KevinInMA

Smart people of the internet- I need your advice. Today I went to see a play in Boston. There was a girl sitting behind me, about 12 years old, with her sister and her father. She had what seemed to me to be a pretty pronounced throat clearing tic throughout the whole show. I wanted to approach her dad after the show and tell him what we're doing for our son and that she may be ale to help but I just couldn't come up with a way to say something that didn't seem like it could be taken as offensive. How do I even start something like that? I hate to see people going through this when there may be an answer for them, and in this case, pretty close to home? How would YOU want someone to talk to you about this? Or would you not even want unsolicited advice? I can't figure out how I'd want to hear it, or if I would....

I received a bunch of questions from someone in a private message that I felt it might be helpful to post publicly: 1. Do you allow wheat and/or gluten? Currently- no. It's not part of the diet at all. 2. do you allow any type of dairy Yes. He uses goat butter when we use butter (which is relatively frequently) and cow milk in scrambled eggs and thats it. Dairy is the first thing I want to add back in mostly because I don't think it's a problem. 3. Do you still use unflavored natural calm - and if so, is it 2x/day So here's the thing about that- When we started the diet we were using the raspberry/lemon natural calm so I wanted to use up the rest of it. By the time I used it up, the tics were at a minimum but still there a little (late december). Then we switched to the unflavored and mixed it with Pomegranate juice cuz it's gross alone. We just finished up that bottle about a week and a half ago so I tried to switch back to the raspberry/lemon flavored one and it SEEMED like the tics came back. After a couple days I bought the unflavored one again and within a day or so all was well again. This continues to lead us down the salicylate allergy road since raspberries are high in salicylate and Natural Calm uses natural raspberry flavor. It's also 2x/ day. 4. If you do still use natural calm - does your son have constant diarreah and or mildly upset stomach? I know I did.... This happened once when we were trying to tune in the dosage. Once it did we backed off to 1 teaspoon twice a day and it's never been a problem since. He's 62 lbs. 5. do you find that salicylites are a big no-no - or can some foods work? This is what we're thinking is the problem so we don't do any foods in the VERY high salicylate category and very infrequent foods from the high category as seem here: www.salicylatesensitivity.com 6. did you find an issue with tomatoes and other night-shades? It's not so much that we found an issue with them, it's that his diet limits nightshades to NONE. They may not be a problem at all but we won't know until we try to add them in. HOWEVER, many nightshades including tomato is high in salicylate. 7. what about Soy No soy in his diet. 8. do you still only buy organic meats? I've determined that if I were to buy only organic meats I would be bankrupt. Whole Foods meats are HORRIBLY expensive. We have a local butcher we go to that we trust. It's better than grocery story beef but not quite Whole Foods. 9. does your son eat sugar - such as organic cane sugar. I add that to decaf coffee - along with half-and-half - but have been questioning that move. He's not supposed to but he does. Processed sugar and cane sugar are very low in salicylate, as is maple syrup. The kid eats way too much maple syrup. It's the only thing we're bendy on because it hasn't affected him at all and it's a low salicylate food. He eats VERY LITTLE sugar, but when he does its in the form of a singe medium-sized gluten free cookie from whole foods. Maple syrup is for pancakes. 10. I know you posted a list of your sons vitamins/supplements before - is that still your general formula? I read it, and wasn't familiar with a number of the items, but probably because I just use the Bontech program that many on this site are using. Yup, she makes tiny changes here and there but what he's taking is still pretty much that. Some things are digestion aids like enzymes and probiotics, others are just straight vitamins. She changes it up a little bit every time we go but so far nothing major.

One thing we've never really associated with tics is the fact that he scratches the base of his nose very very frequently. He says it's itchy and it's never really been a major issue but he still does it a LOT. He used to do it to the point where it bled a couple times. It's not doing that anymore. I've started putting Gold Bond on it to see if the anti-itch properties make any difference. Can't seem to tell yet. I hope it's not related... I REALLY hope it's not. On the plus side, within a day or so of ditching the flavored Natural Calm the cough was gone, so THATS something.

Thats comforting, Megan. The increase is not substantial AT ALL but, as I've said a million times, we're hypersensitive. UNFORTUNATELY, I just ordered a 16oz container of the raspberry lemon for $18 on Amazon. I usually pay $25 for the 8oz everywhere else. I guess thats going back or something.....

I just remembered, a week or so ago I went back to giving him raspberry-lemon flavored Natural Calm after a couple months on unflavored. Raspberry is a VERY high salicylate offender! CONNECTION!? Probably. Bye bye, flavored Natural Calm.

Curious, coughing has picked up a BIT. Might just be hypersensitivity. Might be nothing at all. We've been using a little cow butter since Whole Foods was out of goat butter when we were there last. Also started using commercial (Cains) mayonnaise a few weeks ago. Might be time to back up a bit.....

Outback is great! We love it there! Thanks for the recommendation. Ya know, as I continue to come to various realizations about this diet and what it's done for us, there's one thing I've completely overlooked until now- Brandon has had absolutely no trouble sleeping since right about the beginning of the year, right about when the tics were considered officially gone. No trouble at all. There are a few really nice side effects of this elimination diet. That is a BIG one.

Another visit to Thea, our nutritionist. Hoping we would be able to start reintroducing some foods but she strongly recommended against it for a little longer. She was very convincing as to why so we're going to stay the course for a couple more months. Surprisingly, Brandon was not particularly annoyed by this; which is nice. So a few adjustments to his supps and we're back at it for 6 more weeks. She did mention that we could TRY switching to regular gluten free bread. We may just do that when we dine out and stick with the millet at home. Can anyone give me an idea of what restaurants do when faced with gluten free customers? Like, do you ask for a gluten free bun for a burger or gluten free chicken fingers instead of the regular breading or stuff like that?

We have Prime. Would probably still have Prime if we didn't buy his food there. Amazon is my primary source for virtually all goods. If we didn't we'd probably still be able to get by with the free shipping over $25 thing that they do.

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.

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.....

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

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.

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.

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.

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.

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...!

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.

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.

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.

I just take a couple slices of Sami's Millet bread (any millet bread will work) and dry it out in the oven for 15 mins or so. Then grind it up in a grinder with some salt, pepper, and italian seasoning. Thats it! It's good baked or fried. what I've been doing lately to avoid frying then is, once they're coated I stick them in the oven for about 10 mins on a rack. Then I spray when down with some olive oil to sorta fry the breadcrumbs. Browns them up nicely and keeps them sticking together. Honestly, if we gave up this diet tomorrow, I'd keep buying millet bread if only for making breadcrumbs. SOOOO much tastier and crunchier than regular bread.

And just like every other time- 6 days later and he's fine. Must have been the chinese food. Anybody want to take a guess as to whats in that stuff??

Okay, we've broken through the wall and made it past the holidays. Now we can get back into a routing. For the first time in well over a month I saw him eye-roll today. I almost died seeing that. I'm hoping it's just all the excitement of the holidays. He had some chinese food last night, too. We probably shouldn't have done that. Maybe it's that... Lets see how long it lasts.

I'm convinced the kid got no more than 4 hours of sleep last night. This is the most excited and wired he's ever been on Christmas eve. As a result he began eye rolling again. It was VERY slight but I noticed it. I'm thinking it's cuz he's totally exhausted. Maybe we'll know better tomorrow.

We'll be delving into gluten tonight, though just a small amount. My mother-in-law makes meat pie's at Christmas. The filling is totally fine. The crust is mostly flour. He'll try some crust. It's very thin so it's not like he'll be putting down a ton of it. Just another thing that's worth a try to see what happens. Have a great Christmas, everybody! Hopefully I won't have to update until early next week.