My son is 32 months old and has c-diff. He has a long extensive medical history. In a nut shelll...he was born at 35 weeks weighing 4 lbs 5 oz with VACTERLS Association...he was born with a tethered spinal cord, imperforated anus, heart defect of truncus arteriosus with pulmonary artresia, single kidney...he has been hospitalized a total of 10 times, spending the first 12 weeks of his life in the hospital...he has had 2 open heart surgeries, 3 cardiac catheterizations, ECMO for 5 days after first heart surgery, 4 other major surgeries all within the first 18 months of his life.
August 2008 we all developed the stomach bug....end of september my son started having the diarhea (he had not been on any antibiotics in over a year at that time)...he was diagnosed with c-diff. We have done 2 rounds of flagyl, several rounds of vancomycin and this last time we weaned him off the vancomycin...he just tested positive again for c-diff...the doctors said since he really isnt showing symptoms to just wait and see...but today he has pooped 4 times already and I dont know if this will get worse or what. He gets florastor once a day and activia yogurt once a day....
Please help me...what else can I do...what else should I do....what should the doctors do....should my husband, daughter and I also be tested to see if we have it...what do we do now? Please help!
Melissa[/i]
please help me....
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Suezer
- Long Time Contributor
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- Joined: Tue Jan 20, 2009 4:06 pm
Hello, it seems like your little guy has been through the ringer with medical problems, I am so sorry he has had to suffer with C Diff on top of all of that.
I can tell you are very worried and afraid for your son, the only thing I can tell you is to watch him closely and of course contact his doctor if things become severe or dont improve. If he is going frequently, but it is NOT D or runny, that is at least a good sign.
How long was his last taper off of Vanco? And did they try any pulsing for your son?
Try to hang in there,I know it is tough!
I can tell you are very worried and afraid for your son, the only thing I can tell you is to watch him closely and of course contact his doctor if things become severe or dont improve. If he is going frequently, but it is NOT D or runny, that is at least a good sign.
How long was his last taper off of Vanco? And did they try any pulsing for your son?
Try to hang in there,I know it is tough!
Hoping for a cure.
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momoftwolittleones
- New User
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- Joined: Fri Feb 06, 2009 12:14 pm
What is pulsing? The weaned the vanc from 4 x a day to 2 x a day to 1 x a day then every other day, then every third day and this went on for a month...his last dose of vanc was april 1st. I just dont know what to do. Do I need to throw everything in my house and bleach everything again? Do I need to get tested? I just am so frustrated...
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anlockwood
- Long Time Contributor
- Posts: 456
- Joined: Sat Sep 06, 2008 9:10 am
Melissa,
First let me tell you my heart goes out to you in every way possible. I will definitely put your son and family in my prayers and please know we are all here for you to vent, question or whatever else you might need. I can't even begin to imagine all you have been through.
Ok, when you say that his last round of vanco went on for a month, does that mean the entire treatment from beginning to end? It sounds like what you did is what we would refer to as a pulse. It is a great method. If you only did it for a month though it would be considered a very short pulse. Most people go for a awhile longer then that. There are some people who have done really long tapers/pulsing from six months up to a year. Don't give up hope, there is definitely still hope. Also I wonder if your son might qualify for a infusion. I am not sure how much it has been done for children but it seems to be a very safe procedure and if push came to shove it is an option. An infusion is where they use a healthy donors stool and transfer it via Nasogastric tube to the intestines. It has an extremly high success rate especially in hard cases.
Next would be the positive test. I know not many people on hear believe there is such a thing as a false positive but I do. There is a lady who just experienced on and is fine and in the UK they full that there are false positives. My Gastro dr wouldn't test me up to 6 weeks afterwards because she said it could give a false positive for that long. My belief is its most important to go off symptoms. If he is having full blown D then seek the dr's advice. He will have good and bad days. Myself and my 5 month old son at the time both had c diff. He relapsed again at 8 months. We had many days in between then and now that we were very worried. He had some very foul diapers or days he would go 5 or 6 times. My heart would drop everytime it happened but I reminded myself to wait a day and see how things went. It eventually gets better. Hopefully your son has kicked it this time.
As far as cleaning, I am a freak about this. I would start by reading under FAQ section "cleaning". You will need the 1 part bleach to 9 parts water and I just found out that Clorox Germicidal bleach is EPA approved to kill c diff spores in 10 mins. This is not the regular Clorox. This can be purchased online or even through stores like Staples(office supply store). I am not sure if he is still diaper or is now toilet. If diaper you need to bleach the changing table every time. We use latex gloves for dirty diapers. You also need to wash your hands for 30 seconds and his hands if they get in the diaper area. If he is toilet, then many choose to bleach the toilet each time they have D. Remember anything you bleach must be in contact with it for 10 mins to kill c diff. Make sure everyone in the house washes for 30 seconds after going to the bathroom to prevent spreading it around the house. I also bleach the bathtub during outbreak, towels, and underwear. If you hadn't been doing this stuff before sometimes a good thorough clean is best and then you have peace of mind.
As far as having the rest of the family tested, I wouldn't worry about that unless you are having symptoms. Only 3% of the population carries this in normal gut flora but it shouldn't be an issue if you are using good hygiene procedures. It would be very unlikely that someone else is giving this too him. More likely he is just having relapses.
Please know your son will get through this and we are here for how many ever questions you might end up having!
Amanda
First let me tell you my heart goes out to you in every way possible. I will definitely put your son and family in my prayers and please know we are all here for you to vent, question or whatever else you might need. I can't even begin to imagine all you have been through.
Ok, when you say that his last round of vanco went on for a month, does that mean the entire treatment from beginning to end? It sounds like what you did is what we would refer to as a pulse. It is a great method. If you only did it for a month though it would be considered a very short pulse. Most people go for a awhile longer then that. There are some people who have done really long tapers/pulsing from six months up to a year. Don't give up hope, there is definitely still hope. Also I wonder if your son might qualify for a infusion. I am not sure how much it has been done for children but it seems to be a very safe procedure and if push came to shove it is an option. An infusion is where they use a healthy donors stool and transfer it via Nasogastric tube to the intestines. It has an extremly high success rate especially in hard cases.
Next would be the positive test. I know not many people on hear believe there is such a thing as a false positive but I do. There is a lady who just experienced on and is fine and in the UK they full that there are false positives. My Gastro dr wouldn't test me up to 6 weeks afterwards because she said it could give a false positive for that long. My belief is its most important to go off symptoms. If he is having full blown D then seek the dr's advice. He will have good and bad days. Myself and my 5 month old son at the time both had c diff. He relapsed again at 8 months. We had many days in between then and now that we were very worried. He had some very foul diapers or days he would go 5 or 6 times. My heart would drop everytime it happened but I reminded myself to wait a day and see how things went. It eventually gets better. Hopefully your son has kicked it this time.
As far as cleaning, I am a freak about this. I would start by reading under FAQ section "cleaning". You will need the 1 part bleach to 9 parts water and I just found out that Clorox Germicidal bleach is EPA approved to kill c diff spores in 10 mins. This is not the regular Clorox. This can be purchased online or even through stores like Staples(office supply store). I am not sure if he is still diaper or is now toilet. If diaper you need to bleach the changing table every time. We use latex gloves for dirty diapers. You also need to wash your hands for 30 seconds and his hands if they get in the diaper area. If he is toilet, then many choose to bleach the toilet each time they have D. Remember anything you bleach must be in contact with it for 10 mins to kill c diff. Make sure everyone in the house washes for 30 seconds after going to the bathroom to prevent spreading it around the house. I also bleach the bathtub during outbreak, towels, and underwear. If you hadn't been doing this stuff before sometimes a good thorough clean is best and then you have peace of mind.
As far as having the rest of the family tested, I wouldn't worry about that unless you are having symptoms. Only 3% of the population carries this in normal gut flora but it shouldn't be an issue if you are using good hygiene procedures. It would be very unlikely that someone else is giving this too him. More likely he is just having relapses.
Please know your son will get through this and we are here for how many ever questions you might end up having!
Amanda
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Bobbie
- Administrator
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- Joined: Sat Aug 06, 2005 8:00 pm
Our Best Wishes
momoftwolittleones,
Here is the site's "official welcome."
Standard Introduction
Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics – especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and some of the topics in [i]FAQ – especially Hygiene, Nutrition, & Testing.
The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recovers, however, unless other factors are involved (advanced age, other severe health problems). If antibiotics contributed to your C. diff. be careful about taking them again. (See FAQ-Antibiotics.) Some people can tolerate them without a problem; some develop C. diff. again. (See Dr. Borody’s article.)[/i]
Because of personal problems, I rarely post on this site anymore -- unless I am "touched" by a story. Yours did this for me.
My younger son was born after a high risk pregnancy. (Had lost two babies before this pregnancy.) At the age of 3 mo., he had gastroenteritis -- almost died. The next years were "iffy." When he was l8 mo. old, the lst ped. GI set up practice in Omaha. We were there the 2nd day of his practice. He was helpful. Said, "Get this kid on some food." (His ped. -- a well-known ped. in Omaha had restricted his diet to soybean forumula (later implicated in defects in children who lived on only it), baby food squash, home-made applesauce, & baby food lamb). The ped. GI said he would be OK around the age of 4 because a GI infection in a child so young was hard on the GI tract & it would take years to rebuild. He was right, & around that age, my son improved, but at the age of 4 l/2 he developed C. diff. after 2 courses of Amoxicillin for bronchitis & an ear infection. This was way back in l979 -- when little was known about C. diff. He was the youngest & one of the lst people on oral Vanco. (before this it was only an IV drug.). He had 2 relapses & then was OK. Had C. diff. again about 6 yrs. later but was ill for yrs. with resp. infections & GI problems.
He is now 34 yrs. old. He eats spicy & "junk" foods, smokes heavily, & does other things not compatible with good health. I, too, had C. diff. twice -- many years after my son. (Perhaps genetics? Who knows?)
Hang in there, Mom. If you can survive, he probably will, too. First of all, take care of yourself. One of our moderators (Nancy) lost a grown child & in Compassionate Friends learned "In a threatened plane crash, put on your own oxygen mask first, or you can't help your child put on his/her mask."
Seek all the professional help you can, but always trust your "gut" feelings first. You are the best authority on your child. I hope your son is seeing either a ped. GI and/or an infectious disease doc. Has he seen an immunologist? I would contact National Jewish in Denver at http://www.nationaljewish.org . They have trained nurses on staff who will answer questions for no charge. It is a wonderful, caring place.
Our best wishes to you & your family. You have a lot to handle. Get all the support you can -- from family, friends, this site, doctors, church members. You & your support groups can help you, your son, & your family get through this.
Here is the site's "official welcome."
Standard Introduction
Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics – especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and some of the topics in [i]FAQ – especially Hygiene, Nutrition, & Testing.
The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recovers, however, unless other factors are involved (advanced age, other severe health problems). If antibiotics contributed to your C. diff. be careful about taking them again. (See FAQ-Antibiotics.) Some people can tolerate them without a problem; some develop C. diff. again. (See Dr. Borody’s article.)[/i]
Because of personal problems, I rarely post on this site anymore -- unless I am "touched" by a story. Yours did this for me.
My younger son was born after a high risk pregnancy. (Had lost two babies before this pregnancy.) At the age of 3 mo., he had gastroenteritis -- almost died. The next years were "iffy." When he was l8 mo. old, the lst ped. GI set up practice in Omaha. We were there the 2nd day of his practice. He was helpful. Said, "Get this kid on some food." (His ped. -- a well-known ped. in Omaha had restricted his diet to soybean forumula (later implicated in defects in children who lived on only it), baby food squash, home-made applesauce, & baby food lamb). The ped. GI said he would be OK around the age of 4 because a GI infection in a child so young was hard on the GI tract & it would take years to rebuild. He was right, & around that age, my son improved, but at the age of 4 l/2 he developed C. diff. after 2 courses of Amoxicillin for bronchitis & an ear infection. This was way back in l979 -- when little was known about C. diff. He was the youngest & one of the lst people on oral Vanco. (before this it was only an IV drug.). He had 2 relapses & then was OK. Had C. diff. again about 6 yrs. later but was ill for yrs. with resp. infections & GI problems.
He is now 34 yrs. old. He eats spicy & "junk" foods, smokes heavily, & does other things not compatible with good health. I, too, had C. diff. twice -- many years after my son. (Perhaps genetics? Who knows?)
Hang in there, Mom. If you can survive, he probably will, too. First of all, take care of yourself. One of our moderators (Nancy) lost a grown child & in Compassionate Friends learned "In a threatened plane crash, put on your own oxygen mask first, or you can't help your child put on his/her mask."
Seek all the professional help you can, but always trust your "gut" feelings first. You are the best authority on your child. I hope your son is seeing either a ped. GI and/or an infectious disease doc. Has he seen an immunologist? I would contact National Jewish in Denver at http://www.nationaljewish.org . They have trained nurses on staff who will answer questions for no charge. It is a wonderful, caring place.
Our best wishes to you & your family. You have a lot to handle. Get all the support you can -- from family, friends, this site, doctors, church members. You & your support groups can help you, your son, & your family get through this.
-
momoftwolittleones
- New User
- Posts: 5
- Joined: Fri Feb 06, 2009 12:14 pm
Thanks for all the support and information...it is so crazy all of this. You would of thought all that my son has been thru he would of gotten c-diff a lot sooner, but not like this...well, he is doing well. He still is not showing signs of the diarrhea, and I keep my fingers crossed that he wont. I am giving him yogurt 1-2 times a day (activia brand yogurt) and florastor 2 x a day. I just have to keep my fingers crossed that the symptoms continue to stay away and when we test him again in a few weeks it is negative...
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Sherry
- New User
- Posts: 22
- Joined: Sun Apr 05, 2009 1:43 am
Melissa, I'm sorry to hear about all of your little guy's health issues and now c.diff on top of it! I am also a mother of two little ones, and my 28 month old has had c.diff on and off since January. I'm sure you'll find this support group to be really helpful, as I have.
With Amanda's encouragement ;-) I have become much more diligent about cleaning, but it's not always easy with a little guy. But it did give me some peace of mind to do a thorough cleaning with bleach, clean all his toys, etc. and start fresh. You're lucky he eats yoghurt - my son won't eat it so I've been sneaking it into his cereal, his smoothies, etc. I also started giving him probiotics including culturelle and a kid's chewable called AcidophiKidz, but who knows if it helps. He's had c.diff three times, and each time it happened during another illness, e.g., the flu, bad cold, ear infection. I'm sure it's all related to some degree, so I'm trying to keep him away from places with lots of snotty kids until I'm sure he's in the clear - or at least I wash his hands regularly when we are around high germ places.
I think if he relapses you will know it. My son had 2 relapses and the doctor wanted to wait it out a couple of days before testing, but I insisted on testing him again because there was no doubt in my mind (and I was correct).
Anyhow, I'm sorry you're dealing with this.
With Amanda's encouragement ;-) I have become much more diligent about cleaning, but it's not always easy with a little guy. But it did give me some peace of mind to do a thorough cleaning with bleach, clean all his toys, etc. and start fresh. You're lucky he eats yoghurt - my son won't eat it so I've been sneaking it into his cereal, his smoothies, etc. I also started giving him probiotics including culturelle and a kid's chewable called AcidophiKidz, but who knows if it helps. He's had c.diff three times, and each time it happened during another illness, e.g., the flu, bad cold, ear infection. I'm sure it's all related to some degree, so I'm trying to keep him away from places with lots of snotty kids until I'm sure he's in the clear - or at least I wash his hands regularly when we are around high germ places.
I think if he relapses you will know it. My son had 2 relapses and the doctor wanted to wait it out a couple of days before testing, but I insisted on testing him again because there was no doubt in my mind (and I was correct).
Anyhow, I'm sorry you're dealing with this.
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Sherry
- New User
- Posts: 22
- Joined: Sun Apr 05, 2009 1:43 am
I think when you're the parent of a small child with c.diff. you get pretty up close and personal with their poopy diapers (probably even more so than if it were your own poop!), so it's easy to tell when something has changed. On the other hand, they can't communicate other symptoms so well, which makes it difficult.
Bobbie - have the moderators ever considered a "Kids with C.Diff" section to this site?
Bobbie - have the moderators ever considered a "Kids with C.Diff" section to this site?
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momoftwolittleones
- New User
- Posts: 5
- Joined: Fri Feb 06, 2009 12:14 pm
Thanks for the support and suggestions...so on Saturday I cleaned EVERYTHING in the house with bleach...including every toy and his mattress, changing table, door knobs, bath tub, sinks, everything...it took me ALL day and then I smelled like bleach for another day or two (it was nasty) but it cant get any cleaner than that! Knock on wood, so far Michael has shown no symptoms of C-Diff. He is pooping normally and he is eating well...so for now I will count my blessings and pray to God that it doesnt come back...we will retest him in a few weeks.
I think it would be very helpful to have a toddler/child with c-diff section....
Thanks again!
I think it would be very helpful to have a toddler/child with c-diff section....
Thanks again!
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Bobbie
- Administrator
- Posts: 12688
- Joined: Sat Aug 06, 2005 8:00 pm
Sherry,
See FAQ-Children (including infants) with C. diffile/ Med. Tips.
We've had many parents post whose children/infants have C. diff. Many do better than the adults. One thing to possibly try -- with your ped.'s permission. Culturelle (in one study anyway) seems to work better with children than adults. One other benefit is that is comes in a capsule -- you can open the capule & put the powder inside in food or drink.
My youngest son's ped. GI (who saved his life in l979 in Omaha) now is a rep. for Culturelle (made by CAG). There weren't many probiotics in "them there" days.
I am not endorsing this med. It didn't work for me when I tried it, but it might be worth a try --- but do check with your ped. GI and/or pharmacist first.
See FAQ-Children (including infants) with C. diffile/ Med. Tips.
We've had many parents post whose children/infants have C. diff. Many do better than the adults. One thing to possibly try -- with your ped.'s permission. Culturelle (in one study anyway) seems to work better with children than adults. One other benefit is that is comes in a capsule -- you can open the capule & put the powder inside in food or drink.
My youngest son's ped. GI (who saved his life in l979 in Omaha) now is a rep. for Culturelle (made by CAG). There weren't many probiotics in "them there" days.
I am not endorsing this med. It didn't work for me when I tried it, but it might be worth a try --- but do check with your ped. GI and/or pharmacist first.
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momoftwolittleones
- New User
- Posts: 5
- Joined: Fri Feb 06, 2009 12:14 pm
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Sherry
- New User
- Posts: 22
- Joined: Sun Apr 05, 2009 1:43 am
Bobbie, thanks for the info. I have actually been giving my son Culturelle for the past 6 weeks or so (I put it in his oatmeal), as well as a chewable probiotic called AcidophiKidz (I forget who makes it). And I am planning to buy Florastor - I bought the book "Bacteria for Breakfast" and it seems like Florastor might be the way to go.
The good news is that it has been nearly 3 weeks since my son finished Vanco and so far so good - no c.diff, no colds, no ear infections, etc. The bad news is that today he started with a runny nose and tonight he vomited. His three bouts of c.diff seemed to coincide with other illnesses, so I'm keeping a close eye on him.
momoftwolittleones - I hope your son is still doing well!
The good news is that it has been nearly 3 weeks since my son finished Vanco and so far so good - no c.diff, no colds, no ear infections, etc. The bad news is that today he started with a runny nose and tonight he vomited. His three bouts of c.diff seemed to coincide with other illnesses, so I'm keeping a close eye on him.
momoftwolittleones - I hope your son is still doing well!
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