11-06-2013, 06:11 PM | #931 |
still says videotape
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Sorry about the roller coaster Clod. Any new meds on the horizon?
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11-06-2013, 06:23 PM | #932 | |
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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.
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11-06-2013, 10:03 PM | #934 | ||
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11-06-2013, 10:10 PM | #935 | |
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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. |
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11-06-2013, 10:18 PM | #936 | |
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11-11-2013, 07:43 PM | #937 |
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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. |
11-11-2013, 07:50 PM | #938 |
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That I pretty alarming.
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11-11-2013, 08:00 PM | #939 |
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Good luck with the 6MP. I hope he grows like a weed.
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11-12-2013, 09:46 AM | #940 |
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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
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08-19-2014, 12:42 PM | #942 |
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01-26-2015, 09:09 PM | #943 |
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I assume you has seen this, but just in case not....
http://time.com/3683475/autism-siblings-study/ 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.
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01-27-2015, 08:12 AM | #944 |
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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. |
01-27-2015, 09:27 AM | #945 |
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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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