So many people–angels, really–helped us when she was so sick. I can only hope to help someone else. <3
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Just before her procedure, the doc prescribed Rifaximin, which was very effective and she had no side effects. It was unclear how long she'd have to take it, however, and we wanted out of the two-year hell we'd been through.
it saved my daughter's life–she had recurring C. Difficile that was persistent and she was only 12. Very scary and debilitating. FMT process is easy and I found it safe. Mayo Clinic is a safe place for it, but it is being done all over now. At the time we were pioneers. It is a simple and immediate fix for C. diff. I'm forever grateful.
Hi, @tonnie325, you must never give up–docs who can't diagnose something and then call it a psych problem out of frustration are not docs you need. Some tips: This Mayo site has great information on it, so look up Clostridium difficile and see if the symptoms match his.
The cytotoxin test is the gold standard for detecting C. Difficile. I'm not sure, but all labs should be doing this protocol by now, but if they aren't, you might get a false negative. So research cytotoxin test (they measure cytotoxin A and B) and demand one because it might be C. Diff., given his symptoms. It could also be a FODMAP problem, which stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. These are simple sugars found in all kinds of natural foods and if he has an intolerance, that could make him sick in the GI tract. Celiac disease is easily tested, too.
Maybe you've tried these things, and I'm not a doctor, but getting him to Mayo would be a good call. Because he's 18 you can maybe go to more than one of the Mayo clinics (Rochester or Phoenix, not sure where else they have one). If he's that ill, it's worth getting him in if you can afford the trip. The grand rounds approach at Mayo is what saves people (multiple docs reviewing his case and discussing it). It takes time to get in, so apply today.
I know the fear and frustration you feel. You are not alone. Write me anytime here, I'll respond with any info I can share. Many moms supported me when we were in the dark woods, so here's a little candle. You can do this. I learned it helped to cry on the phone when making appointments. People want to help. Find those who can. You might have to remind them what they signed up for when they took that Hippocratic oath.
@txmom33 @julie1073 , I wrote this post 5 years ago and here's what we learned after 2 yrs of misery. It was C. difficile (see the chat boards here about this diagnosis, as well as the listing on the main Mayo site), but we had gotten two false negatives on the first tests, so we went many months with bad information. In the meantime she ended up on feeding tubes. If, after researching this illness, you think you child might need to be tested for that, ask for the Cytotoxin test (a.k.a, the gold standard test for C. diff.). That one is most accurate and I think the only one they use now, but that's the best one. The antibiotics to treat it were no fun and she got reinfected 3 times because those superbugs would not let go. We cured her instantly with a fecal transplant. It's a miracle cure for persistent C. diff.
C. diff. is bad because it builds up toxins in the gut that can eventually affect the sympathetic nervous system. This happened to my daughter and she got a secondary condition of Postural Orthostatic Tachycardia Syndrome, or POTS. This is also known as autonomic nervous system dysfunction. [Ironically, the doctor who suggested it might be a problem never explained to me what it was, so we went another year before we could get in to Mayo (yes, it took a YEAR! I understand they have shorter wait times now) and that's exactly what it was.] You can look up POTS here too, but symptoms are racing heart, nausea, overheating, flushed face, fatigue, fainting.
We also found out at Mayo that she had a fructose intolerance. Fructose is in most fruit and many legumes and some veggies, so we had to learn what to eat. Any sort of simple sugar malabsorption or intolerance can cause tummy/gut trouble and vomiting, so ask your doctor about that.
I know how stressful this is and how much you agonize watching your kid suffer when you can't find answers. Never give up. We were helped by so many strangers who had gone through the same things…look for the helpers. Today my daughter is healthy and strong and we are so grateful. Cured of the C. diff. and she eventually outgrew the POTS. Get to Mayo if you can't figure it out. It's not an easy week, but you get answers from the best.
I saw this post in the string and thought I'd offer what I learned when my daughter was sick. Her doctor explained that C. Diff. toxins can break off the cilia in your colon, so if you've been quite ill, you need to grow those back to ease back into health. The different parts along the length of the cilia, as he explained, absorb different nutrients (I'm sure this is way oversimplified, but bear with me). He said the broken off cilia are short, and at the base is where they absorb fats, so high-fat foods might actually be easier to digest at first. After a few days, when they start growing back, they can absorb more carbs and vitamins and minerals (middle part of the cilia) and after a few more days, they will be long enough to absorb proteins (far end of the now longer cilia), but start with easily digested proteins like milk and eggs. So your butter instincts are good, maybe wait a bit for rice, and then eggs last. He had us "upgrade" our menu every 3-4 days. It's not very scientific sounding, but it worked for us and she sure enjoyed the ice cream phase! I was just so happy to see her eat without suffering. Hope this helps.
Rifaximin is an off-label treatment with minimal side effects, but fecal transplant is a proven cure. Works immediately but you may have to eat specially to rebuild the gut cilia that C. Diff. cytotoxins destroy. High fat diet for a week then high carb, then add proteins. Miracle!