9yo fed up with being sick

[JenniferG]

My 9 yo dd was diagnosed with C Diff in Sept. we are on our 4th round of abx. Tonight she started crying and said she wishes she could lay a mattress on herself to stop breathing, or just hold her breath until she dies. I was floored. She has been out of school since Sept. she REALLY needs her abx, but can't becasuse of C Diff. I already have a call in to a Psychologist, for anxiety,.....

 

She said her brain is taking over and she can't control what it thinks and she is scared it is going to make her do something. I calmly told her we loved her, she was safe, the infection was making her think that way and that it wasn't her, that she will always be in control, to ALWAYS tell me when those thoughts enter her head...even if its over and over again. I will call the Psychogist again fist thing in the AM..any other advice? This scares the day lights out of me... We have a suicide on each of my husband and my side if the family.

 

Also, Was wondering if someone had some insight on C Diff.....

 

She was Vanco again for 2 weeks every 12 hours. Stopped Thurs...down hill from there..we see GI tomorrow. When I add in the probiotics at high does....100-150 billion a day and 2-4 Florastor..it seems to make things worse...and she gets an itchy scalp..

[Missmom]

Have you tried a steroid burst? Maybe ivig or pex... I know ivig and pex are not as simple as waving a magic wand and very expensive but maybe steroids would work in the short term. I have also read where many gi doctors can taper Vanco. over a six week period to help finally get rid of c diff. Others on this board have also used Vanco. as a pandas abx so if you could do a taper it may just buy you some time until you figure out your next step. I know probiotics are crucial, but maybe just stick to the ones that are specific to c diff right now such as Sachs. B. and lactobillius gg. I am just trying to get over c diff myself and those are the two I am taking currently.

[sf_mom]

I might of mentioned this before but I had C-Dif twice at the beginning of my Lyme journey and we continued antibiotics while on antibiotics for C-Dif. If I am remembering correctly it was Vancomycin/Azithro and Xifaxin/Azithro.... there was also a third antibiotic tindamax at one time. It was when we initially added tindamax that really kicked off the C-Dif. Tindamax can really hit biofilms very hard and it is very possible to have biofilms in gut inclusive of yeast bofilms. Have you done a "comprehensive" stool analysis to see how her gut is holding up? Does she have low digestive enzymes, yeast, poor gut bacteria, inflammation in addition to C-Dif? Some of those issues might be preventing her from resolving C-Dif completely especially if there are biofilms. Have you thought of using any herbal anti-microbial's? You might also check for KPU, Zinc/Copper inbalances, Heavy metals as any of these issues can impact the gut tremendously.

 

Just throwing some ideas out there for you to potentially pursue.

[Hopeny]

First I am very sorry you and your daughter are going through this, I went through this with my PANS/Lyme daughter when she was 8 (my first posts on this board were on this topic) and it was absoultely the worst most helpless time I felt as a mother. What is concerning is that your daughter is thinking through a way to do this with laying a mattress on her so I think you need to take immediate action. My daughter was looking out windows contemplating jumping and also would try to hold her nose/go under blankets to stop breathing. It is actually not likely depression but a type of OCD, the suicidal thoughts are a compulsion - the child does not actually want to die, they are just looking for relief from the obsessive thoughts. Immediate CBT would be my first thought also with a concurrent evaluation from a PANDAS knowlegable psychiatrist. My daughter's suicidal ideations were quickly relieved with anitibiotics. We had to change therapists as ours was not an OCD expert and just didn't get it. I also highly suggest without her being aware you monitor her 24/7 and limit her access to high windows and the internet to get any ideas. While their ages are terrifyingly young for these thoughts, fortunately they are limited in knowing how to execute these thoughts. Where are you located? I have a great group of therapists who specialize in CBT near where we are in White Plains, New York if that will help.

 

While I have no experience with C Diff I think SF mom makes excellent suggestions, Dr. Nancy O'Hara is an excellent PANDAS knowledgable integrative MD in Wilton CT if that is convenient for you, if it is I am sure if you called and explained the severity of the situation you could get an urgent appointment.

Hugs to you and you will get through this.

[Dedee]

Have you thought about antibiotic injections or IV that will bypass the gut? This might help relieve the symptoms while you treat the C-diff. I agreee completely with the S. boulardi. It helps tremendously with c-diff. You can still go even higher on the probiotics. One lyme doctor suggest up to 300-400billion units per day for gut issues. My daughter takes 100 billion per day and she doesn't have c-diff.

 

So sorry for all you are going through. Nothing is worse than seeing your child suffer that way. I hope you can find something soon that offers relief.

 

Dedee

[NancyD]

I would like to echo what SF Mom is saying. My DD has battled C-dif for the last few months. She was very depressed and threatened many times to kill herself. What has made a HUGE difference is Tindamax and grapefruit seed extract (GSE) in addition to her abx (Azith/Augmentin XR) and probiotics (Theralac and SBC). The die-off or herxing during the first two weeks was quite bad but each week it has gotten so much better. Now things are back to being calm and steady and she is feeling so much better.

 

Also what has helped is reducing (eliminating if at all possible) carbs and sugar in the diet, as they feed on it.

 

I might of mentioned this before but I had C-Dif twice at the beginning of my Lyme journey and we continued antibiotics while on antibiotics for C-Dif. If I am remembering correctly it was Vancomycin/Azithro and Xifaxin/Azithro.... there was also a third antibiotic tindamax at one time. It was when we initially added tindamax that really kicked off the C-Dif. Tindamax can really hit biofilms very hard and it is very possible to have biofilms in gut inclusive of yeast bofilms. Have you done a "comprehensive" stool analysis to see how her gut is holding up? Does she have low digestive enzymes, yeast, poor gut bacteria, inflammation in addition to C-Dif? Some of those issues might be preventing her from resolving C-Dif completely especially if there are biofilms. Have you thought of using any herbal anti-microbial's? You might also check for KPU, Zinc/Copper inbalances, Heavy metals as any of these issues can impact the gut tremendously.

 

Just throwing some ideas out there for you to potentially pursue.

[911RN]

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!