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jinx 03-28-2009 08:35 PM

Awesome.

Clodfobble 03-30-2009 10:32 AM

Oh, and another thing the book explained: it is the same single enzyme that digests both gluten and casein. Thus, if you have a problem with one (a problem in the opioid sense, that is, not just lactose intolerance or something) you by definition have a problem with the other. Goddamn hippies on the internet could get themselves taken a lot more seriously if they would bother to medically justify their claims, you know?

We are now on day 4 of 100% gluten-free. After two more baking attempts, I found a homemade gluten-free bread mix he will tolerate, if grudgingly. We have not yet had the opportunity to have the "no more Cheerios" battle, so we'll see how that goes eventually. Yesterday's awesome discovery is that he can (and will) eat a normal entree at Chipotle on this diet. I've also come to accept that Minifobette is going to have to be on the diet too, because I can't keep her brother from poaching unsafe foods from her tray or off the floor under her chair. But since we're starting early, she'll never know what she's missing.

Queen of the Ryche 04-01-2009 02:47 PM

Did you hear anything from Dr. Jepson? And how have days 5 and 6 been? I like your attitude with Minifobette - she probably won't figure it out until later in life when you'll be able to keep her food separate from his more feasably. (Don't forget to breathe. You're doing a great job.)

lookout123 04-01-2009 06:02 PM

Fob rocks. It just needed to be said again.

Juniper 04-01-2009 07:04 PM

This is awesome news!

I may be doing some of this too - my son is showing some ADHD symptoms so we are going to re-examine his diet. Nothing as major as yours though.

What an inspiration!

Clodfobble 04-01-2009 09:34 PM

Quote:

Originally Posted by Queen of the Ryche
Did you hear anything from Dr. Jepson?

Things are progressing through emails with the staff, but they are currently scheduling initial phone consults (which do last an hour, so I can at least expect a fair amount of conversation to be had) 4 weeks out. What happens after that depends on how the consult goes.

Quote:

And how have days 5 and 6 been?
I wish I could find a way to be more ecstatic without sounding ridiculous. The last two days have been awesome. His behavior has been unbelievable--not even a whine about a single thing, all day today. The last three naps/bedtimes he has just followed me upstairs without a peep when I announced it was time to get ready for bed. And his language usage is through the roof, so much so that the ECI woman who came today told me we'll need to completely rewrite his official program goals the next time she comes, because he's suddenly doing everything we'd been working on. For example, we'd been doing picture therapy to try to get him to consistently identify things by their names instead of sometimes resorting to using the item's color instead, but that's completely irrelevant when he now says to me, "Go downstairs, eat yellow waffle ah jelly. Open the gate, please." At the same time, he is more hyperactive than he has been recently, mostly in the form of running in circles around the house for fun and doing headstands, but he's doing it quietly, and he can be diverted to another task when necessary without freaking out, so he's welcome to run to his heart's content as far as I'm concerned. He's also been lining things up more than he had been, but he doesn't get mad if they get knocked out of place.

We had the Cheerios battle yesterday, and he gave up relatively easily. Still won't eat any of the three cereal options he can have, but he hasn't bothered to ask for Cheerios again, at least. We've also started him on some general vitamin supplements that are supposed to promote intestinal healing. I don't know if they'll do any good, but I've made sure they are harmless in any reasonable dosage, so I don't mind just giving them to him blindly until he can actually get some lab work done, either at the specialty clinic or through his regular pediatrician.

Speaking of his pediatrician, I'm gearing up for a little headbutting with her in a couple weeks. Minifobette is due for her one-year checkup, which is about the time they recommend the MMR vaccine. Most people don't realize that Dr. Wakefield's original study connecting autism and the MMR vaccine was never intended to demonize vaccines, and certainly never intended to become the political touchstone it has. It barely mentioned thimerosol in passing; the main point was that this group of autistic kids had a high incidence of chronic, live measles in their digestive systems, and that measles is known to cause intestinal damage, which is of course the major theory behind all the diet modifications, that these kids have "leaky guts." Getting measles for real would be even more devastating for these kids who are for some reason more susceptible to intestinal damage, so the vaccinations are still in theory a good idea, it's just a question of timing it when their immune systems are strongest, and perhaps not giving them all three diseases (measles, mumps, and rubella) all at once. So anyway, I've special-ordered the three vaccines separately from a pharmacy in Massachussetts, and I'm going to have them give Minifobette just the measles shot at this next checkup, while she's still breastfeeding so my added antibodies will give her the best chance to completely fight it off. They can do the other two at her 15-month checkup; those diseases never affect the gut so they pose no particular risk to her. The office staff were audibly annoyed at having to deal with my questions and my special order, but they complied without a fight, so I imagine the pediatrician isn't going to do much more than maybe roll her eyes when I inform her of my plan.

Please forgive the massive amount of detail, but I have a few family and friends following this thread now so I don't have to keep updating everyone individually. :)

glatt 04-02-2009 08:55 AM

Quote:

Originally Posted by Clodfobble (Post 552106)
I have a few family and friends following this thread now so I don't have to keep updating everyone individually. :)

OK guys, we have to be on our best behavior now. Her family is watching!


The information you've posted is really interesting. I have never closely followed the whole MMR/autism thing. The intestinal damage side of it is brand new to me and actually makes a lot of sense. It's like your comment before about how the hippies on the internet would be taken a lot more seriously if they would explain the scientific rational behind their rants.

Shawnee123 04-02-2009 09:01 AM

I'm amazed at what you've learned about diet's connection. Who woulda thunk?

You are doing great!

Clodfobble 04-02-2009 10:03 AM

Quote:

Originally Posted by glatt
The intestinal damage side of it is brand new to me and actually makes a lot of sense.

There are literally dozens of diseases that they're beginning to connect to problems with the digestive tract. The specific thing with autism (at least Minifob's brand of it) is that he also happens to have the inability to digest casein/gluten. A different person could be missing some completely different enzyme, so their hypothetical leaky gut would result in some other protein getting into their bloodstream that is known to cause, say, rheumatoid arthritis, or liver inflammation, or any number of things...

classicman 04-02-2009 10:11 AM

Still in awe and blinded by Clods awesomeness. :notworthy:

Undertoad 04-02-2009 10:13 AM

In the case of milk protein lactose, it's lack of enzyme lactase that's the problem... so brand Lactaid is just milk with a little lactase added. Maybe the answer is to add the appropriate enzymes?

jinx 04-02-2009 11:22 AM

Clod you're doing your homework and making informed decisions, that makes you immune to eye rolling and the like.

Queen of the Ryche 04-02-2009 12:19 PM

I am so thrilled to hear about the last couple of days! I can only imagine how that makes you feel - Please on the end of a complete sentence? Amazing!!! I am so proud of you for sticking to your guns, doing the research, doing what you know works - You are probably the strongest mommy I have ever heard of - Most would have thrown their hands up and left it to doctors or shrinks at this point. Three cheers for Clod, and for Mini for his progress!!!

lookout123 04-02-2009 12:26 PM

Quote:

just followed me upstairs without a peep when I announced it was time to get ready for bed.
Hell, Mrs Lookout won't even do that. ;)

You're doing great lady.

Clodfobble 04-02-2009 03:18 PM

Quote:

Originally Posted by Undertoad
In the case of milk protein lactose, it's lack of enzyme lactase that's the problem... so brand Lactaid is just milk with a little lactase added. Maybe the answer is to add the appropriate enzymes?

Yes, I have since discovered that you can purchase the appropriate enzyme supplements. But they are expensive, and even the makers of the product tell you not to try to use it as a substitute for the elimination diet. They suggest instead that you do the diet, give your intestines many months to heal, and then slowly begin to reintroduce small amounts of casein/gluten in conjunction with the enzymes, to see if you can tolerate it. It's definitely a possibility for when he's older though, and has the self-control to understand why he's on the diet and why it's important to keep up with it. And maybe they'll be cheaper by then too. :)


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