My Kid is a Damn Nutter - Page 38

Clodfobble · 12-01-2009, 06:39 PM

Yeah, I saw a writeup on it; they used a Denver model of relational interaction based off the older method of "floor-time." Which is all well and good, right up until you find out how much it costs... Admittedly, since it only takes 15 hours a week to be effective rather than the 40 recommended for ABA, the savings are relatively tremendous--it's like being allowed to buy a yacht for 60% off.

Pie · 12-14-2009, 03:03 PM

Heya Clod -- how are the kids doing on the 'elemental diet'? Is that working?
I hope everything is still going okay with school!

dar512 · 12-14-2009, 03:42 PM

Clod, you've got your kids on elemental diets? That's interesting because I'm reading a book on Crohn's that recommends Total Enteral Nutrition as a means to remission.

Clodfobble · 12-14-2009, 05:15 PM

Yes, both of them are on the elemental diet, specifically a brand called Elecare. It's been moderately helpful for the girl, who started a little over 8 weeks ago, but it's been absolutely fantastic for the boy, who will hit the 3 week mark tomorrow. We started on a Tuesday... by Thursday he was drinking it without bargaining, and by Friday he wasn't asking for real food at all, even when he saw my stepkids eating some of his favorite foods for lunch (we did try to keep him away so he wouldn't be jealous, but he got in the kitchen anyway.) By the time he went back to school on Monday, he was perfectly content to pull out his two drink bottles at lunch and snack time. Also, that morning he walked in and spontaneously greeted all his teachers and classmates by name, which previously he wouldn't do even with prompting. That's one more IEP goal checked off the list, and his speech and cognition have just continued climbing as the days go by.

Minifobette's been progressing, but it's of the three-steps-forward-two-steps-back variety. In the first few days after starting it, she was showing very big gains for her, with better eye contact, showing curiosity, and babbling constantly instead of being mostly silent. But then it sort of melted away again. We blamed the antifungal that she had just started, because often the antifungals can make you worse before they make you better. But she didn't ever get better, and when the course of antifungals was done, she only very slowly began getting some sounds back--she's still not where she was in those first few days. Plus, she's still having totally liquid poop, which is obviously bad. Minifob was having it too after he started the formula, but then I adjusted some of his supplements and added a vitamin called biotin, and his very next poop was 100% solid. Hooray! So I'm about to add biotin into Minifobette's cocktail to see if it does the same for her, but I have to wait a few days because we just started a different thing before the biotin did its magic on Minifob, and I'm trying to keep her variables as separate as I can.

Dar, have you ever heard of the Specific Carbohydrate Diet? It's a little less extreme (and a lot less expensive) than elemental formulas, and I've known some people who showed comparable digestive improvements on it, especially adults without additional food allergies to contend with. It's our next pitstop once we start reintroducing foods.

Pie · 12-14-2009, 10:19 PM

Yay! So glad to hear that there's progress!

dar512 · 12-15-2009, 12:22 PM

Quote:

Originally Posted by Clodfobble

Dar, have you ever heard of the Specific Carbohydrate Diet? It's a little less extreme (and a lot less expensive) than elemental formulas, and I've known some people who showed comparable digestive improvements on it, especially adults without additional food allergies to contend with. It's our next pitstop once we start reintroducing foods.

No, but that's good info for an in-between choice.

How's the flavor of the Elecare?

Clodfobble · 12-15-2009, 03:28 PM

Weeeell... The unflavored kind is super nasty. If you ever had your kids on baby formula, it's a lot like that. The vanilla flavor is okay--not great by any means, but mostly tolerable. Those are the only two flavors that Elecare comes in, but there's another brand called Neocate that comes in at least a half a dozen flavors, and supposedly those are better according to some of the other parents. I think they even have a chocolate flavor.

dar512 · 12-15-2009, 03:42 PM

I'll start with something that tastes good. I can always fall back to the nasty stuff if I have to.

Clodfobble · 12-15-2009, 03:44 PM

Are you going to be able to get it covered by insurance?

dar512 · 12-15-2009, 05:49 PM

I don't know. I see nutritionist next week.

Is it expensive?

Clodfobble · 12-15-2009, 06:41 PM

Oh yes.

My three-year-old requires 1500 calories a day, which translates to 24 cans/month = ~$800. I think an adult male requires around 2500 calories, or around $1300/month.

We had to do a little dance with our insurance to get it covered as medically necessary, but in the end we were destined to win because many states (including Connecticut, where they're based) legally require them to cover it for anyone under the age of 12, as long as you have a medical doctor's prescription.

These formulas were originally developed specifically to treat Crohn's disease, so I'd imagine you have a really good shot at getting it covered as well. But the nutritionist's recommendation probably won't be good enough; you'll need to get your gastroenterologist to write an official prescription for it. (This would only be for insurance purposes, though, anyone is allowed to order it online.)

dar512 · 12-16-2009, 09:25 AM

Quote:

Originally Posted by Clodfobble

I think an adult male requires around 2500 calories, or around $1300/month.

Holy crap. I'll definitely look into insurance.

Clodfobble · 12-16-2009, 10:23 AM

Make sure you always reference it as a "complete nutritional formula," and not a "special dietary food," because one is covered and the other never is.

Pie · 12-16-2009, 10:42 AM

Another reason why I love the Cellar!

Clodfobble · 12-18-2009, 11:14 PM

I'd post this in the "What's making you happy" thread, but I already posted in there once today. This blog post of my newest fan almost brought me to tears:

The new Gluten free diet and my daughter

Quote:

I'm loving this site. SERIOUSLY. Loving it! She's has videos of her son before and after the diet... The video of her son (before the diet)- is SO similar to my daughter. Screaming, running, spinning, yelling, walking on her toes, hands flapping, all of it.

And only TWO weeks into this diet ( that I've worked so hard on) she showed me that she needed her diaper changed by lifting her dress and patting her diaper!!! Then sat on the potty ( that she'd been taking a part and throwing around the house since I bought it months ago). And later on, she pretend played with a small stuffed toy chicken, we have, jumping up and down on her alphabet blocks!!!

...

She's in there- I saw it today- and she's coming out.
This is a momentous day- December 18th, 2009. A day of miracles.

12-01-2009, 06:39 PM	#556
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Yeah, I saw a writeup on it; they used a Denver model of relational interaction based off the older method of "floor-time." Which is all well and good, right up until you find out how much it costs... Admittedly, since it only takes 15 hours a week to be effective rather than the 40 recommended for ABA, the savings are relatively tremendous--it's like being allowed to buy a yacht for 60% off. __________________ My book My other book My spirit animal

12-14-2009, 03:03 PM	#557
Pie Gone and done Join Date: Sep 2001 Posts: 4,808	Heya Clod -- how are the kids doing on the 'elemental diet'? Is that working? I hope everything is still going okay with school! __________________ per·son \ˈpər-sən\ (noun) - an ephemeral collection of small, irrational decisions The fun thing about evolution (and science in general) is that it happens whether you believe in it or not.

12-14-2009, 03:42 PM	#558
dar512 dar512 is now Pete Zicato Join Date: May 2003 Location: Chicago suburb Posts: 4,968	Clod, you've got your kids on elemental diets? That's interesting because I'm reading a book on Crohn's that recommends Total Enteral Nutrition as a means to remission. __________________ "Against stupidity the gods themselves contend in vain." -- Friedrich Schiller

12-14-2009, 05:15 PM	#559
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Yes, both of them are on the elemental diet, specifically a brand called Elecare. It's been moderately helpful for the girl, who started a little over 8 weeks ago, but it's been absolutely fantastic for the boy, who will hit the 3 week mark tomorrow. We started on a Tuesday... by Thursday he was drinking it without bargaining, and by Friday he wasn't asking for real food at all, even when he saw my stepkids eating some of his favorite foods for lunch (we did try to keep him away so he wouldn't be jealous, but he got in the kitchen anyway.) By the time he went back to school on Monday, he was perfectly content to pull out his two drink bottles at lunch and snack time. Also, that morning he walked in and spontaneously greeted all his teachers and classmates by name, which previously he wouldn't do even with prompting. That's one more IEP goal checked off the list, and his speech and cognition have just continued climbing as the days go by. Minifobette's been progressing, but it's of the three-steps-forward-two-steps-back variety. In the first few days after starting it, she was showing very big gains for her, with better eye contact, showing curiosity, and babbling constantly instead of being mostly silent. But then it sort of melted away again. We blamed the antifungal that she had just started, because often the antifungals can make you worse before they make you better. But she didn't ever get better, and when the course of antifungals was done, she only very slowly began getting some sounds back--she's still not where she was in those first few days. Plus, she's still having totally liquid poop, which is obviously bad. Minifob was having it too after he started the formula, but then I adjusted some of his supplements and added a vitamin called biotin, and his very next poop was 100% solid. Hooray! So I'm about to add biotin into Minifobette's cocktail to see if it does the same for her, but I have to wait a few days because we just started a different thing before the biotin did its magic on Minifob, and I'm trying to keep her variables as separate as I can. Dar, have you ever heard of the Specific Carbohydrate Diet? It's a little less extreme (and a lot less expensive) than elemental formulas, and I've known some people who showed comparable digestive improvements on it, especially adults without additional food allergies to contend with. It's our next pitstop once we start reintroducing foods. __________________ My book My other book My spirit animal

12-14-2009, 10:19 PM	#560
Pie Gone and done Join Date: Sep 2001 Posts: 4,808	Yay! So glad to hear that there's progress! __________________ per·son \ˈpər-sən\ (noun) - an ephemeral collection of small, irrational decisions The fun thing about evolution (and science in general) is that it happens whether you believe in it or not.

12-15-2009, 03:28 PM	#562
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Weeeell... The unflavored kind is super nasty. If you ever had your kids on baby formula, it's a lot like that. The vanilla flavor is okay--not great by any means, but mostly tolerable. Those are the only two flavors that Elecare comes in, but there's another brand called Neocate that comes in at least a half a dozen flavors, and supposedly those are better according to some of the other parents. I think they even have a chocolate flavor. __________________ My book My other book My spirit animal

12-15-2009, 03:42 PM	#563
dar512 dar512 is now Pete Zicato Join Date: May 2003 Location: Chicago suburb Posts: 4,968	I'll start with something that tastes good. I can always fall back to the nasty stuff if I have to. __________________ "Against stupidity the gods themselves contend in vain." -- Friedrich Schiller

12-15-2009, 03:44 PM	#564
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Are you going to be able to get it covered by insurance? __________________ My book My other book My spirit animal

12-15-2009, 05:49 PM	#565
dar512 dar512 is now Pete Zicato Join Date: May 2003 Location: Chicago suburb Posts: 4,968	I don't know. I see nutritionist next week. Is it expensive? __________________ "Against stupidity the gods themselves contend in vain." -- Friedrich Schiller

12-15-2009, 06:41 PM	#566
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Oh yes. My three-year-old requires 1500 calories a day, which translates to 24 cans/month = ~$800. I think an adult male requires around 2500 calories, or around $1300/month. We had to do a little dance with our insurance to get it covered as medically necessary, but in the end we were destined to win because many states (including Connecticut, where they're based) legally require them to cover it for anyone under the age of 12, as long as you have a medical doctor's prescription. These formulas were originally developed specifically to treat Crohn's disease, so I'd imagine you have a really good shot at getting it covered as well. But the nutritionist's recommendation probably won't be good enough; you'll need to get your gastroenterologist to write an official prescription for it. (This would only be for insurance purposes, though, anyone is allowed to order it online.) __________________ My book My other book My spirit animal

12-16-2009, 10:23 AM	#568
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Make sure you always reference it as a "complete nutritional formula," and not a "special dietary food," because one is covered and the other never is. __________________ My book My other book My spirit animal

12-16-2009, 10:42 AM	#569
Pie Gone and done Join Date: Sep 2001 Posts: 4,808	Another reason why I love the Cellar! __________________ per·son \ˈpər-sən\ (noun) - an ephemeral collection of small, irrational decisions The fun thing about evolution (and science in general) is that it happens whether you believe in it or not.

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