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Old 09-28-2006, 06:47 PM
RathyKay RathyKay is offline
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Join Date: Aug 2006
Posts: 144
15 yr Member
RathyKay RathyKay is offline
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Join Date: Aug 2006
Posts: 144
15 yr Member
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Quote:
Originally Posted by hunterjjumper View Post
Do you think sometimes that kids with these medical problems feel they have no control over anything in their life, that they try to gain control in other inappropriate areas?
I was just discussing something similar with Tom's teacher. Tom is doing all he can not to pee at school. They take him regularly to the bathroom with all the other kids, he sits on the toilet and refuses to go. Meanwhile, I never have this problem. Surprise, surpise, he has accidents at school. Anyway, his teacher was saying this might be his way of having some control at school, since most of the school day he is being told where to go and what to do next. She has another kid who is not talking at all, while the mom says the child speaks in short phrases at home... his way of controlling something / anything at school.

Quote:
Originally Posted by hunterjjumper View Post
I have thought about modifying her diet....actually the whole family. I don't know how I would do that though. She lives on cheese, yogurt, milk, and potato chips, with a little bit of broccoli tossed in now and then. What do you replace those with? I was so happy because on Tuesday night she actually ate a whole apple, she hates apples! And what is gluten? Isn't it in everything like the whole grain side of the pyramid?!
They do make soy cheeses (and I've heard they're not very good) as well as soy yogurt (haven't tried that either). There are several different milk subs (almond, rice, soy, and potato milks off the top of my head). When I decided to try going dairy-free, I had gluten-free as a possibility in the back of my mind, and I had read that soy can also be a problem (I was doing some autism reading at the time), so I didn't want to substitute with something that had gluten or was heavy on soy only to have to find something else at a later date if we decided to remove it. (We did Vance's DariFree - potato-based - if you're interested: http://www.vancesfoods.com/) Tom was never a big cheese or yogurt fan, so that wasn't hard to give up. He actually preferred his pizza without cheese, as did Samantha.

Gluten is the protein found in wheat, rye, and barley, and there are cross-contamination issues with oats. So, while it's not the "whole" grain side of the food pyramid, it's a BIG chunk for the standard American diet. There are lots of substitutes. I use a lot of tapioca, quinoa and potato starch. Rice is a popular baking substitute, but Tom had a seizure from brown rice, and we're avoiding all of it. And, we have our very own Gluten Sensitivity / Celiac Disease forum (http://forums.braintalk2.org/forumdisplay.php?f=13) That bunch is very research-oriented. (Check out Cara's Gluten File http://jccglutenfree.googlepages.com/) Unlike a lot of other GF forums, they don't believe Celiac Disease is the only result of gluten damage; they're fully accepting of the neurological problems.

Tom likes his spaghetti, and thankfully, our spaghetti sauce was already dairy and gluten-free. I did corn noodles for awhile, but once I realized Tom enjoyed spaghetti squash just as well, that's all I've been using. He also loves split pea soup, and we actually had it almost every week this summer. I found a bread recipe, so he can have his peanut butter sandwiches for lunch, if he's not having leftover spaghetti or soup. Depending on where you live, you can find a lot of this pre-made... we just have the rice problem.

It's been just over 2 years since I took Tom off of dairy. We went GF in February... so a year and a half between the two. Part of my goal of going GF was to get us eating healthier... not substituting wheat flour brownies for GF brownies, but eating more vegies and fewer sugary treats. Since going GF, Tom is trying more foods. He has always been the pickiest eater of the family (and someone told me that picky eating can be a sign of food allergies). But, his food list has dramatically increased since going GF. I'm not going to pretend that he's wonderful now, but I can get him to try a bite of everything in exchange for a bite of the one food he really wants (sausage, roast chicken, ham, steak, pork chop, whatever we're having for supper). A bite for a bite; repeat. Before, he'd refuse supper and leave the table... he'd rather starve. Or, if he tried the food, he'd gag, with a good chance of tossing the little bit of supper he'd already eaten. Now, the gagging (and mild vomitting) are gone. He is now eating more of the meals that aren't his favorite. I still try to alternate one favorite dinner with a least favorite dinner. And, he's gained 3 pounds! (He's a little boy.)

I'm not sure what to tell you about making changes all at once, versus one at a time. Obviously, I mulled over going GF for a long time. Dairy was the "biggie" for Tom, in that we were able to take him off all meds afterwards. And, every seizure since (5 so far), we've been able to pinpoint the trigger. If you do everything at once, it's hard to say what gave you your results.

I'm starting to ramble. Hope this helps. If you have any other questions, let me know.
__________________
Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.

Last edited by RathyKay; 09-28-2006 at 11:36 PM. Reason: Finish the post
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