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My teen daughter has PANDAS and has been doing really well. She is on PenVK twice a day! Recently, she began a community service project with her friends, working at a local hospital. (I wasn't wild about this idea, but she really wanted to and all her friends chose this place as well.) She basically visits with some of the people in the wards. Last week, she was playing cards with an older woman. This week, when she showed up, the woman's room had a Do Not Enter sign, and people were donning gloves and gowns when they did need to go in (doctors, nurses). When a member of the family showed up, my daughter inquired, and the family member told her the woman had c difficile and was extremely contagious (and told her she had been tested last week on the day my daughter was there (Tuesday afternoon)!) I have searched the internet just enough to get really worried -- evidently c diff is more likely caught if you take antibiotics! Our doctor -- usually a gem -- said there was nothing I could do, and that "there was no incubation period." (I guess some get the spore but don't show symptoms for months?? Not sure about this.) Does anyone know anything about c diff? Any information would be helpful, as I am pretty much freaking out!

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Hi Emma1,

did your dd ever have IVIG? did she get better when she hit puberty?

 

I just checked wikipedia... http://en.wikipedia.org/wiki/Clostridium_difficile I don't think I'd be worried about your dd being prone to C. Difficile since she is just on Pen VK which is narrow spectrum...certain broad spectrum antibiotics seem to be more of a problem, combined with living in a nursing home, being a hospital etc. I don't know if taking of probiotics (and/or Kefir) would help prevent a problem as well?

 

I agree with you...I wouldn't be wild about my PANDAS dd hanging out in a hospital or nursing home. On the other hand, you can't keep them in a bubble their whole life.

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Emma,

Only thing I can tell you is that I had this about 6 years ago. I recall the doctor asking me if I had taken alot of antibiotics as that made people more "prone" to it, but I did not. I had been in Mexico about two weeks prior to that so don't know if that's how I got it. But my symptoms were flu-like with bloody diareah, so I was hospitalized so they could do testing to see what bacteria I may have got, but it turned out all they found was the c.diff. I got an IV of flagyl, I think. But I think the reason people who work in hospitals get it is because they are exposed to the patients who get it, but I don't recall me being quarantined or anything. I was fine after a few days.

 

I suppose you are worried that it may cause a relapse of her symptoms? Maybe you could up her probiotics for now, and just watch for symptoms of weakness or diareah. good luck, I'm sure she'll be okay. how has she been doing otherwise lately?

 

Faith

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Emma,

I am an oncology nurse and most of our patients on our floor have C.dif - it's because they are on frequent antibiotics and their absolute neutraphil count is also low. The reason that they have people glove and gown is not usually to protect the family members or the staff that enter the room - it's to avoid having it spread to the other patients on the floor whose immune systems are suppressed. With PANDAS kids the immune system is overactive (not underactive).

 

All of us have C. dif in our gut at all times. The reason that we're not sick from it is because usually it's in balance with the other bacteria present in the gut. The problem comes when you take antibiotics which kill off not only pathogens, but the good bacteria as well. That leaves an open space ready to be occupied by opportunistic bacteria (and c.dif just happens to be the one that really proliferates in a situation like that - along with yeast).

 

As long as your daughter's white blood cells are within a normal range, I wouldn't worry about her "catching" anything from these patients. The only problem she might encounter is if she's on long-term antibiotics and she starts having an overgrowth of her own c-dif (this would have absolutely nothing to do with other c-dif positive people she comes in contact with). If her gut bacteria is out of balance, you can either have an organic acid test done to confirm this, which would cost you a couple of hundred dollars, or you could assume that she has the problem and start giving her kefir on a daily basis which would regulate everything within a month or two. By the way, yogurt is not quite as effective. Another good probiotic to give along with that (only necessary during the time of an exacerbation) is s. boulardii. Pat

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I was just going to add that I have been trying to prevent getting this bacteria overgrowth in my gut b/c I've been on broad spectrum antibiotics for 2 weeks. Basically, I've been taking Primal Defense(a probiotic) and eating lots of kefir and yogurt. I'm also staying away from complex carbohydrates like fruits and veggies. I'm eating very plain foods, bananas, applesauce, etc hoping to avoid the bacterial and yeast overgrowth that can occur when on antibiotics. So, if you are concerned I'd probably just change the diet a bit and up the probiotics.

 

B

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My son has been on Omnicef and antibiotics for awhile. For the past several months he is having bowel issues. He can't make it to the toilet on time and makes such a mess in his pants. He is 7. His bottom is always bothering him and he picks at it through his pants. No Dr. has been able to help us about it they tried worm meds twice. I am using Kefir, and probiotics daily. Do you think it could be related to the antibiotics? What else can we do? He is also on Celexa since May and Abilify since last jan 2008. I don't think it would be the meds bothering him since he started this butt picking before the Celexa and was on the abilify before also. I am getting very frustrated at a seven year old messing themselves everyday and walking around grabbing in their bottom. Help!

 

Michele

I was just going to add that I have been trying to prevent getting this bacteria overgrowth in my gut b/c I've been on broad spectrum antibiotics for 2 weeks. Basically, I've been taking Primal Defense(a probiotic) and eating lots of kefir and yogurt. I'm also staying away from complex carbohydrates like fruits and veggies. I'm eating very plain foods, bananas, applesauce, etc hoping to avoid the bacterial and yeast overgrowth that can occur when on antibiotics. So, if you are concerned I'd probably just change the diet a bit and up the probiotics.

 

B

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My son has been on Omnicef and antibiotics for awhile. For the past several months he is having bowel issues. He can't make it to the toilet on time and makes such a mess in his pants. He is 7. His bottom is always bothering him and he picks at it through his pants. No Dr. has been able to help us about it they tried worm meds twice. I am using Kefir, and probiotics daily. Do you think it could be related to the antibiotics? What else can we do? He is also on Celexa since May and Abilify since last jan 2008. I don't think it would be the meds bothering him since he started this butt picking before the Celexa and was on the abilify before also. I am getting very frustrated at a seven year old messing themselves everyday and walking around grabbing in their bottom. Help!

 

Michele

I was just going to add that I have been trying to prevent getting this bacteria overgrowth in my gut b/c I've been on broad spectrum antibiotics for 2 weeks. Basically, I've been taking Primal Defense(a probiotic) and eating lots of kefir and yogurt. I'm also staying away from complex carbohydrates like fruits and veggies. I'm eating very plain foods, bananas, applesauce, etc hoping to avoid the bacterial and yeast overgrowth that can occur when on antibiotics. So, if you are concerned I'd probably just change the diet a bit and up the probiotics.

 

B

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My son has been on Omnicef and antibiotics for awhile. For the past several months he is having bowel issues. He can't make it to the toilet on time and makes such a mess in his pants. He is 7. His bottom is always bothering him and he picks at it through his pants. No Dr. has been able to help us about it they tried worm meds twice. I am using Kefir, and probiotics daily. Do you think it could be related to the antibiotics? What else can we do? He is also on Celexa since May and Abilify since last jan 2008. I don't think it would be the meds bothering him since he started this butt picking before the Celexa and was on the abilify before also. I am getting very frustrated at a seven year old messing themselves everyday and walking around grabbing in their bottom. Help!

 

Michele

I was just going to add that I have been trying to prevent getting this bacteria overgrowth in my gut b/c I've been on broad spectrum antibiotics for 2 weeks. Basically, I've been taking Primal Defense(a probiotic) and eating lots of kefir and yogurt. I'm also staying away from complex carbohydrates like fruits and veggies. I'm eating very plain foods, bananas, applesauce, etc hoping to avoid the bacterial and yeast overgrowth that can occur when on antibiotics. So, if you are concerned I'd probably just change the diet a bit and up the probiotics.

 

B

My naturopath said to try goats milk yogurt instead of cow's milk. Have you tried to keep his diet really simple? Maybe just switch to rice pastas, rice milk, and keep him off of veggies and fruit b/c they really can help feed the 'runs'. I have IBS so I know that when my GI system is going to be stressed that I have to eat small bites throughout the day and I beef up my defenses with applesauce, bananas, kefir smoothies(which I drink just a little bit a day b/c it has sugar), etc. I stay away from ALL sugar. Actually, I've lost 8 pounds since starting the antibiotics b/c of diet changes and b/c they suppress my appetite, too!

 

B

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He won't eat applesauce or bananas or yogurt. I will try rice and toast. Could he be getting IBS? I am wondeing if it can be a side effect of the antibiotics? Aren't others seeing this on longterm antibiotics? I feel so bad for him. And he is irritated so he rubs against things like the floor. Yesterday I found poop stains on his carpet, of course he soils his underwear and shorts daily. I will try to watch his diet better. I will try to get him to eat les sugars and fats. He is so skinny. 7 and 47lbs. He does eat alot more now. Maybe the runs are from the drug combo of the celexa, abilify and omnicef. I don't want him to get IBS disease from these meds I am giving and the Dr's are no help. I feel just awful if I am doing this to him.

My son has been on Omnicef and antibiotics for awhile. For the past several months he is having bowel issues. He can't make it to the toilet on time and makes such a mess in his pants. He is 7. His bottom is always bothering him and he picks at it through his pants. No Dr. has been able to help us about it they tried worm meds twice. I am using Kefir, and probiotics daily. Do you think it could be related to the antibiotics? What else can we do? He is also on Celexa since May and Abilify since last jan 2008. I don't think it would be the meds bothering him since he started this butt picking before the Celexa and was on the abilify before also. I am getting very frustrated at a seven year old messing themselves everyday and walking around grabbing in their bottom. Help!

 

Michele

I was just going to add that I have been trying to prevent getting this bacteria overgrowth in my gut b/c I've been on broad spectrum antibiotics for 2 weeks. Basically, I've been taking Primal Defense(a probiotic) and eating lots of kefir and yogurt. I'm also staying away from complex carbohydrates like fruits and veggies. I'm eating very plain foods, bananas, applesauce, etc hoping to avoid the bacterial and yeast overgrowth that can occur when on antibiotics. So, if you are concerned I'd probably just change the diet a bit and up the probiotics.

 

B

My naturopath said to try goats milk yogurt instead of cow's milk. Have you tried to keep his diet really simple? Maybe just switch to rice pastas, rice milk, and keep him off of veggies and fruit b/c they really can help feed the 'runs'. I have IBS so I know that when my GI system is going to be stressed that I have to eat small bites throughout the day and I beef up my defenses with applesauce, bananas, kefir smoothies(which I drink just a little bit a day b/c it has sugar), etc. I stay away from ALL sugar. Actually, I've lost 8 pounds since starting the antibiotics b/c of diet changes and b/c they suppress my appetite, too!

 

B

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wow michele

 

I can't believe your docs aren't doing more. Certainly there are more tests they could do to determine the cause of the runs? Have they tested him for giardia? http://www.cdc.gov/ncidod/dpd/parasites/Gi...sht_giardia.htm or other parasites? Surely there is more that they could do instead of just shot-gunning him with some worm meds.

 

And could you try switching to pen VK temporarily to see if that helps?

 

We have not had any problems with dd and being on Azith. and diarrhea.

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Pat, I am going to ask a question which I am sure is stupid, but here goes. . .If everyone has c difficile in their gut at all times, how is a c difficile stool test ever negative? It would seem to me that all tests would come back positive, but of course, I know that is wrong!

 

My daughter has been doing well. I am concerned about an increase in symptoms if she gets ill with anything (in the past, any illness seems to cause us some problems, not just strep). But, the relatives of this woman were quite concerned (they were all being tested, I think) and honestly, the gloves and gowns made my daughter concerned (especially since she was told not to go in as her visit was optional).

 

The last couple of days her stomach has been acting up a little, but I am not sure why. It could, I guess, be c diff, or it could be the fact that she is really worried about the c diff, or it could be the Culturelle I started her on (she hadn't been taking it until about four days ago, and she started feeling not-so-fabulous yesterday). I left her on her "regular" probiotic, and stopped the Culturelle to see if that makes a difference.

 

Thanks to everyone who is trying to help me with this. Michele, that sound awful, and must make his life miserable too! Your sweet son so deserves better!!! I wanted you to know that with the Pen VK, my daughter had no issues. It is a more narrow spectrum -- again, don't exactly know what that means, but perhaps that makes a difference? My doctor has been advocating going off the antibiotic, but I haven't agreed to that yet. I may need to seek out a specialist (we consulted an infectious disease guy, and honestly, I was kind of surprised at how little in-depth info he seemed to know).

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Emma,

I hadn't used Culturelle for awhile. I just got back from getting it at Walgreens. Maybe it will help. I am using Primodophilus and Kefir with it. If it doesn't help we will have to try to stop the antibiotics. Maybe I slacked on the probiotics for awhile and that is where this bowel problems came from when we added new meds. As ususal it is hard to know what is causing what.

 

I hope your daughter is doing fine. I can understand your concern since she has been doing so well.

 

Michele

Pat, I am going to ask a question which I am sure is stupid, but here goes. . .If everyone has c difficile in their gut at all times, how is a c difficile stool test ever negative? It would seem to me that all tests would come back positive, but of course, I know that is wrong!

 

My daughter has been doing well. I am concerned about an increase in symptoms if she gets ill with anything (in the past, any illness seems to cause us some problems, not just strep). But, the relatives of this woman were quite concerned (they were all being tested, I think) and honestly, the gloves and gowns made my daughter concerned (especially since she was told not to go in as her visit was optional).

 

The last couple of days her stomach has been acting up a little, but I am not sure why. It could, I guess, be c diff, or it could be the fact that she is really worried about the c diff, or it could be the Culturelle I started her on (she hadn't been taking it until about four days ago, and she started feeling not-so-fabulous yesterday). I left her on her "regular" probiotic, and stopped the Culturelle to see if that makes a difference.

 

Thanks to everyone who is trying to help me with this. Michele, that sound awful, and must make his life miserable too! Your sweet son so deserves better!!! I wanted you to know that with the Pen VK, my daughter had no issues. It is a more narrow spectrum -- again, don't exactly know what that means, but perhaps that makes a difference? My doctor has been advocating going off the antibiotic, but I haven't agreed to that yet. I may need to seek out a specialist (we consulted an infectious disease guy, and honestly, I was kind of surprised at how little in-depth info he seemed to know).

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Hi Emma,

If your dd is doing well on Pen VK, it seems that you would be taking a big risk (and have little to gain) by taking her off the pen. Just my opinion. How old if she now? Per Sue Swedo (DAN! broadcast posted by peggysue) we don't really know how long these kids need to be on prophylactic abs. If you base it on RF, they kept upping the age for that, first 18, then 21, then lifelong....so I wouldn't be in a rush to take her off.

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Emma,

You remember Alyssa the twenty one year old girl who has had PANDAS since age 10? She has posted here before. I talked to her and her mom. She had a relapse this year with a sinus infection. She has still been on azith for many years. It was her first big episode since she did alot of treatment years ago such as IVIG, and steroids at high levels. So I wouldn't be in a hurry to take her off of them yet. Especially if she is in remission. You never know. Better safe then sorry.

 

Pat, I am going to ask a question which I am sure is stupid, but here goes. . .If everyone has c difficile in their gut at all times, how is a c difficile stool test ever negative? It would seem to me that all tests would come back positive, but of course, I know that is wrong!

 

My daughter has been doing well. I am concerned about an increase in symptoms if she gets ill with anything (in the past, any illness seems to cause us some problems, not just strep). But, the relatives of this woman were quite concerned (they were all being tested, I think) and honestly, the gloves and gowns made my daughter concerned (especially since she was told not to go in as her visit was optional).

 

The last couple of days her stomach has been acting up a little, but I am not sure why. It could, I guess, be c diff, or it could be the fact that she is really worried about the c diff, or it could be the Culturelle I started her on (she hadn't been taking it until about four days ago, and she started feeling not-so-fabulous yesterday). I left her on her "regular" probiotic, and stopped the Culturelle to see if that makes a difference.

 

Thanks to everyone who is trying to help me with this. Michele, that sound awful, and must make his life miserable too! Your sweet son so deserves better!!! I wanted you to know that with the Pen VK, my daughter had no issues. It is a more narrow spectrum -- again, don't exactly know what that means, but perhaps that makes a difference? My doctor has been advocating going off the antibiotic, but I haven't agreed to that yet. I may need to seek out a specialist (we consulted an infectious disease guy, and honestly, I was kind of surprised at how little in-depth info he seemed to know).

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Pat, I am going to ask a question which I am sure is stupid, but here goes. . .If everyone has c difficile in their gut at all times, how is a c difficile stool test ever negative? It would seem to me that all tests would come back positive, but of course, I know that is wrong!

 

My daughter has been doing well. I am concerned about an increase in symptoms if she gets ill with anything (in the past, any illness seems to cause us some problems, not just strep). But, the relatives of this woman were quite concerned (they were all being tested, I think) and honestly, the gloves and gowns made my daughter concerned (especially since she was told not to go in as her visit was optional).

 

The last couple of days her stomach has been acting up a little, but I am not sure why. It could, I guess, be c diff, or it could be the fact that she is really worried about the c diff, or it could be the Culturelle I started her on (she hadn't been taking it until about four days ago, and she started feeling not-so-fabulous yesterday). I left her on her "regular" probiotic, and stopped the Culturelle to see if that makes a difference.

 

Thanks to everyone who is trying to help me with this. Michele, that sound awful, and must make his life miserable too! Your sweet son so deserves better!!! I wanted you to know that with the Pen VK, my daughter had no issues. It is a more narrow spectrum -- again, don't exactly know what that means, but perhaps that makes a difference? My doctor has been advocating going off the antibiotic, but I haven't agreed to that yet. I may need to seek out a specialist (we consulted an infectious disease guy, and honestly, I was kind of surprised at how little in-depth info he seemed to know).

 

 

Emma,

From what I understand, the small amount of Cdif that everyone has in their gut is generally not enough to show positive in a stool sample. However, when you are on long-term antibiotics it wipes out a lot of the good with the bad and when there are empty spaces, the cdif seems to be the one that really takes over (along with yeast). The reason that c-dif is so dangerous in the hospital setting is that there are many patients who are immune suppressed and they are almost sure to be infected by c-dif positive patients if staff is not careful in gowning & gloving. On our floor we usually don't make the visitors gown & glove unless they are planning to go into common areas that other patients will use (like the galley, patient/visitor lounge, etc). In that case they will need to gown & glove in the room and make sure to discard those items in the room before they leave the room to use those common areas. If your daughter is concerned, it's pretty simple to do a stool collection for c-diff, but I wouldn't bother until she had consistent diarrhea for several days. Again, if her white count is normal, she probably wouldn't be that susceptible. Pat

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