My ds Zenus has a complicated history with C-diff. He was dx w/Acute Lymphoblastic Leukemia, (ALL, a form of pediatric cancer) on 2/14/05 and began chemotherapy. He achieved remission after 14 days and left the hospital, (Children's Hospital of Philadelphia.) However, he was readmitted a couple of other times to Lehigh Valley Hospital; on one of these occations he likely contracted C-diff.
Zenus had diarreah on and off in April 2005, and finally tested positive for C-diff on May 5. Unfortunately he was far too sick for flagyl to work at that point and in fact he was hospitalized on May 12 when he started vanco. We had a very rocky road during what ended up being a 32-day inpatient stay: a terrible diaper rash called cellulitis which lead to a fungal infection of the blood and sepsis. Zenus had surgery to remove his supcutaneous port and was taken off chemo for over 2 weeks. He didn't eat a bite for 25 days. He was on morphine for pain and TPN (IV nutrition.)
Finally we came home on June 13, Zenus started up chemo again on June 27. Here are the dates of his reoccurances and treatments:
June 28 - positive C-diff, start vanco 14 days
July 18 - admitted to hospital for fever and neutropenia, (received IV antibiotics)
July 28 - clinical signs of C-diff, but negative C-diff test, start vanco
August 26 - positive C-diff, start vanco
September 16 - positive C-diff, start flagyl
October 6 - positive C-diff, start vanco
November 7 - endoscope shows no damage to colon
November 8 - positive C-diff, start vanco
December 12 - positive C-diff, start vanco for 1 month, his longest tx
My dh and I believe that the C-diff is NOT reoccuring so frequently, but has never actually gone away. Zenus has occationally tested negative for the C-diff toxin. I do not know if they have done a culture of the stool although I have requested it be done.
Zenus had no health issues prior to being dx with ALL.
Zenus is treated by a pediatric oncologist, pediatric GI, and will be seeing a pediatric ID physician in January.
Zenus was taking Prevacid, a proton pump inhibitor, since May, 2005. With recent studies he has stopped taking it.
Written by his mother, Erica
Zenus, 2 year old
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ehoelscher
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Zenus, 2 year old
Erica Hoelscher, mom to Zenus, dx pre-B Acute Lymphoblastic Leukemia, 2/14/05, C-diff 4/05 - 5/06. C-diff free today
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ehoelscher
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Update on Zenus 1/14/06
Zenus was seen by a pediatric GI and peds Infectious Disease on 1/13/06. Visits were positive, but not immediately helpful. Noteworthy opinions/ideas from doctors included:
GI - suggested a process of "flushing him out," which reminds me of the broth tx that I've read about here. We don't mind this but are a little concerned about Zenus' weight. Since being on chemo Zenus has gone from the 85% on the growth chart to the 25%!
GI was amenable to trying a tapered dose of vanco followed by pulsing or prophylactic dose to keep c-diff away. Also some interest in Alinia.
ID gave us the most information and hope. Zenus saw Dr. Jason Kim, who stated he was NOT in favor of a tapered dose of vanco nor pulsing/prophylatic dosing. He said that either vanco will work or it won't and the c-diff should be going AWAY! He too held out some hope for Alinia.
C-diff in pediatric patients is not as serious/life threatening as it can be in adults, especially the elderly. (No one has told us that before. It was like having a stone lifted off of us.)
C-diff in pediatric patients is not as common as in adults and therefore not as much research/tx are documented.
Dr. Kim expressed surprise that although Zenus has had negative c-diff toxin stools, his diarreah has NEVER GONE AWAY. Zenus has not had a normal stool since April, 2005. Dr. Kim stated that the usual course of tx is to give flagyl/vanco for specified amount of time, and to ignore positive toxin results after stools are normally formed.
Since Zenus has never had a formed stool, his c-diff has technically never gone away, according to Dr. Kim, OR something else entirely is causing the diarreah and the positive c-diff toxin is "just hanging out there but not causing symptoms."
What else could be causing diarreah? No one knows! Every other possibility has already been tested for twice, with the exception of an upper GI scope looking for the presence of very rare parasites. Previously we had not wanted to put Zenus through the upper GI test.
Result: For now, Zenus remains on vanco 500/10mg, 2.5ml 3x/day. He has been taking this for 1 month with only a slight improvement in the consistency/quantity of stools. Dr. Kim and Dr. Loomes in GI will put their heads together and decide what to try next.
GI - suggested a process of "flushing him out," which reminds me of the broth tx that I've read about here. We don't mind this but are a little concerned about Zenus' weight. Since being on chemo Zenus has gone from the 85% on the growth chart to the 25%!
GI was amenable to trying a tapered dose of vanco followed by pulsing or prophylactic dose to keep c-diff away. Also some interest in Alinia.
ID gave us the most information and hope. Zenus saw Dr. Jason Kim, who stated he was NOT in favor of a tapered dose of vanco nor pulsing/prophylatic dosing. He said that either vanco will work or it won't and the c-diff should be going AWAY! He too held out some hope for Alinia.
C-diff in pediatric patients is not as serious/life threatening as it can be in adults, especially the elderly. (No one has told us that before. It was like having a stone lifted off of us.)
C-diff in pediatric patients is not as common as in adults and therefore not as much research/tx are documented.
Dr. Kim expressed surprise that although Zenus has had negative c-diff toxin stools, his diarreah has NEVER GONE AWAY. Zenus has not had a normal stool since April, 2005. Dr. Kim stated that the usual course of tx is to give flagyl/vanco for specified amount of time, and to ignore positive toxin results after stools are normally formed.
Since Zenus has never had a formed stool, his c-diff has technically never gone away, according to Dr. Kim, OR something else entirely is causing the diarreah and the positive c-diff toxin is "just hanging out there but not causing symptoms."
What else could be causing diarreah? No one knows! Every other possibility has already been tested for twice, with the exception of an upper GI scope looking for the presence of very rare parasites. Previously we had not wanted to put Zenus through the upper GI test.
Result: For now, Zenus remains on vanco 500/10mg, 2.5ml 3x/day. He has been taking this for 1 month with only a slight improvement in the consistency/quantity of stools. Dr. Kim and Dr. Loomes in GI will put their heads together and decide what to try next.
Erica Hoelscher, mom to Zenus, dx pre-B Acute Lymphoblastic Leukemia, 2/14/05, C-diff 4/05 - 5/06. C-diff free today
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ehoelscher
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update on Zenus
First off, Zenus is a joy and a wonder to be around. He is cheerful and talkative and open. He is very intelligent even though his parents have not put one iota of energy into THAT, since we are focused on keeping him healthy.
Zenus has gained over 2 kg in 2 months. Clearly his absorbtion has improved even if his diarrhea has not.
Zenus stayed on vanco for a total of 10 weeks the last tx. He took 2.5ml 3x per day, (250/5) from December 12, 2005 to February 27, 2006. Zenus had diarrhea that whole time, although the quantity definitely decreased and the quality improved. Often we would see a nearly-normal stool and have our hopes dashed by a subsequent loose one.
Of course Zenus still has c-diff. He tested positive again on March 14, 2006. Zenus has had seven reoccurences of c-diff in less than a year.
All of his doctors are stunned. Dr. Kim claims that Zenus should have regrowth of "good" bacteria in his gut and be able to fend off c-diff. No one understands why the diarrhea never clears up. Dr. Kim stated that he is "very puzzled" by Zenus.
Next will be a scope - a full scope upper and lower and biopsy. We will take this step now that we know Zenus is stronger and can tolerate it. However, my husband and I believe that nothing of great relevance will be found with the scope since it is our opinion that the chemo itself is ridding the intestine of good flora and allowing c-diff to live.
Zenus has gained over 2 kg in 2 months. Clearly his absorbtion has improved even if his diarrhea has not.
Zenus stayed on vanco for a total of 10 weeks the last tx. He took 2.5ml 3x per day, (250/5) from December 12, 2005 to February 27, 2006. Zenus had diarrhea that whole time, although the quantity definitely decreased and the quality improved. Often we would see a nearly-normal stool and have our hopes dashed by a subsequent loose one.
Of course Zenus still has c-diff. He tested positive again on March 14, 2006. Zenus has had seven reoccurences of c-diff in less than a year.
All of his doctors are stunned. Dr. Kim claims that Zenus should have regrowth of "good" bacteria in his gut and be able to fend off c-diff. No one understands why the diarrhea never clears up. Dr. Kim stated that he is "very puzzled" by Zenus.
Next will be a scope - a full scope upper and lower and biopsy. We will take this step now that we know Zenus is stronger and can tolerate it. However, my husband and I believe that nothing of great relevance will be found with the scope since it is our opinion that the chemo itself is ridding the intestine of good flora and allowing c-diff to live.
Erica Hoelscher, mom to Zenus, dx pre-B Acute Lymphoblastic Leukemia, 2/14/05, C-diff 4/05 - 5/06. C-diff free today
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ehoelscher
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take a deep breath........exhale
On April 24, 2006 Zenus had an upper endoscopy and a flexible sigmoidoscopy performed by Dr. Kathleen Loomes of Children's Hospital of Philadelphia. The procedure was done under general anesthesia; Zenus also had a lumbar puncture with methotrexate and one other chemotherapy treatment. After some problems getting underway, (I'll spare you the details,) the procedure went very quickly and showed no obvious problems.
There were no structural abnormalities, no obvious infection, no colitis. The villi looked normal, no disruptions of the lining. Multiple biopsies were performed. All came back in normal range. This is good.
Since the 24th, Zenus has had problems, however. He is very bloated in the abdominal region. We do not know if this is due to the air that is blown into the system as part of the scope or if it is accumulating for some other reason. My husband *freaked out* on Thursday when Zenus' belly was very taut, hard, distended and he wasn't eating. We took him into the hospital where an x-ray was done that showed no blockage, but air throughout the stomach and the intestine. We were sent home after only five hours in the hospital because there's nothing that can be done, there's no treatment.
This air is making Zenus not want to eat or drink. He has lost a full kilogram (2.5lbs) since Monday, 24th. It is a struggle to get him to take anything and he has thrown up a couple of times as well. It is possible that this is all due to a virus, or possibly an infection, however we do not know yet because stool samples I delivered to the hospital on Friday were "lost". Zenus is not acting ill aside from mild lethargy associated with not eating. The diarreah has changed to being consistently yellow and very runny. Zenus has been on vanco now for 17 days this time.
NO ONE IS HELPING US!! We thought that having the scope would force someone to sit up and take notice. I am SO GLAD we did not scope Zenus back when he was much weaker and not able to gain weight. Somehow I knew that Zenus would have a strange reaction to the scope, no matter how many people told me it was not a big deal. The oncologist is now pointing the finger at the GI doc and so far NO ONE has been in contact with Dr. Kim.
We are at our wit's end and so very worried about our little boy.
There were no structural abnormalities, no obvious infection, no colitis. The villi looked normal, no disruptions of the lining. Multiple biopsies were performed. All came back in normal range. This is good.
Since the 24th, Zenus has had problems, however. He is very bloated in the abdominal region. We do not know if this is due to the air that is blown into the system as part of the scope or if it is accumulating for some other reason. My husband *freaked out* on Thursday when Zenus' belly was very taut, hard, distended and he wasn't eating. We took him into the hospital where an x-ray was done that showed no blockage, but air throughout the stomach and the intestine. We were sent home after only five hours in the hospital because there's nothing that can be done, there's no treatment.
This air is making Zenus not want to eat or drink. He has lost a full kilogram (2.5lbs) since Monday, 24th. It is a struggle to get him to take anything and he has thrown up a couple of times as well. It is possible that this is all due to a virus, or possibly an infection, however we do not know yet because stool samples I delivered to the hospital on Friday were "lost". Zenus is not acting ill aside from mild lethargy associated with not eating. The diarreah has changed to being consistently yellow and very runny. Zenus has been on vanco now for 17 days this time.
NO ONE IS HELPING US!! We thought that having the scope would force someone to sit up and take notice. I am SO GLAD we did not scope Zenus back when he was much weaker and not able to gain weight. Somehow I knew that Zenus would have a strange reaction to the scope, no matter how many people told me it was not a big deal. The oncologist is now pointing the finger at the GI doc and so far NO ONE has been in contact with Dr. Kim.
We are at our wit's end and so very worried about our little boy.
Erica Hoelscher, mom to Zenus, dx pre-B Acute Lymphoblastic Leukemia, 2/14/05, C-diff 4/05 - 5/06. C-diff free today
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ehoelscher
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Zenus is better
The day after I wrote my last update my husband and I were offered the option of taking our son to Children's Hospital of Philadelphia so that he could be admitted and monitored. We chose to wait a couple more days to see if we could avoid yet another hospital stay for our little guy.
We went to the oncology clinic to confront the doctors in person. We stated that we were reluctant to agree to an out-of-town admission when we had no idea what the doctors might be looking for or why the admission was needed. We brought evidence of the fact that the chemotherapy that Zenus is on may cause diarreah, (a very rare side effect found in only 3-5% of cases.) I suggested an idea I had had in my desperate brainstorming, and that I had read about here: prophylatic treament with flagyl. It has been my son's experience with c-diff that he requires vancomycin to rid him of the disease. No one wanted to keep Zenus on vanco for an extended period of time, (we did do over a month.) But, all the docs agreed to try flagyl.
At the same time, (April 2006,) Zenus was tested for physical therapy due to some delays he was exhibiting. He did not feed himself, clothe or disrobe himself. He could not jump. He could not kick or throw a ball with consistency. He could not walk up and down stairs by himself. And, of course, he had not even starting potty training at nearly 3 years of age. He did qualify for physical therapy at the time.
Zenus took a low dose of flagyl steadily for about five months. He began taking immodium to slow his gut as well. He began eating very well, gaining in confidence, gaining weight, and taking more risks. He potty-trained himself and was out of diapers shortly after his third birthday. He has been c-diff free since May of 2006, and it has changed his life. Zenus no longer has a need for physical therapy. He runs! He goes up and down stairs with confidence, (I still hold his hand.) He still tires easily, but he plays hard too. The awful disease of c-diff that had hold of him for so long was keeping him back. Now the difference is stunning.
I secretly weaned Zenus from the flagyl when I began having the strong instinct that he no longer needed it (beginning of October.) He is doing so well and is so strong that he has astonished his doctors.
I want to reiterate something I read on this website that really helped me: Don't give up hope. Keep trying. If Zenus' story seems extreme, it is, and yet it is no more extreme than many of the other stories here. In a way I am lucky in that I have been given a loud voice in the treatment of my son. Not everyone is given the kind of respect from the medical professionals that I have. It is believed that Zenus' diarreah is, (was,) caused by a combination of chemo and c-diff. Zenus still has diarreah, and one day he may again have c-diff. If that happens I will be very disappointed, but not as terrified as I was watching him disappearing before me. We manage on a daily basis with immodium and diet and keeping a close eye. Best of all, Zenus can go in the potty instead of in a diaper.
Blessed be, everyone here.
Posted by Erica Hoelscher, Zenus' mom
We went to the oncology clinic to confront the doctors in person. We stated that we were reluctant to agree to an out-of-town admission when we had no idea what the doctors might be looking for or why the admission was needed. We brought evidence of the fact that the chemotherapy that Zenus is on may cause diarreah, (a very rare side effect found in only 3-5% of cases.) I suggested an idea I had had in my desperate brainstorming, and that I had read about here: prophylatic treament with flagyl. It has been my son's experience with c-diff that he requires vancomycin to rid him of the disease. No one wanted to keep Zenus on vanco for an extended period of time, (we did do over a month.) But, all the docs agreed to try flagyl.
At the same time, (April 2006,) Zenus was tested for physical therapy due to some delays he was exhibiting. He did not feed himself, clothe or disrobe himself. He could not jump. He could not kick or throw a ball with consistency. He could not walk up and down stairs by himself. And, of course, he had not even starting potty training at nearly 3 years of age. He did qualify for physical therapy at the time.
Zenus took a low dose of flagyl steadily for about five months. He began taking immodium to slow his gut as well. He began eating very well, gaining in confidence, gaining weight, and taking more risks. He potty-trained himself and was out of diapers shortly after his third birthday. He has been c-diff free since May of 2006, and it has changed his life. Zenus no longer has a need for physical therapy. He runs! He goes up and down stairs with confidence, (I still hold his hand.) He still tires easily, but he plays hard too. The awful disease of c-diff that had hold of him for so long was keeping him back. Now the difference is stunning.
I secretly weaned Zenus from the flagyl when I began having the strong instinct that he no longer needed it (beginning of October.) He is doing so well and is so strong that he has astonished his doctors.
I want to reiterate something I read on this website that really helped me: Don't give up hope. Keep trying. If Zenus' story seems extreme, it is, and yet it is no more extreme than many of the other stories here. In a way I am lucky in that I have been given a loud voice in the treatment of my son. Not everyone is given the kind of respect from the medical professionals that I have. It is believed that Zenus' diarreah is, (was,) caused by a combination of chemo and c-diff. Zenus still has diarreah, and one day he may again have c-diff. If that happens I will be very disappointed, but not as terrified as I was watching him disappearing before me. We manage on a daily basis with immodium and diet and keeping a close eye. Best of all, Zenus can go in the potty instead of in a diaper.
Blessed be, everyone here.
Posted by Erica Hoelscher, Zenus' mom
Erica Hoelscher, mom to Zenus, dx pre-B Acute Lymphoblastic Leukemia, 2/14/05, C-diff 4/05 - 5/06. C-diff free today
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