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Clodfobble 06-16-2009 06:02 PM

Oh happy days!!


We nailed down the final piece of the puzzle in Minifob's unending diarrhea.

It was all because of the... coconut. We had suspicions, because when we gave him this new (awesome, wonderful, and now can-never-be-eaten-again :() coconut yogurt, his poop actually got worse. I wouldn't have thought such a thing was possible, but it was. But it's not like he's having coconut all the time, we mused to ourselves--oh, wait, what's that? There's coconut in the vitamins he takes every single day? Well, what an opportune time for the nutritionist to tell us to go ahead and stop all vitamins for two weeks so we can get a baseline on his pee and poop tests.

And sure enough, three days later we had real, solid poo! :turd: I was still leaving room for the possibility that it was something else in the vitamins causing it, but then we gave him a piece of his (old and stale at this point, but it was all we had) birthday cake, which had coconut sprinkles on top. Diarrhea came back. Hyperactivity came back. Now, a little over 48 hours later, all is well again. VICTORY IS MINE.

Thursday is sample collection day. Then we do the "proctologist's special," and then we can start him back up on some different vitamins that are not tainted with the aforementioned big hairy nuts.


In other news, a friend of mine's husband has been diagnosed with Celiac disease, and they're pretty sure the 9-month-old baby has it too. So I'm helping her get acclimated to her huge new lifestyle change. Now, if I can just get the other friend whose son has a number of behavior and digestive problems to put her kid on the diet, we'll be at an even 50-50 in the Sunday school class. :borg:

DanaC 06-16-2009 06:08 PM

*cheers* yey. Any victory is sweet Clod. I know it's shit that that's another nice thing taken off the diet sheet. But damn, yuo must feel pretty good right now.

Clodfobble 06-16-2009 06:24 PM

Oh, and hey Jim? Thanks for politely but firmly kicking my ass back in this post. I needed it, and you were right. So thanks.

Queen of the Ryche 06-23-2009 10:54 AM

Anything new, Clod?

Flint 06-23-2009 10:57 AM

Quote:

Originally Posted by Clodfobble (Post 574780)
Oh, and hey Jim? Thanks for politely but firmly kicking my ass back in this post. I needed it, and you were right. So thanks.

He's just trying to recruit anybody he can with his hippy rabbit-food propoganda. No thanks, mister! We eat real American in this house.

limey 06-23-2009 12:41 PM

Quote:

Originally Posted by Flint (Post 576776)
He's just trying to recruit anybody he can with his hippy rabbit-food propoganda. No thanks, mister! We eat real Americans in this house.

Fixed it for ya!

Clodfobble 06-23-2009 02:43 PM

Quote:

Originally Posted by Queen of the Ryche
Anything new, Clod?

Well, we're still in the midst of his full intestinal cleanout. (I screwed up and gave him fruit just before the original lab sample collection date, so I didn't end up getting that taken care of until yesterday.) The poop is still a-flowing in a neverending torrent, but at least he doesn't mind the taste of the magnesium citrate, so I'm only nominally holding him down when I give it to him. We're up to 3 Tablespoons every couple of hours with no end in sight.

In other news, I got to be all bitter a few days ago when some insurance paperwork arrived in the mail. The neurologist (whom we had to go see as a formality back in April for an official diagnosis by someone qualified to do so) billed my insurance $500 freaking dollars for what was, no exaggeration, less than 15 minutes of time spent with us, 90% of which was me describing again all the behaviors that I had just thoroughly described to his nurse. But because he's a "real doctor" and he's only charging people indirectly rather than straight out-of-pocket, no one thinks that's a fucking scam.

Yet when I pay less than $120 for over an hour of face-time with a biomedical nutritionist, and I walk away with no less than twenty pages of information specific to my son's current symptoms, including recipes tailored to his known sensitivities, plus then receive several followup emails from the office reiterating all the next steps we talked about at the visit, and replies to my direct questions about things that have come up while following those instructions in the last two weeks... oh no, those people are "so expensive" because they refuse to deal with insurance. I am thrilled to pay Thoughtful House out-of-pocket. So far they have earned every penny of it. And it's so disgusting that people can't put two and two together and realize they are ultimately paying for the ridiculous doctors' fees that go through insurance. Anyway, I'm done with that rant now.

We're going to start a cool new thing next week at the occupational therapy clinic. It's called auditory integration therapy, and it's based on the same principal as all of the other sensory stuff we've been doing, that audio signals are not being interpreted correctly by the brain, and with the right input it can be retrained to function along normal pathways. You use this set of 20-30 CDs that sound just like normal elevator music, but they actually do funky stuff with specific frequencies being played at certain intervals--including the really high and low vibrations that most people can't even hear, but studies have shown the brain is still picking up on them. Ideally you listen to them through headphones, because that directly resonates the bones in the inner ear and makes the strongest connections, but some benefit can still be achieved if you play them over a speaker in a room, as long as the room is pretty quiet and the speakers are of high enough quality to play all the extreme frequencies. I assured our therapist that I do, in fact, have audio equipment up to the task. :) Unfortunately the discs are pretty expensive, since they're meant to be purchased by therapy offices rather than individuals, and I've been told that the copy-protection on them is extremely good. So we're going to do the full set over time in her office, and in the meantime I'm going to order a single disc for home use and see what kind of benefits we get from playing them through the speakers.

But the real reason I want one for home use is for Minifobette. She's inching closer and closer to having her own diagnosis, and one of her traits is definitely auditory defensiveness (as opposed to Minifob who was all about the tactile defensiveness, refusing to wear long-sleeve shirts or have his hair cut and such.) She screams and covers her ears at specific noises that aren't especially loud or grating, but they freak her out every time. Like when the water is running in the downstairs sink, or whenever this one character is talking on a particular Elmo DVD. He can be on the screen just fine, but as soon as he talks she throws her hands up and starts shrieking. Supposedly the misinterpreted audio signals are causing her to hear certain frequencies much louder than they actually are. Auditory Integration Therapy has been shown to help all kinds of autistic kids, but of course the greatest benefits are seen by those who have obvious auditory sensitivities. Anyway, it's going to be hard enough to get one kid to sit there with headphones on for any length of time, but two would be extremely difficult. So hopefully we'll get at least some benefit by just broadcasting it in the room while they're playing together.

But man I wish I could see what those waveforms look like...

Edit to add: Oh yeah, crazy story about one of the series of AIT discs: the discs all have different music on them, since the music itself isn't really what's important, and a handful of them have nature sounds like whalesong and stuff. The people who developed these particular CDs said that at first, the groups of autistic kids they were testing them on were freaking out and hated the ones with dolphin sounds on them, and they got one of the older ones who spoke well to explain that the dolphins sounded "upset," that she could tell they were "locked up in prison." So they scoured audio libraries until they found dolphin sounds that were definitely recorded out in the ocean instead of from dolphins in captivity somewhere, and the kids did a complete 180 and said they liked the sounds now. The engineers swore they couldn't hear any difference between the two kinds of dolphins, but all the kids agreed that the ocean dolphins were "happy."

Flint 06-23-2009 02:52 PM

Quote:

Originally Posted by Clodfobble (Post 576835)
Edit to add: Oh yeah, crazy story about one of the series of AIT discs: the discs all have different music on them, since the music itself isn't really what's important, and a handful of them have nature sounds like whalesong and stuff. The people who developed these particular CDs said that at first, the groups of autistic kids they were testing them on were freaking out and hated the ones with dolphin sounds on them, and they got one of the older ones who spoke well to explain that the dolphins sounded "upset," that she could tell they were "locked up in prison." So they scoured audio libraries until they found dolphin sounds that were definitely recorded out in the ocean instead of from dolphins in captivity somewhere, and the kids did a complete 180 and said they liked the sounds now. The engineers swore they couldn't hear any difference between the two kinds of dolphins, but all the kids agreed that the ocean dolphins were "happy."

I'm tellin' ya, it's a superpower.

Queen of the Ryche 06-23-2009 04:27 PM

Wow - glad to hear the mag citrate is tolerable for him - I cried at the thought of you having to restrain him like that. And I'm sure you're glad that part is almost over!

Agree about "real doctors" vs. people like Thoughtful House - sounds like they know exactly what they're doing because that is ALL they do. I'd rather pay them for their true understanding than him for what he read out of a book who knows how long ago.

And love the AIT - it makes sense - hope it works with both of them! My mom's house cleaner (wow, that sounds snobby) has a son who is blind and autistic - my mom suggested piano lessons - my old piano teacher has raised her own autistic daughter for twenty something years, so she knew what she was getting in to - the most patient, kind, loving woman, who gets truly happy and excited when she sees half an ounce of progress - and the kid is THRIVING off of it.

Music really is the best invention ever.

xoxoxoBruce 06-24-2009 03:02 AM

How expensive are the audio cds?

Clodfobble 06-24-2009 03:17 AM

About $50 each. Not bad, really, unless you're trying to get the whole set. For some of the programs, you're supposed to do the entire set in order, progressing from one to the next. Therapy offices usually buy these, because they're more intense and thus more effective. With others, though, all of the discs pretty much serve the same purpose, the only reason you'd want more than one is to mix it up and not let your kid (or their brain) get too used to one exact set of sounds. They say you can help drag it out by putting the tracks on random, plus we have a little visualization app on our DVR that will randomly select different themes and patterns each time a song comes up, so I think one or two discs will go pretty far for us. Plus, you're only supposed to listen for a maximum of 30 minutes at a time, and some parents say their kid gets awfully fidgety after about 15 anyway.

limey 06-24-2009 05:13 AM

Quote:

Originally Posted by Queen of the Ryche (Post 576867)
Wow - glad to hear the mag citrate is tolerable for him - I cried at the thought of you having to restrain him like that. And I'm sure you're glad that part is almost over!

Agree about "real doctors" vs. people like Thoughtful House - sounds like they know exactly what they're doing because that is ALL they do. I'd rather pay them for their true understanding than him for what he read out of a book who knows how long ago.

And love the AIT - it makes sense - hope it works with both of them! My mom's house cleaner (wow, that sounds snobby) has a son who is blind and autistic - my mom suggested piano lessons - my old piano teacher has raised her own autistic daughter for twenty something years, so she knew what she was getting in to - the most patient, kind, loving woman, who gets truly happy and excited when she sees half an ounce of progress - and the kid is THRIVING off of it.

Music really is the best invention ever.

Yup. To all of this, but especially to the music stuff.

Clodfobble 06-24-2009 07:14 AM

It's funny, because coincidentally we just signed both kids up for a weekly music class over the summer. It's one of those "mommy and me" style things for preschoolers, except instead of incorporating gymnastics or art, this one focuses entirely on music. Both the kids enjoyed the demo class we attended, but I was still on the fence until I saw in their scheduler that they offer a class just for developmentally-delayed kids--including the use of social stories and picture schedules, so it would seem they actually know what they're doing. That sealed the deal for me right away. My only complaint was that they hadn't advertised this anywhere that I had come across, it wasn't even mentioned in their own brochure. If they advertised this thing in the right places, I guarantee you they'd have enough people for 2-3 classes, at least. I emailed the information to our therapist in case she wanted to pass it on to any of her other clients, so hopefully it'll be a good chance to meet other parents in our area--confidentiality laws prevent us from meeting anyone through our therapist or school district, even if both parties are interested in doing so.

Clodfobble 07-15-2009 04:44 PM

Aaaaand it's official. I have two children with autism.

Fuck autism.

Anyway, we had our next visit at Thoughtful House yesterday, the first one with the actual doctor, and it was just as enlightening and encouraging as the nutritional consult. We expected the stool tests to show yeast, and they did show a moderate fungal infection, but surprisingly they also showed a strong bacterial infection. I didn't realize that was possible, the two being natural enemies, but apparently they have either created their own equilibrium or are simply colonized in different sections of his gut. Furthermore, the culture showed exactly zero beneficial bacteria inside him, despite the fact that we've been giving him acidophilus supplements every day. So either my supplements are crap and dead on arrival (no way to know for sure, but it is a reasonable-quality brand,) or the infection is bad enough that the good bacteria have no chance of survival in that environment. So starting today he is on a prescription for a strong antibiotic, to be immediately followed by an antifungal drug. After that comes new, much stronger probiotics, and a collection of vitamin and mineral supplements to address the other nutritional deficiencies his tests showed.

But meanwhile, the tests also came back showing extremely high levels of lactic acid, but low-to-normal levels of a substance called pyruvic acid. Taken together, these readings indicate that he may have a relatively rare subset of autism (about 5-10% of the autistic population) that is caused by a mitochondrial disorder, which is genetic and incurable. (This would be the same type of autism that Hannah Poling has, by the way.) So if the mitochondrial disorder is confirmed, it means it would be impossible for him to ever make a "full" recovery, i.e. one where he could stop taking his medicines or go off his diet. However, it's still possible he could have a "managed" recovery, where the continued medicine/supplements and dietary restrictions would allow him to be indistinguishable from peers. It all depends on how severe the disorder is and how it would manifest over the rest of his life--many people live with mitochondrial disorders for decades and don't even know it. At any rate, confirming it would at least give us a clearer picture of how to proceed with some aspects of his treatment, so we had another round of blood testing today, and should know the results in a few weeks. A word to the wise: blood draws on an incredibly strong 3-year-old are not advisable, especially when they have to take eleven damn vials. He knocked out the needles so many times, I had to restrain him for twenty minutes to get it all done. My muscles were shaking afterwards from the workout, I kid you not. But once he was free he got over it within two minutes, so that was nice.

Meanwhile, Minifobette has started her intake procedures with Thoughtful House, and will get her own occupational therapy sessions once Minifob starts school in August. Whee.

jinx 07-15-2009 07:59 PM

So... Hanna Poling's parents won their vaccine injury case - with the CDC admitting that because of her mitochondrial disorder, she was injured by vaccines and developed autism... although I don't think they have decided on the monetary 'award' yet (but Bailey Banks (mmr injury) will receive over a million dollars over his lifetime for the care he will need because of vaccine induced ADEM leading to autism).

What does that mean for you guys?

Fuck autism, cancer, coma...

Edit: Are you getting your probiotics out of a refrigerator at a popular health food store that goes thru stock quickly - and checking for the freshest date? That shit dies quickly in the bottle...

Are there any hippy farms around you that make goat yogurt? That might be the better route despite the 'dairy' connection... actually a lot of people believe that the milk sensitivity thing is limited to only some types of cows ie. holstein bad / gurnsey good.


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