911RN

My DS was on it about a year several years ago. Seemed to work the first 6-8 months then effects wore off. Gained weight and just made him too tired. Falling asleep in class daily at 2pm for 1/2 hour to a hour. Had needless sleep study thinking he had narcolepsy! He did not...stopped Intuniv and daytime falling asleep went away. Intuniv is only approved by FDA for use for 12 weeks (I think)...check the manufacturer website. It has not been studied in children beyond that time which is just foolish. If indicated mainly for ADHD (which it is)...what child is only going to need ADHD "help" for 12 weeks????!!!! It did seem to help with tics and attention but the other side effects (for us) were not worth the gains. Have followed lots of posts and blogs with parents whose children were on Intuniv (long acting form Tenex) and results were all similar. Most abandoned it over time. Seems like folks have stayed with Tenex (short acting form) longer than Intuniv from my reading experiences. We have never tried Tenex. Our Neuro is recommending Marinol for my DS tics (he s nearly 13). I have not agreed yet...thinking about trial this summer when school is out. I am a bit concerned with appetitie stimulating effects--further weight gain and sleepiness. My DS is chunky and does not need to gain anymore weight. Not obese (yet) but could head in that direction with any nudge. Neuro claims it has been a life changer for some of his chronic tic children. States they do not get "high" but the tics go away. My DS does not take anything for tics either...his are mainly vocal. Few motor tics. His tics don't seem to bother him as much as it they do others so I try to keep that in perspective. I am treating the child or others?? However, it does have an impact on his social abilities. He takes low dose SSRI (Zoloft) for minor anxiety/depression/OCD which has made a positive impact. Lamictal for underlying abnormal EEG which we are slowly weaning. That's it...a few vitamins. Our children are similar in ages. Maybe Marinol is option for your DD also?? Good luck with whatever you decide...sorry, not to be more positive. That was our experience with Intuniv.

Amy, Interesting. My grandfather had Parkinson's. My son has pallilalia. Same speech issues as those above--difficulty with speech expression (at times). Starting same sentence over and over until he finally spit it out or got frustrated and gave up. Much improved over the years. Had word finding issues. Dysphasia/Aphasia. Also diagnosed with LKS, CAPD which we seem to have 'recovered' from for the most part. He became mononsyllabic about age 4 and nearly lost all speech at age 6. In a child that had developed normal speech and vocab up until that point. Has had near miraculous return through years of meds, speech therapy and supportive IEP/academics. Suspect PANDAS...much improved. Still has some compulsive tics and quirky, non debilitating OCD. All improving the older he gets-- nearly 13 now. So, does this predict a foreboding he may have Parkinson's later in life??

If your child is not allergic to Penicillin....I would suggest a shot of Bicillin LA or CR. I have seen this knock out Strep when nothing else would.

Flu vaccines are manufactured on a "best guess" scenario each year by the CDC and WHO. They study the strains that are prevalent around the world and put the strains they think are going to be around in the current year vaccine. It takes a long time to grow viral cultures in the egg agar to manufacture enough vaccines for folks so they have to do this 6+ months or so ahead of when the vaccines will be needed. Mostly, they get it right but sometimes new strains arrive that can make the current year vaccine less effective for certain people for certain strains of influenza. That's what happened with the H1N1 several years ago and why they offered a separate vaccine for just THAT the year that happened. It was a very virulent strain and it was killing the young and the old in record numbers. There is mounting data that people that have obtained the flu vax year after year somewhat "protect" themselves better during the years that the flu vax is "wrong" since they may have been immunized in previous years against the particular strain that may be rearing its' ugly head this year. Even if the viral strain is a bit mutated...which, they tend to do over time. Viruses are smart and mutate to overcome our body defenses against it. If you have been immunized against a particular strain in previous years...your body recognizes it during an exposure and essentially you have immunity. Your body mounts the appropriate immune response. If the virus has mutated a bit---body still recognizes some of the core components of the virus and tries to ward it off. You may feel a little under the weather but seldom succumb to a flu blown influenza illness. Without knowing more on your fellow teacher...there are many factors to developing immunity to a vaccine. ANY vaccine, not just flu.Did she get sick after the flu vaccine or she got vax and later caught the flu, anyway, with atypical symptoms? If the former then she had a huge immune, atypical response to vaccine. If the latter, then the vax was ineffective and she suffered many of the "complications" of influenza. Dehydration from fever can typically cause palpitations etc. The older the person- the more risks- there is underlying disease in organ systems and they are less able to handle the "stress" of such a serious illness. I would be reluctant to say her response was from actually receiving a vaccine with strains that was not the "one" she may have been actually exposed to...I have heard nothing in the medical world to support that theory. I have heard mainly that some folks got flu vax and some of the viral strains "out there" were not in the vaccine this year so... people still got sick. Why are some sick and not others if they all rec'd the same vaccine?? Most likely due to past exposure either naturally or via previous immunization with flu vax. This year's strain may have been put into a previous year's serum. Those folks were protected. Or, you may have actually had the flu with this years' strain. I believe they said the same virus "out" this year is same as one encountered in 2006 or 2009. Can't remember now which year. If you had the actual flu exposure or vax that year- you would be protected. If not... you will be sick. That's where that 50%-60% "effectiveness" number is coming from. The old(er) and the young have a "less intelligent" and somewhat more compromised immune systems and response to vaccines. Or, to the actual viral exposure. And, the older we get- our titers fall to what we have been exposed to so body is less able to recognize and fight off offending pathogen. There are many (reported on this forum) that have been fully immunized to certain agents and never develop immunity such as Hep B etc. Why this happens has never been fully understood??? Depends on the health of the individual, pre-existing disease processes, medications, their unique immune system and a host of other factors. Low Vitamin D has recently been implicated in our ability to ward off infection. Used to be thought that the reason that folks got sick in the winter was because we were more clustered indoors in the cold and swapping germs. Now, they are thinking that low vitamin D, from lack of sun exposure, in the winter, is more to blame than anything.Take a daily supplement of Vitamin D in the winter and you will stay healthier or get outside daily for 10 min or longer. That's the latest...next year they will say too much Vitamin D causes sickness

'Mrs. X, I see you have signed a religious exemption form. Could you state the name of that religion?' 'PANS. It's called PANS.' 'I'm sorry, excuse me?' 'PANS. Like pots and pans. PANS. It is a higher power that has ruled my life, and in fact, I've tithed my entire savings account over to it.' (sorry, kind of losing it) You may have been losing it but I was loving it! Thanks for my out loud chuckle of the day My issue is not so much an anti vaccine stance. My children are fully immunized. Mine is a "this is America (or,at least, it used to be) and I have free will and free choice to do with my body what I choose." Or, in the case of my children...if I have to sign consent then I must give informed consent. And, if my informed consent told me NOT to do it then that is my free choice to do so. When signing any consent- there are risks- or else, you not be signing consent in the first place!! I have always been vaccinated for flu for years as a nurse. I work in an ER...I have constant exposure all winter. Anyway, the years I did not get flu vaccine- I got the flu. Years I did- no flu. It was a no brainer. I have no issues with the vax, I don't want to be sick with the flu for a week. Once you have ever had real influenza- you really don't want it again. At least, I don't! This year, they made the vax mandatory for all employees. Only exemptions were medical for allergy/disease process and few religious. These exemptions had to go through a panel for approval and not all were approved. If not approved and did not get flu vax- you were terminated. As I said I get flu vax each year without issue... voluntarily! But, I actually had a problem with being MADE to get it. This is a self rights/free choice/free will issue with me. Call me a Libertarian or whatever term fits. I'm paying welfare/food stamps/disability/Medicaid for heroin addicts that "chooses" to inject themselves with an addictive, dangerous drug and comes to the ER with the flu. Meanwhile, I will lose my job if I don't "choose" to get a mandatory flu vax to "protect the health of our patients." Yeah, right. Where's my free choice?? As for any religious exemption for my child...we follow the Church of Ticology (instead of Theology:)

Any child that has had "normal" growth and development then falls off the bell curve and also lacks the ASD hallmarks as you describe deserves a more extensive work up. From my prior experience with my son...I would suggest you insist on an overnight 24 hour EEG and a MRI. My son has Landau Kleffner Syndrome (LKS) that went undiagnosed for 4 years. A simple EEG early on would have detected this and allowed for better treatment at the onset and less permanent "damage" so to speak. My son also has many subtle ASD characteristics but he was ADOS negative not qualifying for that diagnosis. He also has PANDAS characteristics with strong Strep history (learned much later), however, he lost speech gradually and persistently from age 4 to age 6 due to abnormal nighttime spike and wave seizure activity in the temporal lobes. He had never had a seizure.This was not diagnosed until age 8. He also had CAPD as a result of his LKS. He has improved on anti seizure medication and a host of other treatments to support him academically. Understand, this was a child that was on NOBODY's radar for issues that gradually went on EVERONE's radar for issues. He had absolutely no issues until about age 4. He had developed normal speech and achievement of developmental milestones that was actually ahead of peers and nearly lost it all. I am fortunate he has the ability to speak at all today and has recovered as well as he has. Much was missed and rationalized away by very experienced physicians and myself (a nurse) when more should have been done much earlier. Give him time, he'll catch up, let's just wait and see, he's OK, he's just a little quirky, he might be a little ADD, ....no, he had a major, rare problem!! This could have been picked up by very inexpensive, non invasive test- an EEG. As a mother, you want to believe everything is OK and accept the advice that is given to you by medical professionals even when your gut is telling you otherwise. No mother wants to believe there is a problem with there children at this age when there has not been one up until this point. LKS has auto immune component similar to PANDAS. I consider my son to have LKS first, CAPD second (much improved), PANDAS with tics and OCD, third. The tics and OCD could also be just a sequela or remnants of his LKS, however, with the strong Strep history and other strong factors (dilated pupil history, loss of writing and math skills, neuro typical brother that suffered severe separation anxiety after strep)- I tend to discount that. Most important, the one link between all these diseases is the auto immune origin and abnormal brain, neurological response. There are theories of links to development of his diseases after a viral and bacteria insult which he had and fits with the timeline of his decline. Fight for some additional testing- get an EEG for sure!

Lions and tigers and bears..Oh, MY!! This has been a fascinating discussion throughout. Somehow, I think I should have paid more attention in my Advanced Bio or Micro classes in college I, like you LLM, just want someone to tell me what to do!! For years, I have tried to "put the pieces" of my son's puzzle together trying to use some of these "theories" as Kim rightly suggests that they are. I would look to symptoms trying to see if they were low dopamine, high dopamine etc. and then see his response to certain medications and if adverse....try to work back from that. Have dappled with supplements to see if I could cause a more natural increase/decrase in neuro transmitters to improve the attention and focusing picture, diminish the tic picture etc. None of it really ever seemed to work. My grandfather had Parkinson's so I keep that in mind for family genetics yet my aunt and her entire family (4 grown children) suffer from severe Restless Leg Sx...seems like opposite sides of the coin. For starters, we lack any kind of good testing or data to really form a baseline from where to start and go forward. Sent blood for MC testing and project was completed. Blood was never tested. Sitting in refrig somewhere in OK, I suppose. Or, thrown away by now? We treated presumptively for 90 days with high dose daily antibiotics and many of the severe PANDAS sxs abated. Dilated pupils, choreic type movements etc. With no "proof" of high Cam kinase, I was fearful of continuing high dose antibiotics. He has not had Strep in several years (now) and that was our main culprit (Strep every Spring and Fall for years) so, in a sense, we seem to "outgrowing" some of the flares, roller coaster ride etc since he is not getting Strep as he once did. Interestingly, speaking of the stimulants. We tried 4 different when my son was 8...total failure. We had to quit every single one within 10 days of starting them. He "appears" like a low dopamine kid. One would think that stims would be helpful. Attention/focusing issues yet he's a mainly vocal ticcer (not so much motor) and a little OCD. More ADD than ADHD. Concerta caused him to stay up all night and literally chew all the skin from his hands and pick it off his feet. Focalin- thought we were onto something good then on Day 10 he spent the day (attending 2 different MD appts) underneath the MD exam tables picking the paper rolls for the exam tables into little pieces making piles of little scrapes. He became super focused and soooo OCD on everything. He was running away from me in stores, very argumentative, no ability to listen or follow directions etc. All that stopped with stopping medication. We then moved on on to Vyvance (stim/amphetamine base) which caused sever dystonic, tardive dykinesia reaction. Tried Dex and that caused severe OCD. He was on none of these medications for longer than 10 days. It was sad because the stimulants helped his attn and focusing and he was so bright academically (at first). Told me for the first time in his life he felt smart.Sad to hear from an 8 year old that had struggled for years in school. By day 10- he was a different child, one I didn't know and the whole house of cards fell down. So, by these pictures of the side effects from medications...he had different stuff going on in different parts of the brain causing different reactions/side effects. I was just never really able to make heads or tails of any of it to come to any logical conclusions of the "magic bullet" to make it all better. Without a good doc to figure it all out and guide me to, perhaps, a different class of meds that might prove useful...I gave up!! Lamictal, Zoloft and few vitamin supplements are all we use and things are OK. Not perfect, still have issues but copacetic and functional compared to where we have been. Neuro typical... No. Better- yes. I am now relying on puberty and the outgrowing some of these behaviors as my magic bullet for improvement. Working for me- uuuhhh, maybe. At 12.5...still have a little ways to go. I'm at the point of going down on meds. Not adding more. Almost need to get a clean slate, so to speak. See where we are sans any medications to see where we need to go. This whole topic is fascinating. I just lack the concrete knowledge to know where to go with it and 'act' with any firm footing I know what I am doing. Especially, with my child. I can't know how he is feeling and know what some of these meds/supplements and treatments are doing for him. He's a kid of few words on expressing how he is feeling and what is going on with him. He lacks the verbal expression and ability to share his "inner self." Often, by the time he does share...the symptoms/feelings have been brewing for quite some time. Although, he can vocal tic enough to drive you crazy some days. Trying to understand all this is like the endocrine system with all the negative feedback loops and hormone responses from multiple brain/body areas (thyroid, thymus, parathyroid, hypothalmus, kidneys, bone etc)...antagonists, agonists, low D, high D, what are the SSRI's doing to sites, clefts, puddles...OMG. Need a PhD in molecular biology to keep it all straight. And good testing data...we don't have any of that so it is like trying to put a 1000 piece puzzle together and when you get to the end of the box- 300+ pieces are missing. Anyway, just wanted to pass along... I have enjoyed the string of posts. Can't bring myself to really act on any of it but interesting to the science research junky that I am

I have added water to powder to formulate medications (for years) to dispense to patients in MD office and ER...I'm not sure how the pharmacy would be able to advise you on how much of the powder equals a dose of the proper mg ordered. These are concentration solutions...so many ml of medication "in solution" equals so many mg of medication per ml. Then the proper dosage is given from there. There are fillers in the powder- I bet that is what the pharmacist is talking about. It is medication, sugar, flavorings, fillers etc. He could not be sure powder (even if shaken) would give proper dosage of "medication" or it could just be rest of the stuff. Even when in liquid form- you have to shake before giving because the different particles settle out in solution. I thought there would be issues with trying to fill capsules with liquid medication. You may be left with trying the chocolate sauce idea with the nasty tasting liquid as dispensd:D

Yellow gold, "seedy" foul smelling stool is usually indicative of C. Diff. Very distinctive smell. No other stool smells like C. Diff stool. And, I'm right there with you- have taken care of it all. Big people, little people, old people, young people. 25+ years of nursing. I've never put a name to it- but sulfur sounds good. Once you have smelled it once...you will know it the rest of your life. Make your nostril hairs curl! I would get specimen and take to Peds for testing.

Try adding chocolate sauce to medication in liquid form (per dose... right before taking)...may find it more palatable. Everything tastes better with chocolate (and bacon:). I can't imagine trying to fill filler capsules with the liquid...most doses are like 5 ml minimum unless the doc is special compounding and concentration is much greater. Seems like it will take lots of capsules per dose. Some pharmacies in US will add flavors to liquid med to make them taste better- you have to ask. Augmentin is horrible...supposedly it is banana flavored. Not sure what banana they copied. Not one I've ever eaten!! Air freshner is about right. Thick, chalky and gritty. Chocolate syrup is idea I have shared with parents in ED with kids that hate liquid meds and I've had anecdotal reports back that it worked. Just think of it as making a banana split- yeah, right

Nancy, I just wanted to say that I admire your posts. You have the knack of always saying the right thing to the right person... likely at the right time!! It is clear you have walked the walk, thus can talk the talk. You understand the OCD behavior, mindset and treatment. Your DS is lucky to have you as his Mom! It is obvious you have done your homework to help him and it has paid off. You provide such sound advice to those in need of understanding these irrational behaviors. While my DS12 has never suffered with OCD to this degree (thankfully). Had I posted this question---I would have found this post to be so insightful and helpful! My son's OCD is more quirky and noticed really only by those close to him. Mom mainly, Not debilitating or life altering in the grand scheme of things. We have more ticcy issues... for which, I have yet to find the magic bullet Just wanted to extend a shout out for such a concise yet revealing post into the mindset of OCD behaviors. You ARE THE BOMB, MOMwithOCDson

Broo100, Did you see results immediately with tics when your son started taking Anatabloc or did you give it awhile... and then it helped. In other words, do you have to give it routinely for awhile then the results are more immediate? I bought some- only gave my son a 1 tab, then 1 tab then 2 tabs over last weekend. Didn't appreciate much for my son's vocal tics(main tics- he very little motor tics). Just wondering...also son does not like mint. Very sensory to taste so he just swallowed them. He dry swallows pills when needed. Grosses me out but he has never had any issue with it. You may not know... but does it have to be used like lozenges to work? Should sucking on it vs swallowing it have much impact? It recommends 2 tabs 3 times per day...does you son take that much daily or more? Thanks!!

My brain cannot comprehend any of this. Are you saying that if you treat the allergies before you get pandas, you might avoid a pandas kid or re-event...because that is what i am saying. My thought is that since i started allergy shots a year plus into this 4yr episode...ds might be flaring more per each injection. now that they are 4 weeks apart, i am trying to see if the regressions are do to the shots...then we get really good...then the next shot...and poo hits the fan again... I am not ready to say that is what is happening...but i think we will need a couple more shots to tell. However...if this is true...the baseline, if i can call it that..was fantastic just before this last shot..but is 5 days or so enough to call a baseline? 911...i am not sure what you are talking about in regards to dad with autistic kid...sounds familiar though.. also did you see my pm? I PM'ed you, sorry the first one didn't seem to take. Yeah, that Dad's story is on the Stop calling it Autism main page, I think. Not sure what to say about the allergy shot thing. Good luck!

If you prescribe to the "Stop calling it Autism" theory and some of the NIDS stuff ...the father on the site stated he realized his son was not Austitic but sick when he got some kind of rash or bites or something to that effect on his legs and was suddenly a different kid...not autistic at all. Father theorized that the immune system finally had "something" it could work on rather than eating away at it's own self... so to speak. He went about to improve son's immune system and responses. States he is no longer Autistic. You can read his story on the site. Again, if you are of this theory and belief system...you can extrapolate that kids that are on allergy shots- give the immune system "something" to do. Not on allergy shots...attack thyself. My oldest took allergy shots for 5 years- neurotypical Youngest never has- PANDAS et al. Just throwing it out there, a theory. Not one I can prove. That and a $1.25 will get me a cup of coffee

The dose we have is the smallest: .125 in a wafer. We have not tried it, makes me nervous. What dose did you use. was there any withdrawal that you can remember? Dr. has told me to use as needed. Thanks! Kathy He was on Klonopin tablet 0.5 mg at bedtime. I would be surprised if you would see much response with 0.125 mg in average weight adult. Dose seems too low?? No, we did not experience any withdrawal when stopping. I weaned it down to half tab daily then every other day then every third day etc over a month or so and he was fine. I did it on my own- not even under direction of MD. I just thought it had outlived its' usefulness and it was time to go. I like to keep him on minimal meds if I can. Interestingly, when my son had sleep study done-part of testing is urine tox screen. He did not even pop positive for benzos (which Klonopin is) at 0.5 mg daily dosage so apparently it was not even enough to be detectable in system.

My son took low dose at bedtime for a couple years from about and it helped his anxiety. He was about 8 at the time. He no longer takes it but I think it served a useful purpose when we used it.

This is my excuse for a dusty house:) I am helping my children's immune system by not having an overly clean, hygienic atmosphere Works for me!

AN ENT or Allergist will usually handle this...my son had severe sinus infection on CT when he was 6. Treated with high dose Augmentin for 6-8 weeks and MD made us have repeat CT to prove resolution. Most docs don't want to expose kids to radiation but his was so severe she said the radiation was worth the risk.

High Alk Phos is nothing usually to be concerned with in children- sign of growth. According to our Internal Meds Peds. My son's was super high also. Several times the range. Have nothing to chime on the rest...sorry:(

I, too, have an interest in the Anatabloc...wow, I just looked it up. Supplement from GNC- my favorite supplement store-ha!The ingredients are Vit A, Vit D and Anatabine. Anatabine is one of the minor alkaloids found in plants in the Solanaceae family, which includes the tobacco plant and tomato, that has been shown to affect monoamine oxidase (MAO) activity.[1][2] Anatabine is found in cigarette tobacco and smoke, and is absorbed in the human body after tobacco use.[3] This is interesting...my Neuro actually suggested Nicotine patches for my son for tics to see if it would have an impact. I never did...just thought there was something so wrong about pot'l addiction to nicotine and also there as age thing re:patches. He is too young at 12.5. If this stops tics- I'm tempted to try it.So far, the supplement trials have had very little impact for us. But, always willing to trial another one My son's tics are usually better in summer once we get through height of allergy season. My son's tics started first then OCD many years later. His OCD is not bad, rather quirky. It was never really identified as OCD years ago. Perseverating, resistance to change, liking routine, needs for task completion etc. I didn't really start calling it OCD until he was older- about 10. He waxes and wanes with it.

Do you have specifics on the abnormality. We have had abnormal EEG. DS12 takes Lamictal for it. I went down that road for many years before discovering PANDAS. Ours was spike and wave activity sleep activated in temporal lobes. He has dx of LKS from that, although, much of PANDAS fits with same time onset.

I used it for several months with my DD12...we began having "anger issues" in a child that never had anger. So....I blamed it on the NAC and took him off. Anger issues resolved. Aggression, anger...I'd put it in the same boat. FWIW...that was our experience.

Jennifer- I recently did some continuing ed on C. Diff. This comes directly from one of my nursing sites--CE Direct. Maybe you can find something useful. I feel soooo bad for you and your DD. Medications and Treatment The goals of treatment for C. difficile colitis are to halt production of toxins, eradicate the microorganism, reduce symptoms of the disease and prevent recurrence.22,23 Once the diagnosis of C. difficile colitis is made, treatment depends on severity of infection.1 Although C. difficile is present in 2% to 3% of healthy adults and up to 70% of healthy infants, treatment of asymptomatic carriers is not recommended.4,5 In mild cases, the antibiotic should be discontinued, if possible, and this may be the only treatment necessary. This conservative approach will help the normal colonic flora repopulate and reduce the risk of relapse. Specific therapy aimed at eradicating C. difficile is indicated if symptoms are persistent or if antibiotics cannot be discontinued safely.23 Those patients with moderate diarrhea should be treated with antibiotics. Antibiotics and other medications and treatments for treatment of C. difficile colitis include:23-25 Metronidazole Vancomycin (Vancocin) Fidaxomicin (Dificid) Bacitracin (Baciguent) Cholestyramine (Questran) Probiotics Metronidazole and vancomycin are the two most widely used antibiotics, although metronidazole is the drug of choice. It is more cost effective, is excreted in the gut when administered via IV and doesn't have efficacy issues such as the emergence of vancomycin-resistant enterococci strains.26 Metronidazole may be administered via IV or orally, whereas vancomycin is only administered orally. Because IV vancomycin is not excreted into the colon, it has no effect on C. difficile colitis. If the patient is ill and has severe colitis, oral vancomycin is more effective and offers faster resolution of symptoms. Physicians usually prescribe vancomycin for patients who are unable to tolerate metronidazole, those who are pregnant or those who have relapsed.27 For mild disease, there is no difference in efficiency between vancomycin and metronidazole. Because C. difficile lives in the colon, the oral route of administration is preferred. Since vancomycin is poorly absorbed from the intestinal mucosa, it tends to remain in high concentrations within the intestine; thus, it is more effective than metronidazole in treating most severe cases of C. difficile colitis.16 There are usually fewer treatment failures with oral vancomycin in comparison with metronidazole. Once drug therapy is initiated, symptomatic improvement occurs within 48 to 72 hours. In very ill patients with fulminant colitis, combining IV metronidazole with oral vancomycin may be necessary.23 Fidaxomicin is a new class of a macrocyclic antibiotic for treatment of C. difficile colitis. Fidaxomicin is bactericidal in contrast to vancomycin and metronidazole, which are both bacteriostatic. Recent clinical trials reveal that fidaxomicin may be as effective as oral vancomycin, and the recurrence rate in non-NAP1 strains is slightly lower.28 Because fidaxomicin is very expensive, it is not being used as first-line therapy at this time but is often used when patients relapse.24,29 Oral bacitracin is sometimes used for the treatment of C. difficile colitis. The drug is bactericidal but is not as effective as vancomycin or metronidazole.29 Cholestyramine, an anion-exchange resin, has been used in clinical practice to treat C. difficile. The drug works by binding to the disease-producing toxins secreted by C. difficile; however, the efficacy of this drug has been called into question, and investigators have shown marked variation in results.4 In addition, cholestyramine binds vancomycin and should not be used concurrently with vancomycin therapy.30 Drugs that must be avoided include loperamide (Diamode), diphenoxylate (Lomotil) and narcotics. These are anti-motility agents and can increase the severity of the symptoms by preventing excretion of the toxin.4,31 Probiotics are live, nonpathogenic bacteria that are the same or similar to microorganisms found naturally in the human body. When consumed in sufficient amounts, they are capable of colonizing colonic mucosa and may be beneficial to health. Also referred to as “good bacteria” or “helpful bacteria,” probiotics are available to consumers in oral products such as dietary supplements and yogurts, as well as other products such as suppositories and creams.32 Most probiotics are sold as dietary supplements or ingredients in foods and cannot legally claim to cure, treat or prevent disease. The U.S. Food and Drug Administration has not approved any health claims for probiotics.32 Claims made on a product, no matter how general, should be truthful and substantiated, but not all manufacturers have clinical proof.31 Probiotic foods are safe for the generally healthy population, and encouraging the intake of food products containing probiotics, such as yogurt with live cultures, some soy beverages, tempeh, and fermented and unfermented milk, is recommended.31,33 While most research is inconclusive, probiotic studies have been conducted for C. difficile infection. Probiotics in older adults may prevent antibiotic-resistant diarrhea and the complication of C. difficile colitis. Further studies are being done to confirm probiotic use with C. difficile. The literature shows probiotics may be helpful for prevention and treatment of C. difficile by several mechanisms (a probiotic is defined by its genus, species and strain designation, which is important when examining the specific probiotic strain to the strain’s published scientific literature):31,34 Colonization of intestinal flora. Patients with C. difficile have diminished bacterial diversity. Both Lactobacilli and Saccharomyces boulardii have shown to suppress the growth of C. difficile in hamsters. Antimicrobial activity. Saccharomyces boulardii has be shown in vitro to secrete a protease that inhibits binding of enterotoxin A, and Lactococcus lactis has been shown to have antimicrobial activity against several strains of C. difficile. Intestinal barrier protection. Probiotics may be capable of interfering with the binding of C. difficile toxins A and B to intestinal epithelial cells. These bacteria include Lactobacillus rhamnosus, Bifidobacterium breve and Streptococcus thermophilus. In vitro studies show Saccharomyces boulardii inhibits adherence of C. difficile. Immunomodulation. Probiotics modulate immune systems. Bacteria strains include Lactobacilli, Lactobacillus bifidobacterium and Saccharomyces boulardii. Probiotic supplements are generally safe and may be helpful but should never be used as a single agent in the treatment of active disease.4 In addition, it is important to emphasize that probiotics are highly heterogeneous with differences in composition, biological activity and dose among the different probiotic preparations. It is advised that patients with colitis or irritable bowel syndrome consult physicians or dietitians for guidance on probiotic supplements.35 Probiotics The role of probiotics such as Saccharomyces Boulardii and lactobacilli is still being debated. Current results are not convincing, and experts do not recommend probiotics as first-line therapy for active C. difficile infection. Anecdotal reports suggest that S. Boulardii appears to be more effective than lactobacillus. Both probiotics appear to work by inhibiting the effects of toxins on colonic mucosa.26 Relapse Relapse rates vary from 20% to 30% and occur after treatment with either vancomycin and metronidazole. Relapse may occur anywhere from three to 21 days after treatment is discontinued. The most common reasons for relapse include failure to eliminate the organism from the colon and probable reinfection from contaminated hospital surroundings and/or patients. Hospital data indicates that once a patient has had one relapse, the risk for future relapse is markedly increased. Relapse tends to occur in individuals who have a weak immune response to C. difficile. Disorders that tend to erode or denude the colonic mucosa also increase risk for relapse. The treatment of the first relapse is with the same antibiotic used for the initial episode as long as the severity level is the same as the initial episode. For a second relapse, vancomycin is recommended in a tapered or pulsed regimen.27,30 Fidaxomicin is also an option for patients in relapse. In addition, probiotics such as Saccharomyces boulardii are given along with the antibiotic. This probiotic seems to inhibit the effects of toxins A and B on the colonic mucosa.4,27 “Stool transplant” is rarely practiced at this time, but research has shown that stool transplant is helpful in 91% of patients who had undergone two or more failed courses of treatment for recurring C. difficile. Stool transplant is a procedure in which donor stool is placed in the colon of a patient with recurrent C. difficile using a colonscope or nasogastric tube with the intent of restoring healthy intestinal bacteria. In one study, patients having C. difficile for 11 months on average responded to the stool transplant in just six days and reported an 85% success rate after one year. There is a limited risk of hepatitis and retrovirus with this approach. Administration of other bacterial preparations is under investigation.36 Not that I don't think you are clean but this bug calls for very diligent cleaning measures to rid environment of spores- it takes only a few spores to reinfect. Nearly all CDIs occur as a result of fecal-oral transmission by human vectors or by contact with a contaminated environment. The contamination occurs when patients with CDAD diarrhea or asymptomatic carriers of C. difficile shed the bacteria into their surroundings.5 Within four to five hours after being shed, C. difficile bacteria are able to change to a dormant form called a spore. In this form, C. difficile is highly resistant to cleaning and disinfection measures and can survive for months or even years on environmental surfaces.5,13 One study found spore contamination in 49% of rooms occupied by patients with diarrhea, 29% of rooms occupied by infected patients without diarrhea and 8% of rooms occupied by culture-negative patients. Furthermore, the study found that 59% of healthcare workers, as well as 75% of physicians caring for infected patients, had hand cultures positive for C. difficile.13,15 Patients have a high risk of infection or colonization when they are admitted to C. difficile-contaminated rooms and cared for by staff with C. difficile-contaminated hands. In other studies, C. difficile spores have been cultured from bathtubs, bedpans, bedside rails, bedside tables, call buttons, door handles, equipment used to obtain vital signs or perform physical assessments, faucets, handrails, IV pumps, light switches, sinks, telephones, toilets, walkers and wheelchairs. Spores have also been cultured from clothing and stethoscopes of healthcare workers caring for infected patients.10,15 Many common hospital disinfectants cannot kill the C. difficile spores found in rooms of colonized or infected patients. However, sodium hypochlorite (bleach) is effective for cleaning contaminated surfaces in patient rooms. Sodium hypochlorite, alkaline glutaraldehyde or ethylene oxide are recommended for disinfecting patient care equipment and medical instruments.4,5 (Level A),6,15) The alcohol gel hand rubs (sanitizers) used in many hospitals to disinfect hands do not kill C. difficile spores. Soap and water are recommended for handwashing when caring for infected/colonized patients. Healthcare workers should also wear clean, nonsterile gloves when caring for patients and when touching patient environments.5,(EBP Level A),6 Take down privacy curtains and send them for laundering. Hope some of this helps!

No, but our Neuro strongly cautioned if one is taking an SSRI---one should NOT take St John's wort. Careful if your child is already on Rx medications with supplements. Clear through MD, first