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Pete Zicato 06-12-2013 11:46 AM

Aye. There's the rub.

Remicaid is humongously expensive. My gastro convinced the HMO it was pay now or pay more later.

Has mini seen a gastro?

orthodoc 06-12-2013 12:00 PM

Sorry to hear this, Clod. It's a long road. I still look for possibilities/assistance/solutions for my autistic spectrum son. I'm glad there are a few things you've picked up from your notebook to focus on, though.

Clodfobble 06-12-2013 12:34 PM


Originally Posted by Pete Zicato
Has mini seen a gastro?

Yeah, otherwise that guy who gave him a colonoscopy yesterday would have a lot of explaining to do. :)

xoxoxoBruce 06-12-2013 03:33 PM

:( Is there somebody we can kill or something?

Clodfobble 06-12-2013 05:53 PM

Nah. I'm doing okay, really. It's just one of those things that can never be strictly forward progress, and we have to A.) accept that, and B.) stay vigilant.

I'd say I stay sane with the help of wine, but actually, it's cookies.:kettle: (Closest thing I could find to a cookie icon. Some might say the donut is closer, but I don't like donuts. I do, however, like tea.)

footfootfoot 06-12-2013 08:40 PM

I am very sad, Clodfobble.

Clodfobble 09-22-2013 08:00 AM

So, I finally took the plunge.

Remember back when I went to the hospital with meningitis and they gave me a shit ton of Vancomycin until they could confirm that it wasn't bacterial after all? Well, my digestion has been even more screwed up than usual since then, though I always take an intense dose of probiotics every morning. Meanwhile, the kids have been expanding their diets more and more as they are able to tolerate new things, and we are right about at that point where I could start making one meal for the whole family again, if we were willing to.

So I went ahead and started eating on my kids' special diet. It's been one week now, and I feel fucking fantastic. The cravings for sugar/carbs were moderately intense for the first two days, but I just kept myself distracted and out of the kitchen at all costs. If I got bored, I knew I would eat. Watched several marathon sessions of Breaking Bad to run down the hours.

The evening of the second day and all through the third, I farted constantly, at least once every few minutes the entire time. On the fourth day I realized that I hadn't taken an afternoon nap since I'd started, hadn't even yawned. Also, the constant cycle of depressive thoughts in the background was magically gone. Meanwhile, digestive symptoms are much improved, though definitely not perfect yet.

I'll admit, I don't know yet if I'm going to stay hardcore on it forever. But I'm finding it a lot easier than I thought I would, after those first two rough days.

monster 09-22-2013 08:34 AM

That's great, cf.

Griff 09-22-2013 10:02 AM

That is really cool. I should probably get serious about my eating again.

Pico and ME 09-22-2013 12:25 PM

Yeah, eating a mostly non-processed, whole food diet is essential for good health...mental and physical. It does take a while to eliminate all the 'junk' , but once you do, you don't really miss it all that much. And really, you can still partake, just not as often and in much smaller doses.

Clodfobble 11-05-2013 02:39 PM

It's so frustrating how predictable our roller coaster is.

The GI doc said Minifob could go back on Entocort. Yay! Massive improvement across the board. Everyone is happy.

Minifob finished his 3 months of Entocort. Boo! Everyone is sad. Within just two days his teacher emailed me, asking for a conference about major behavioral shifts.

We are very close to considering anxiety meds. It's so frustrating because we know, without a doubt, that the symptoms are because of his gut. But the meds for his gut cause major long-term problems, and the doc won't let us stay on them. We're not even getting to put a bandaid on the symptoms at tier 1, we're having to do it up at tier 2.

Anyone here have any experience with Clonidine? We haven't had an appointment with the psych yet, but that's one of the frontrunners among my friends with kids on the spectrum.

BigV 11-06-2013 01:37 PM

Clodfobble, I am a COMPLETE AMATEUR in this area, but I wonder if you've done any reading about the idea of a poop transplant. Not a joke. I'll look for a reputable cite, but in the meantime, I'm interested in your opinion.

eta: found and added link that I'd read.

orthodoc 11-06-2013 02:23 PM

Clonidine was one of the few meds that weren't tried with my second son. I'm sorry things are a roller-coaster - it does seem to go that way. But Entocort does involve the risks your doc is concerned about. Besides the bone and joint and other issues, it's an immunosuppressant. I hope you get some good suggestions from the psych visit.

Clodfobble 11-06-2013 05:06 PM

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.

orthodoc 11-06-2013 05:10 PM

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.

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