KevinInMA Posted January 10, 2011 Author Report Share Posted January 10, 2011 Ya know, I just realized I never actually listed any of the supplements he's taking. Right out of the gate Thea started him on quite the array of pills. I think he's up to 13 or so a day now. I am SO lucky to have a kid that can handle giant pills and has no problem taking them twice a day. This, of course, is personalized for my kid. I'm sure yours will be a little different. Here's what he's been taking since day 1: Vital Nutrients 180mg Fish Oil - 1/Day Allergy Research Group Buffered C - 3/Day Thorne Children's Basic Nutrients - 3/Day Thorne D-1000 - 2/Day Kirkman EnZymAid - 2/Day Kirkman ProBio Gold - 2/Day (each 15 mins before breakfast and dinner) He's still on the Tenex too but thats going to come out starting next week, I think. Link to comment Share on other sites More sharing options...
KevinInMA Posted January 10, 2011 Author Report Share Posted January 10, 2011 (edited) I'm starting to wonder about waxing and waning or even the placebo affect here. I saw some eye rolling this morning. Some finger junk this afternoon, and some of that breathing thing shortly thereafter. He had some gluten free whole foods cornbread this morning. Had a little dairy product in it but dairy hasn't been a problem since we started slowly testing it. He may have had too much maple syrup with it. This is where this stuff starts to get REALLY complicated. He's also REALLY wired for some reason. Maybe it's just a fluke. ETA: He's had a runny nose lately. I wonder if that has anything to do with it. Maybe he's coming down with something. I think some of you have mentioned that tics (or things that look like tics) are often brought on by an impending sickness. Edited January 10, 2011 by KevinInMA Link to comment Share on other sites More sharing options...
KevinInMA Posted January 11, 2011 Author Report Share Posted January 11, 2011 More eye rolling today. I wonder if he's just tired. Can't figure this one out. I gave him some allergy drops in case it's something environmental. Hope it helps. I'm not liking this right now. Link to comment Share on other sites More sharing options...
Familyof5 Posted January 12, 2011 Report Share Posted January 12, 2011 Hi Kevin, I love reading your posts. I just wanted to share my recent experience with you. My daughter, 11, started with great success on Bonnies vitamins and gluten free diet this fall. Her response to those changes was magnificent. She sat still, focused better, tics decreased to virtually none, and she began to have a carefree happy attitude (what all 11 years old should have). Then, about 2 days after Christmas, wouldn't you know her eye roll reappeared and so did her breathy exhale tic. It has increased and decreased since Christmas but hasn't returned to pre-xmas state yet. I am convinced that the wrapping paper and toys in cardboard boxes that infiltrated my house since xmas is the cause of her increase. The same increase in symptoms occured in 2008 and 2009 when she wasn't on Bonnie's vitamins or gluten free. I know this is a tough concept to grasp. But I believe that there are biotoxins, probably mold toxins (as their #1 source of food is paper) attached to the wrapping paper and cardboard. Ripping it up, throwing around your house releases airborne spores everywhere and they are hard to get rid of, which is why my daughter's eye roll hasn't gone away yet. This is my experience that I thought I'd share. All three of my children have this problem, but my daughter's symptoms were so similar to your sons that I thought I'd write about it. If you'd like to test out my theory, just wash the floor/room where most of the wrapping paper was opened. Just washing the floor will once again agitate the spores that have settled. For my family (including myself and husband), this will continue to cause an increase in tics until all the spores have been vacuumed away to the oblivion called the central vac!!!! It is maddening trying to keep a lid on the things that cause tics....but wanted to share my experience. Next year = no wrapping paper. Family of 5. Link to comment Share on other sites More sharing options...
KevinInMA Posted January 20, 2011 Author Report Share Posted January 20, 2011 Sorry everyone. I've been slacking big time on this blog. Now's not the time to let it fade. The latest: We've spent the last couple weeks wondering when we can start adding things in. Then he started coughing a bit, then it went away and became no big deal again.... We've also been trying to put the pieces together with a little detective work and right now it SEEMS like the cough is caused by some sort of post-nasal drip and the eye roll (at least initially before it becomes a tic) seems to be caused by dry, itchy eyes. These issues can often be resolved with simple hydration. If this kid would drink enough (and by enough, I mean A LOT) it would alleviate both of these problems so we're on a quest to get this kid to properly hydrate himself. So on top of that, a lot of kids in the gym have been getting sick- namely strep. He's been coughing more over the past couple days and tonight he came out of the gym coughing a lot and said his throat was VERY painful and scratchy. It was interesting cuz the other parents that were there said "Oh, I hope it's not strep!" and all I could think of was "Oh, I hope it's just strep!" We'll find out tomorrow, I guess. On top of that, we went to see Thea again last night and set the plan in motion to get the ###### off of Tenex. For the next 12 days he's on 1/2 dose. If nothing happens between now and 12 days from now we'll reduce from there. She made some adjustments in his supplements, too. Send good vibes that the first REAL test of this whole program goes off without a hitch. This is a make-it-or-break-it time. I know it's kind of risky or questionable doing this when he could have a virus or infection but we're going to give it a go anyway. If his body fights off the infection then we can stay the course. If it causes problems then we reset and start again at another time. As always, we're very hopeful here. Thanks for following...! Link to comment Share on other sites More sharing options...
cloudy Posted January 20, 2011 Report Share Posted January 20, 2011 Hi Kevin Well done with your blog - don't give up. My DS sounds a little like yours - we just seem to have nose puffing (like a reverse sniff) and a bit of an eye roll or eye blinking. Some day we don't see much, others are a bit worse. Good idea about the hydration - like your son mine doesn't drink much either. I will give that a go also. Good luck with your efforts. Sal Link to comment Share on other sites More sharing options...
KevinInMA Posted January 24, 2011 Author Report Share Posted January 24, 2011 6 days into half-doses of Tenex and we're looking good.... so far. The cold went away and everything is as it used to be (back when things were good through Dec and most of Nov). I'm still convinced that at this point hydration is KEY. Link to comment Share on other sites More sharing options...
KevinInMA Posted January 26, 2011 Author Report Share Posted January 26, 2011 Progress report (and an email) came home from school this week. Looks like attention and focus are not being affected by this new diet. Still got some issues there. Oh well, I didn't expect this to be a silver bullet. Link to comment Share on other sites More sharing options...
KevinInMA Posted January 30, 2011 Author Report Share Posted January 30, 2011 (edited) We were supposed to go on 1/2 dose for 12 days but instead we went for 14 because we didn't make it back to Thea on the 12th day. 14 days into it and NO problems. Switching to 1/4 dose tonight and going to run with that for a little while. Wish us luck. ETA: Ya know, I just took a moment to reflect on how far we've actually come in the last, what is it, almost 4 months? This is a totally different kid right now. He's accepting of his new diet even though we all know it sucks and makes life complicated. Even with all my optimism when we first started this I really wasn't fully sure we'd get to the day where he's off this medication. Like I've said in the past, if he was in the condition he is in now just one year ago we would never have thought anything of it and pursued it as we had. I really hope it lasts. Edited January 30, 2011 by KevinInMA Link to comment Share on other sites More sharing options...
KevinInMA Posted February 9, 2011 Author Report Share Posted February 9, 2011 Last night was his final dose of Tenex. Even then, that was 1/4 the original dose. Pretty much nothing anyway. To think, a year ago we were trying to treat this with therapists and crap.... What a waste of time. I hope this blog serves other parents well so that they know that there are other, non-medical options. Link to comment Share on other sites More sharing options...
KevinInMA Posted February 14, 2011 Author Report Share Posted February 14, 2011 By the way- these chips are TOTALLY awesome and within the boundaries of his diet. Avocado oil, who'd'a thought?? http://www.amazon.com/Good-Health-Natural-Foods-Avocado/dp/B003ZW7V5M/ref=sr_1_1?ie=UTF8&s=grocery&qid=1297704355&sr=8-1 Link to comment Share on other sites More sharing options...
KevinInMA Posted February 21, 2011 Author Report Share Posted February 21, 2011 I'm starting to wonder if I'm hearing the start of a heavy breathing tic. It's something he's done before. I hope I'm just being hypersensitive..... Link to comment Share on other sites More sharing options...
KevinInMA Posted February 24, 2011 Author Report Share Posted February 24, 2011 If anyone is still reading this (I know there are a couple of you): I've found that the financial toll of this diet isn't for everyone. It's incredibly expensive to raise a growing boy on nearly 100% specialty foods. I have found, however, that I can get pretty much all of the dry goods like pasta, cereal, and snack foods (chips and stuff) for WAY less than I can get them at Whole Foods- the only local option. I just ordered his rice pasta for $3.25 a package vs $4.50 at WF. His cereal is like $6.50 at WF and I get it for less than $4. In both of these instances I buy 6 boxes at a time but with such a limited number of foods available to him to eat he goes through it surprisingly fast. Never thought I'd be buying groceries from Amazon. Link to comment Share on other sites More sharing options...
ameecram Posted February 24, 2011 Report Share Posted February 24, 2011 We buy from Amazon as well, you can really save that way! We feel the toll week after week, but we make it work! Great job!! Link to comment Share on other sites More sharing options...
patty Posted February 24, 2011 Report Share Posted February 24, 2011 Doesn't the shipping & handling cancel out the savings? Try Asian Market rice pasta, made out from water & rice. It is about $1 per pd. & so many varities & it taste WAY better. It is great in soup. Specialty organic food is soo expensive. I am always looking at different ways to cut our grocery bill. Pat Link to comment Share on other sites More sharing options...
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