kidney problems). The prescription is for
Cypro and no pharmacy had it. I went to 5 local pharmacies while the PCP was also calling around. We finally ended up getting it at Children's Hospital in Boston. Dad picked it up. She HATES it. We fight everyday with the Calcium, which ended Friday night and now the antibiotic. This day was another 3 hours out at the ER and looking for the prescription!
Now our daughter will have to have her blood pressure and urine tested annually for the indefinite future. She will go to Children's Hospital once a year indefinitely. She seems to be fine now but we will never forget and never be the same. Doctors don't really know the long-term affects of this terrible disease as it's quite new. We will never buy ground beef again,we rarely eat hamburgers in restaurants anymore, and we will NOT be visiting a
petting zoo ever again.
God has blessed us with a second chance with our daughter and we are truly grateful! We believe it WAS a miracle that she didn't need dialysis, a transfusion, or a transplant! Oh yeah, I forgot to mention, she was born with only one kidney!
It's truly a miracle!
Thanks for sharing my (DD's) LONG story. I think I just needed to get this off my chest.
I thought I'd spread the word to any parents I could the dangers of ground beef, chicken, and petting zoos to our children. Also the dangers of antibiotics to your child if they do, indeed, get E-Coli.
Our daughter got E-Coli either from a petting zoo we went to 5 days before she got sick or ground beef from 2 days before she got sick. WASH your hands OFTEN, keep children away from raw meat, and cook the meat thoroughly!
Hemolytic (HEE-mo-LIT-ik) Uremic (yoo-REE-mik) Syndrome (HUS) is a rare condition. HUS is characterized by destruction of red blood cells, damage to the lining of blood vessel walls, and, in severe cases, kidney failure. Approximately one in every ten children who have E.coli 0157:H7 gastroenteritis will go on to develop Hemolytic Uremic Syndrome. HUS is caused by the effect of toxins (produced by the E.coli bacteria) on the body's circulation, affecting red blood cells, the kidneys, and in some cases, the brain. Antibiotics increases the risk of getting HUS if given to someone with E-Coli.
Our daughter's ordeal started July 4, 2002 . She was 2 years and 9 months old.
It started on the 4th of July. Our daughter started having diarrhea; almost every 10 minutes or so. She also complained of stomach pain. Then the next day while continuing with the diarrhea, she through up a little chocolate milk. The diarrhea continued both Saturday and Sunday, and then Sunday night she threw up her cup of chocolate milk again. She loves her chocolate milk so much and we were afraid she was getting dehydrated so we kept giving in and giving her a cup of chocolate milk, which she continued to throw up. Finally, we convinced her to drink juice and water and she reluctantly complied.
Monday, July 8, I took her to see her PCP but got the nurse practitioner instead. She chalked it up to a stomach virus and told us that liquids were the most important thing right now. She also said she had an ear infection and put her on Zithromax for 5 days (big mistake!). Well, she got worse instead of better. Tuesday and Wednesday she got very sleepy and lethargic
and she still wasn't eating. She still had diarrhea too. Then I noticed her eyes were puffy on Wednesday and Thursday and on Wednesday, strange black and blues mysteriously appeared on her legs. She also didn't pee much on Wednesday and on Thursday morning, she peed but it was very dark and it
didn't smell.
I proceeded to research her symptoms (puffy eyes and dark urine) on the Internet. I found references to complications regarding kidney function; that it usually means kidney failure. That was enough to scare me, and after consulting with our doctor's office, I took her to the ER at 3:00 p.m. on July 11.
At the Hospital, they immediately put a saline IV in her, for fear of
dehydration. Then a second IV (sugar) followed up. At the same time, they took blood, and also urine through a catheter. About three hours later, they came back and said that the blood showed some abnormality, and they thought it might have been drawn incorrectly. So they took additional blood for testing. Over an hour later they told us she had E-Coli and that it's turned into HUS. They confirmed that her kidney functionality had been compromised, and the toxins, which are naturally drawn to organs with receptors, were overwhelming it: It can attack the kidney, the pancreas, and the brain. As it turned out, the IV fluids were a BAD idea since her diminished kidney was not able to keep up with her normal blood flow much less the addition of extra fluids. The result was that she actually got a bit worse as her blood pressure rose and her red blood cell count fell and she started to retain more fluids in her legs as well as her eyes. A continuation of that situation would have been catastrophic. Also, the doctor at the Hospital didn't even see an ear infection. Upon researching HUS, we found that giving a child antibiotics when they have E-Coli increases their chances of getting HUS so theoretically, our daughter could have gotten HUS from the antibiotics prescribed to her by the nurse practitioner!! This gets me VERY angry every time I think about it, but my husband keeps saying they didn't know (about the E-Coli) and they were trying to help her...whatever.
At around 8:30 p.m., our local ER sent her to Children's Hospital by ambulance (with Mom). We arrived around 9:30 p.m., where they stopped all fluid input. Dehydrated as she was, they needed to give her only kidney a break. Not overloading it was the important issue at hand, but that was only half the problem (her lack of kidney function to purify the blood). The other half of the problem was that the E-Coli was attacking her Red blood cells at a rate faster then her body could replace them. Red blood
cells carry oxygen, and so, this too was life threatening, unless reversed.
Unfortunately, there is no treatment to stop the process. The treatment merely involves close monitoring, in order to ensure that: 1) kidney function remains at a workable level (otherwise dialysis is needed) and 2) That her red cell count remains high enough to sustain her (otherwise a transfusion is in order, which would also require dialysis).
And so, a close watch was made on her urine output, and after several hours of consistent (slow) production, she was allowed to drink an amount of water, equivalent to her urine output (so as to not have a net fluid gain). For the first night, that meant that she got about one tablespoon of water per hour, hardly enough to quench her little lips. But she is a strong little girl.
Her blood was also closely monitored. They put in a second IV for taking blood. Every 6 hours they took two vials and we were told that they would liked to do it every 4 hours, but her low red count wouldn't allow that much of a loss.
By early Friday morning (6:00 am, July 12), all indications were that she had somewhat stabilized. Her kidney function was reduced, but at a consistent level. Her catheter showed a regular flow, and imminent kidney failure didn't seem likely, although we were told that it could very quickly get worse. Her blood count continued to fall, but not so drastically as to yet require a transfusion, and the drop was consistent with what they
expected, and so scared as we were, we also new that things could be much worse.
Dad stayed with her the rest of that first night while at 1:00 a.m., I took an exhausted big sister home. I came to relieve Dad at around noon Friday, and when Dad left at around 5:00 p.m., she still didn't look too well. She was very tired (the lack of red blood cells), complaining of stomach pain and pain from the catheter, and quite literally begging for food and water (by noon time she had given up on the begging, as the anemia took it's toll, and she lost the energy to plead). It was the most heart-wrenching moments of our lives.
When Dad came back to Children's on Saturday afternoon (July 13), our daughter looked much better. She was sitting up in bed, one of her two blood IV's had been removed, and she was singing and playing with her toys! We were so happy. Her red count had somewhat leveled off, her urine output was markedly increased, to the point where: the same little girl, who was begging for water, now had more than she even wanted. To boot, she was drinking fruit punch! She was put on a low Sodium, Potassium and Phosphorus diet (all of which were at increased levels in her blood), but... she had food and drink and she was happy! Her blood tests went from 4x per day to 2x per day, to 1x per day.
She still had pain in her tummy and still had the catheter though. She was still getting regular medicine for high blood pressure (as needed), a calcium supplement 4 times a day, and a folic acid supplement once a day. She didn't like them, but she took them without too much fight, and ended each nurses' visit with a 'thank you'.
Sunday morning (July 14), Dad got the best news yet from the kidney specialist. He was told that our daughter has now probably seen the worst of it, and would only get better. It will be slow, but they expect consistent improvement. In addition, her catheter came out at 11:00 am.
I was back in our daughter's room around 12:00p, and I brought her her Ariel (Little Mermaid) jammies, which she was all too happy to slip into, now that her catheter was gone. By the time Dad left Sunday evening, she was almost back to her 'old', wonderful self. She was refusing to eat; she was getting
upset when she didn't get exactly her way! Yes, those are situations that we often wish didn't occur, but in our daughter's case, those cases of normalcy give us more comfort that we can even begin to express.
Monday (July 15), her blood work was starting to go up. They said if it continued to go up, that we could continue what the hospital was doing from home. She didn't need the high blood pressure medicine for a whole day now.
Then Tuesday (July 16), after they took her blood, they said it had gone up again and that she could go home after lunch! They said she didn't need to restrict her fluids anymore and she didn't need the diet anymore; just the calcium (till Friday), and the folic acid for 28 days. They said she will still be cranky, tired, and should stay away from milk for awhile (upsets her stomach) but that she'd get better and better. They said it would take
about a month for her red blood cells to be back to normal. She'll need to do a follow up visit and blood work from her PCP on Friday (July 19) and that she should come back to Children's Hospital on July 31 for her follow up and blood work.
The worst was over!!! We drove her home around 5:30 Tuesday, July 16. We stopped and picked up her prescriptions and got her favorite dinner, pizza!
Wednesday (July 17), she was back to playing with her toys and looking happy and getting better. She still complained that it hurt when she peed.
Thursday (July 18), she awoke with puffy eyes again and complaining that it hurt when she peed. I was sure it was a UTI so she called the doctor. The doctor saw her and said she looks good and sent us off to the ER for blood work (routine) and for a urine test to see if, in fact, she did have a UTI. We were gone for 4 hours! Her blood work went up a little, but her urine test wouldn't come back till Saturday.
Friday (July 19), I called the doctor again to say her eyes were puffy again and that she still was complaining of pain when she peed and she had a low-grade fever. The doctor asked me to bring her in again so she could have a look at her and was sending her back to the ER for a shot of antibiotics and a prescription of antibiotics (that the renal doctor's at Children's recommended due to her kidney problems). The prescription is for
Cypro and no pharmacy had it. I went to 5 local pharmacies while the PCP was also calling around. We finally ended up getting it at Children's Hospital in Boston. Dad picked it up. She HATES it. We fight everyday with the Calcium, which ended Friday night and now the antibiotic. This day was another 3 hours out at the ER and looking for the prescription!
Now our daughter will have to have her blood pressure and urine tested annually for the indefinite future. She will go to Children's Hospital once a year indefinitely. She seems to be fine now but we will never forget and never be the same. Doctors don't really know the long-term affects of this terrible disease as it's quite new. We will never buy ground beef again,we rarely eat hamburgers in restaurants anymore, and we will NOT be visiting a
petting zoo ever again.
God has blessed us with a second chance with our daughter and we are truly grateful! We believe it WAS a miracle that she didn't need dialysis, a transfusion, or a transplant! Oh yeah, I forgot to mention, she was born with only one kidney!
It's truly a miracle!
Thanks for sharing my (DD's) LONG story. I think I just needed to get this off my chest.
I have heard of HUS and read about the effects but never from such a personal level. I'm so glad your daughter is better but how nerve-wracking to deal with the long-term effects. I am neurotic about ground beef and the cooking temperature and hand-washing after petting zoos. Thank you for the very important reminder.
