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Griff 11-06-2013 05:11 PM

Sorry about the roller coaster Clod. Any new meds on the horizon?

BigV 11-06-2013 05:23 PM


Originally Posted by Clodfobble (Post 882696)
Not worried about the immunosuppressive aspect, since the med the doc would rather he stay on long-term instead is methotrexate. But the bone and joint thing, yeah, that's the thing he keeps warning me about.

V, we have not only considered a fecal transplant, I have a donor sample in my freezer (closed within several layers of packaging.) I am scared to use it though, because there is just no telling what is in it. The doctor is on favor of them in general, but he warned there could also be a major adverse immune response.

Do you know the donor? Perhaps it's you or a member of your family. The reason I ask is that I also recently heard of a way to scan the *ahem* contents of the sample. There's an outfit called the American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report. Here's the story I heard on NPR. It went into great detail about the kinds of flora found and the relative proportions, etc. I don't know what kinds of unknowns you're worried about, but perhaps this link could help you reduce the number of unknowns.

As for the major adverse immune response, I am in no position to argue with your doctor through you. But this thread's *always* been about gut flora and these ideas I hear about always remind me of you and the little Fobs. There was great skepticism on the part of some patients and some doctors, unsurprisingly. But for those that had success, their testimonials border on rapturous.

Griff 11-06-2013 07:46 PM

Lots of gut talk out there. I saw this earlier on rheumatoid arthritis.

Clodfobble 11-06-2013 09:03 PM


Originally Posted by orthodoc
Having it done at a medical facility would allow for lab culture of the sample to rule out C. diff, pathogenic enterococci, parasites, Giardia, etc. prior to the actual procedure. I wouldn't use an untested sample.

Can't be done at a medical facility anymore. After the procedure gained a little attention, the FDA made a quick ruling maybe 6-12 months ago that donor stool was "medicine" and therefore under a whole different set of rules. Effectively the only way the doctor can do it right now is if they use their own stool, and that opens them up to a whole different realm of liability. This isn't permanent, it's just a temporary stay while they figure out how they're going to regulate this thing, but for right now it's do-it-yourself, or nothing.


Originally Posted by BigV
Do you know the donor? Perhaps it's you or a member of your family. The reason I ask is that I also recently heard of a way to scan the *ahem* contents of the sample. There's an outfit called the American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report.

It is a member of my family, but by marriage only. I figured that anyone connected to my genes was suspect. Too much history of digestive disease on all sides of our families. Plus, she was born in a foreign country and ate a non-Western diet for the first part of her life, so her bacteria are in theory going to be much more varied and healthy. I appreciate the link greatly; so far the only places I knew to get the stool tested required a doctor's prescription, which would require my relative to become a patient of that doctor, and the doctor to be on board with what we were doing, etc. I will send a sample off to them, so at least I will know for sure if I can rule it out or keep hanging onto it.

Clodfobble 11-06-2013 09:10 PM


Originally Posted by Griff
Any new meds on the horizon?

Nothing that we know of, other than the untested gamut of psych meds. Potentially we could switch from Methotrexate to 6MP, but there's no reason to think it will work any better, they function very similarly and the only reason people choose one over the other is if they are experiencing significant side effects for whatever reason.

There's this other insane thing I've started doing, because I'm willing to try anything at this point, and that's re-capping all his meds. Most pills come in a plant cellulose capsule, which is a polysaccharide and thus not allowed on his diet, but the general agreement is that the benefit of the meds outweighs the detriment of the capsule. But he takes an awful lot of pills when you add them all up. And they DO make gelatin capsules that you can buy in bags of 1000 online for very cheap. So I opened all his pills this week and poured the contents into empty gelatin capsules. Won't really know if it's helping for another few days, but it's a damn lot of work.

Clodfobble 11-06-2013 09:18 PM


Originally Posted by BigV
There's an outfit called the American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report.

Ah, I read through it a bit more. $99 is just for bacteria (though very thorough in that regard.) If you want to expand the information to include potential parasites, viruses, or fungal infections, it's $2,500.

Clodfobble 11-11-2013 06:43 PM

Update from the doc appointment today: we are going to try switching to 6MP after all. This is an especially good time to do it because for years now, one lab called Prometheus has held the patent on the blood test to determine how much of the medication is circulating in your system, which is necessary to safely use the drug. They have been bastards and were charging $700ish for the test, which often must be done several months in a row and was not usually covered by insurance. But apparently over the summer one of the unpublicized cases the Supreme Court heard was the Mayo Clinic suing Prometheus over this monopolizing behavior, and the Mayo Clinic won. So now you can get the test done for a reasonable fee and covered by insurance. This wasn't something that was keeping us off the drug prior to this, but it does make it easier to try now.

But in less optimistic news, Minifob has again lost weight. The doctor said we are now officially on the lookout for wasting syndrome. He was quick to say that Minifob in no way qualifies for the diagnosis yet, but he is nonetheless falling further and further behind the standard growth chart, despite taking in 150% of the daily calories a 7-year-old is supposed to consume, and it is especially concerning given that he just came off three months of steroids and should have been aggressively gaining, if anything.

But he said there have been some patients that start taking 6MP and just sprout like a weed, so with any luck that will be us too.

BigV 11-11-2013 06:50 PM

That I pretty alarming.

glatt 11-11-2013 07:00 PM

Good luck with the 6MP. I hope he grows like a weed.

monster 11-12-2013 08:46 AM

We feel your pain with the weightloss :( Goalie Boy weighed less than at his growth eval 4 months ago. but he eats like your standard teenage swimmer/hockey player -it's not reduced proportional to his size. He can pack away a whole pizza as a snack :(

Griff 08-19-2014 07:57 AM

Thought I'd tuck this in here. It seems mainstream science is catching up to cellar science.

xoxoxoBruce 08-19-2014 11:42 AM

Here's one to expand on that.

monster 01-26-2015 08:09 PM

I assume you has seen this, but just in case not....

Wondering how it's all going with you guys.

I'm headed off to train for my new job on Weds, and I'm told the woman I will be working with is a whizz at gluten -free baking -learned she had celiacs/similar so went to some sort of chef school to learn how to bake but insisted on making everything gluten-free. Will report back if I learn anything interesting.

Clodfobble 01-27-2015 07:12 AM

Yeah, I saw that. One step closer to them acknowledging that the genetic damage comes after conception, and is thus... dun dun dun... environmental.

As for how it's all going with us, it's going fantastic. "They say" (i.e., the general anecdotal reports on messageboards) that SCD takes 1-2 years for ulcerative colitis, 2-3 years for Crohn's, and 3-4 years for autism to achieve complete remission. Minifobette is a couple weeks shy of her 4 year anniversary, while Minifob is close to 3, but both have had a few small accidental exposures along the way.

At their last scope (18 months ago,) Minifobette was about 85% in remission, and Minifob had shown only minimal improvement, with outward symptoms to match in both. Nowadays Minifobette is outwardly recovered, with a few slight speech odditites as if she learned English as a second language (meanwhile, however, her teachers say she is picking up Spanish at a ridiculous rate, indeed as if she had already learned a second language and was working on her third.)

Minifob, on the other hand, has been massively improved for about 3 weeks now, since starting a new med that focuses on GI histamine dumping. Haven't had a single meltdown in those three weeks, and he has finally started making some progress on controlling his overwhelming stutter.

Just today in fact, my plan is to email his doctor and tell him that we want to try weaning off the immune suppressor and see if he can hold steady with this new med instead. We shall see.

monster 01-27-2015 08:27 AM

oooh.... I remember reading something about drumming and rhythmic activities helping people overcome stutters -is it coincidental that minifob took up the drums or not?

And now I type this, I'm reminded of the kid -Musharaf- in Educating Yorkshire who taps out the rhythm of the words with his hand to help

Not sure how quickly this particular clip gets to the appropriate point

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