Ok I'm not even sure this has anything to do with reflux, I just want to know if anyone has ever heard of this. I figured maybe Chako the poop queen :lol: has heard of it....and I know a lot of you have had poo issues.

I got the prelimenary results of Alexys stool sample back today, and the dr said she tested positive for CDIF. What is this? She said it is found in normal peoples stools, but that it can overgrow (as it did in Alexys) and cause diarrhea. And she said it is from taking antibiotics? I am not sure what to think because ALexys has had this diarrhea much longer than she has been on the erthromycin, and they med they use to treat it apparently has major stomach side effects. Has anyone ever dealt with this or heard of it? The ped says Alexys will have to go back on her Prevacid because this med will def make the reflux at its worse. And that even though they found this it might not be what is causing the diarrhea they may have just found it by accident. Now they want to do some intestinal tests of some sort, they are thinking that something is wrong there that is contributing to her reflux. what the heck....I can not win anymore, and I am done trying... it is always something that comes back around to the reflux.

I've never heard of CDIF -- have you googled it? I have heard of the bacteria problems while on antibiotics causing diarrhea (and we've experienced it for sure). Is that what the doc is talking about? We now use Babydopholous when D is taking antibiotics -- it works til he needs the really strong stuff. Can you ask your ped about gentler cures? Does it HAVE to be the one that is going to upset her stomach even more? You guys are on such a good streak -- I'd hate to see it end.

I'm not sure Becky, all she said was that it is a bacteria usually found in the intestines, but in ALexys it has overgrown and I guess the symptom is diarrhea. So maybe it is like a virus? I'm not too sure. I did google it, and basically just found info that it causes diarrhea and is from antibiotics which I already knew. And I found some stuff that said the med they use to fix it can cause A LOT of problems, stomach and low white blood counts. I didnt really have a chance to look too much because Alexys popped another tooth tonight and has been miserable. They are supposed to call back tomorrow and let me know what they plan on doing, after they get the final report. I know, I dont want to see us backslide either, and I really dont want her to go back on meds if she doesnt have to.

I am so sorry that I did not see this post until now!

CDIF is not something I am directly familiar with, but it sounds like candiasis or a yeast problem which is indeed common after antibiotic use. Yeast is naturally found in the body and can go "crazy" and cause multiple problems. This is why I put our family on lactobacillus and acidophilus recently.

The gut bacteria that the ped is talking about may be helicobactor pylori. I have done a lot of research regarding this recentlly since Iain's endoscopy revealed blood in his stomach. It is a bacteria commonly found in the stomach and thrives there if unchecked. Antibiotic use seems to make it go nuts too. It has been known to cause diahrea, peptic ulcers, etc. if untreated. Basically, it is something you want taken care of. There are tests to detect it such as a "breath test" and of course, upper endoscopy. I think blood tests are available, too, but I really do not know. Let me find the blurb I had on it and I will post it.

Leigh

Here's one blurb:

http://www.emedicine.com/ped/topic938.htm

and one on candidiasis:

http://www.emedicine.com/ped/topic312.htm

Or is it clostridium difficile toxin? for CDIF?

http://www.emedicine.com/ped/topic312.htm

If it is what I think it is she will have to go on a "cocktail" of at least two antibiotics and a PPI to get rid of it. I have found information that states immediate family members should be screened and treated as well to prevent re-infection if it is hp.

I will look through my books tommorrow and take a peek. Sorry that I did not see this sooner!

Can you list the symptoms again?

Leigh

Thanks Leigh! I found out a little more today, the bacteria is C.difficile...the only symptom she really had was diarrhea that has been going on for almost four months now. They put her on a medicine called metronidazole (flagyl) which is supposed to be less harsh than the one they were going to use. Although its kind of ironic one of the side effects is diarrhea :roll: Hopefully this will take care of it. We also had to start the prevacid again, and she will be going for another Upper gi and a lower gi on tuesday. They also told us she is contagious which is so helpful now that she has had it for four months :shock:

Oh yikes about having already been contagious for 4 months! I'm glad they're finally dealing with it. The poor little girl, having C Difficile for that long! That's a tough one!

Wow. :shock: It's good to hear that the dr finally figured it out! And "ugh!" to being contagious for 4 months - I mean, good grief!

Hope you start seeing normal, um, stuff soon.

I just realized that I posted the same link twice and did not post the one for CDIF.


http://www.emedicine.com/med/topic3412.htm

According to this, there are indeed other meds that can be used, they are just more expensive. Metronidazole is a med I am very familiar with from an animal point of view and it does indeed work well. It would appear that in Alexys case it is not, therefore another med is needed if it does not kick in. The problem is likely her immune system can not fight it off at all. Perhaps you should talk to your doctor about eradicating it by getting your family checked and medicated for it to prevent a spread back to her. I know it seems extreme, but if it is affecting her this badly the last thing you need is to re-infect her.

The prevacid can cause gastro problems, too. Did she have any trouble wtih it before? I am hoping that she will not have any problems adjusting this time.

As far as it being contagious, it really is. Most people are asymptomatic and do not need treatment. The problem is that it spreads around anyway. I had a raging case of camphylobacter when I was preganant with Iain and I am so very fortunate that we were vigilent enough to prevent the spread to anyone else. Now I know what dysentery is like :shock:

Keep us posted and I hope that this link will be helpful to you.

Leigh

I just read this above link and there is a lot of info for the drugs there. It does state that treatment of asymptomatic carriers is to be considered. Also, there is a lovely simoidoscopy view of it at the end of the article. Yuck.

Leigh

Yes Chako, there is one other med that will treat it, the whatever mycin one. But the dr said that she chose the less harsh one of the two, and since Alexys had such a dramatic reaction to that one there would be no point in trying the other as it will make her just as sick. I am not sure why she didnt mention the other ones, she just said that was it.

I was tested and am negative (somehow) and I am not really too worried about DH since he works ALL the time and doesnt really change diapers. How we did not spread it I'm not sure.

She did mention that until I get to Philadelphia I may want to try some probiotics? I think thats what they were called....over the counter stuff. I am still looking for what may work.

It is great that you are negative. No matter how careful we are, things like that can spread.

I would definately look into acidophilus and bifidus for Alexys. We are using lactobacillis and acidophilus for everyone except Iain here and it is making a difference. Do make sure that you get the human strains and fresh as possible (they should be in the fridge). Do NOT get talked into buying something which has more than one or two strains in it as bacteria will overtake each other and render the effect useless. Bacteria compete, even the beneficial variety. I think that she could use the bifidus and acidophilus combo, but if you find a good health food store you could enquire better. I do have a friend who is wonderful with all this and I have emailed her to see what she would suggest. Let you know if I get a response. The stuff we use is in capsule which can be mixed in with drinks or puree.

From what I can see the metronidazole is supposed to be effective within 3 days, so if you are not seeing a difference then it is time for another drug. It would seem rather ridiculous and dangerous to let her stay "status quo" when her weight is failing so fast until next week. Each day is weight loss and potential dehydration at this point.

Leigh

And I forgot that Becky had mentioned a product called "babydophilos" that she is happy with. I am not familiar with the strains in that product, so hopefully she will post.

Leigh

From what I can see the metronidazole is supposed to be effective within 3 days, so if you are not seeing a difference then it is time for another drug.
Leigh

We cant even get a DOSE into her. We tried 3 times yesterday, and everytime before we even got all the dose in to her she started retching violently and threw up half way across the room. That's when I called the ped about another drug and she said our options are limited, because of her reaction to it. I will def be buying something today, she is starting to get black rings around her eyes and is refusing the bottle. We will prob end up in the hospital if she doesnt eat today.

Amy, Sorry what is going on with Alexys! I have heard of this. I know someone that has worked with a patient who had this. I am glad that you were negative especially now. Hope things improve soon and it can stop what is happening. So if they can stop it, is she not conitgaue(sp) anymore and can it come up? (((((HUGS)))

My experience with the drug is tablet form (and a good size one at that!) and I know that if I do not get it right in the back of the throat that the dog foams like it is rabid and yaks. I have inadvertantly had a taste of it and it is yucky. It is a good drug if you can get it down (at least for pets!) Do you have a liquid form?

They HAVE to get you something else. If she is not getting any dose at all, then they must look at the other drugs regardless of expense. A trip to the hospital may yeild a more willing trial for drugs.

How is her fluid intake? Any change there? I am gathering food is a no go.

Leigh

Yes Leigh, we are on a compound liquid....I had to call 4 pharmacys before I could even find one that made it. It is very thick and gritty...we tried once more again today to get it in her and that will be it. She barfed so hard she choked and turned blue. THe ped called this afternoon and we had a little chat...I asked her about other meds and she said the two are the only ones that she knows of. I also found this website, that says they are the only two approved for use in treating cdif. so I really dont know. http://www.cdiffsupport.com/aboutcdiff.html I am going to try the alternate treatments they have listed. I am guessing when we go to Philadelphia they will prob give her the flagyl intravenously.
Fluids are not going too well today, and solids havnt been happening for days. She has drank 4oz of formula today so far and 3 oz of pedialyte. I know what signs to look for and so far I think she is ok, she is still drooling. She has had this for four months almost so I am guessing they are not worried about a few more days...even though it is kind of freaking me out. Thanks for the help, this is getting frustrating!!!!!!!!!

Yes she has had it for four months, but she has obviously had problems fighting it off and is losing the battle. In theory a few more days will not hurt unless she stops intaking enough and becomes dehydrated. My opinion is that they can give you a few days of drugs to start her recovery now since she has lost so much weight in such a short time.

I looked at the site and it is like the one I posted. It seems that there are only two that are approved for pediatrics, but there are some other ones out there as well. I'll bet that the vancomycin is going to be the drug of choice next week for her as it is used when metronidazole is unsuccessful. It cites cost as the main factor for using metronidazole first as the vancomycin costs about $150 for a ten day treatment... Wow. I will route around to see what the drug is made of for texture and taste.

How do they know that she has had it for four months, by the way?

I am sorry to hear her intake is low, but I know that you are watching her and know what to look for. Nervewracking, isn't it?

Leigh

Thanks Chako, I appreciate the research and support. And yes, it is becoming totally nervewracking. I have been staring at her soft spot for hours imaging I can see it sinking in :roll:

The ped called tonight to check up on Alexys, and she told me she called in the other prescription but that the pharmacy said they do not regularly carry it and it wont be in until next week. She called a few others and none of them had it either. She said she is not hopeful for this med because it is even harsher than the flagyl but we can try it. And actually it is cheaper, my insurance didnt cover the flagyl and we had to pay 30.00 for it, this med is covered and only requires a copay of 15.00.
We are leaving tomorrow so I doubt we will get it before then anyway, but I am sure when we see the GI we will get something right away. I am hoping anyway.

It is wonderful that your ped calls to check in. Mine did from time to time for Iain and oddly, the pharmacist as well.

I am surprised about the vancomycin being less expensive as everything I have come accross says otherwise. Oh, well. The important thing is if it works. Now you will wait until the hospital for meds? Or have you tried the homeopath route with the bacteria?

It is not funny, but I remember sitting and staring at Iain's fontenelle and watching the pulse until my eyes crossed over. I ended up reverting back to the other signs of dehydration that I use (skin test, tears, etc) instead as it was less nervewracking for me.

Sorry, but I have not researched vancomycin yet. At this point I guess it is all up to the GI at the hospital. They are admitting her, correct?

I am hoping that today was a better drinking day for her.

{{{hugs}}}
Leigh

It is more expensive, but it is covered under my insurance so I do not have to pay anything but a copay.

I already posted elsewhere, but again I am thinking of you and Alexys with your hospital trip.

Wish I could have been more help and pray that the doctors WILL be!

Leigh

Chako, after she is off the antibiotics for this, what should I be giving her as far as pribiotics? The GI told me there is a 80% chance that she will get this cdif again within 6 weeks, as it is VERY hard to totally clear up. With all the options out there I have NO clue what to put her on, and the GI agreed she should be on acidopholus or something of the sort, although wasnt very helpful as far as what to use. I am tired of poop and dont want this coming back.

Yikes! Back in 6 weeks? Um, no. We shall load her up with tons of good bacteria to compete for her gut space! I am sure that acidopholus and lactobacillis is the stuff, but bifidus rings a bell, too. I have emailed a friend who does nutrition and is very knowledgeable about the bacteria as she was the one who got us on it and Curran is having the occassional solid or formed poop now! Great, it only took nearly 2 years... Sorry, I digress yet again.

If I hear back from her tonight I will email you with the info. If not, I will see her tomorrow as I am sure she will be coming by where I work in the afternoon. I know how to knock out helicobacter pylori, not CDIF unfortunately and I want to make sure that what is suggested will work for her. I also know that you have to watch for competition between the loads of good bacteria and the combinations you use as they can compete with each other and not work on the "bad bacteria" space.

I will go and look for the antibiotics she is on again and re-email her with them in case that will make a difference.

Leigh

Thank you soooo much!! I have asked the ped but she is pretty much clueless. Ah I guess I'll let her slide on this one since she is on the ball with everything else.

I am still dealing with the poops, since one of the side effects of the flagyl is diarrhea :roll: I cant wait until I can go through a day without changing 10 outfits soaked with poop!!!

I am still waiting for Louise to get back to me about this. She is to call me tomorrow as she was not around today as I thought she would be, but said she would call after she has a chance to look up CDIF and the best combo of bacteria to fight it. Like me, she is better with other gut bacteria.

Will email you tomorrow with it.

Leigh

Ok, here it is!

She says to get Acidophilus, lactobacillis, and bifidobacterium. They should be all live and human strain. If you can, try not to get them all in one container as they will compete wtih each other and that defeats the purpose. She says that you would have to find someone there who is versed with the products offered where you are to get best selection. You want fresh and kept in the fridge so be sure to check the dates. She also reccommends brewers yeast as it can actually be an appetite stimulant and help with the CDIF. Also, get live youghurt if they offer it where you are.

You can not seemingly overdose with it, but ask your specialist there for something for young children. As you are trying to overtake bad bacteria she reccommends a good 3 to 6 month run with this course to ensure that the gut flora is restored and to do a run of a month every time she has antibiotics to prevent this again. Or better yet, just keep her on it period.

How is she doing now? Less sleepy I hope? On one hand I want to hear that she is tearing your place apart and on the other hand I hope that she is not so that you can rest up. Hard call... :wink:

If you have any questions, please do not hesitiate to ask.

Leigh

Nearly forgot... she also said that there is a liklihood that Alexys will be status quo for a little while until the bacteria starts doing their job and then about 3 to 5 days after starting treatment there is a good chance that she may start feeling lousy again as she may experience some gastro upset as the bacteria compete in the gut. Also, if she has yeast problems the bursting yeast cells will cause the same effect. I have heard of that before and we experienced a bit of a bump as we all adjusted to our doses of bacteria, but nothing major. Then she will be well on the path to recovery and if you keep up with the treatment it should keep the CDIF at bay or at least controlled.

Leigh

There is a lady at Alexys ped's office that has gone through this with her son, numerous times. She has recommended Florastor otherwise known as Sacc. Boulardii . She said she has had great success with it, and that it works really well... Its expensive though. I havnt had time to research it yet, but I will have to do that soon. Have you ever heard of it?

Thanks for helping me out Leigh. We are having quite a time of it right now, but hopefully things will get better soon. It helps to have the support that I get from you and the people on this board.

I really wish that I could be of more help for poor Alexys! :oops:

Is that a saccharide? I really do not know, but give me the weekend and I will find out! :)

Tomorrow is a bit of a wash for me as we are having a party for my eldest son. His birthday is the 13th, but he wanted to have a party with friends, so tomorrow is it. My, but they grow so fast.

Is Alexys getting any better at all? How long before they expect improvement?

Leigh