KevinInMA

Today, after a couple of weeks of trying and failing, I finally got a urine sample in the mail (it wasn't uncomplicated--at least not for me...). This test is to check out his methylation pathway. An easing up of the tics when sulfates are introduced through the epsom baths makes me think that something isn't going right in the methylation pathway (perhaps that sulfites aren't getting converted into sulfates like they should be... we'll soon see). Chris I don't understand a word of that.

For what it's worth... I rank epsom salt baths right up there with the magnesium. Most every day. If not, I definitely won't skip two days. - Chris Really.... Is it instant gratification? How much epsom do you use?

Oh. I haven't tried Epsom baths after gym. There's just no time. He gets to sleep so late as it is. I may give it a shot after a Friday practice to see how it goes though. He hates baths. Finds them boring.

I don't think anything unusual happened at gym. Hed have told me. He also has no time to eat anyhing while he's there so I'm not too concerned about that. The thing I've always wondered about was the chalk. It's EVERYWHERE. It consists of Magnesium Carbonate so I'm not sure what affect that has. I've always wondered. This morning he woke up with minimal coughing but eye rolling more than I'm comfortable with. It's possible were just in a transition period. Breakfast was a fried egg, uncured bacon, and millet toast w goat butter. Lunch is turkey Sandwitch like yesterday. He just didnt want the soup. He's trying out for the drama club after school. Hope he remembers to go to it and isn't waiting in the pickup line for me where I won't be!

Two steps forward. One step back. Today started out great. After school. More of the same. Homework went very well. Very quiet. Good progress. Dinner was chicken soup. Then gymnastics practice for 3 hours. At pickup he was coughing. Pretty much his usual level. I'm really hoping it was just because he was tired (it gets worse when he's tired) or thirsty. We've always thought that even minimal dehydration caused him to tic more. The more he drinks water the better it seems to get. He's eating second dinner (he eats before and after gym) of rice cereal and banana nut toast right now and is relatively quiet but I expect him to pick it up again when it's time for bed. He's eye-rolling like crazy.... Also, for the past couple months he's occasionally had a tough time getting to sleep. A couple weeks ago he woke us up at 5:30am almost in tears saying "I DIDN"T SLEEP ALL NIGHT! ALL NIGHT!" which we know isn't entirely true because we checked in on him before we went to bed and he was asleep. I want this to stop happening. I don't like the stress it causes him to take a long time to get to sleep. It's very saddening. Hoping tomorrow brings more normalcy.

Trish, We use full strength Natural Calm with Calcium. The dosing is different between the different products so you need to be careful when you compare my dose to yours. We end up giving him about 230mg of Mg per day. Kids Calm is probably a much lower concentration so be sure to check your label. When it comes to sweeteners we've somehow managed to eliminate EVERYTHING from pure cane sugar to stevia to nutrasweet to maple syrup. Bottom line, if it's not built into a piece of fruit or something it's not going in him for a while. Even then we need to take it easy on heavy sugar items like bananas. When we were in Thea's office (His nutritionist) his biggest complain that caused him to cry was halloween. It's just not going to be fun. It's going to really really not be fun. We may end up taking him out of school and doing something fun on the day they have their party and for halloween night we may go out and buy him a new Wii game or something. SOMETHING to get his mind off of candy. Society doesn't make a diet like this easy... I plan on trying out sweet potato fries and other sweet potato recipes. I just haven't had the chance. We've got plenty of time since we're in this for the long haul! Next stop is chicken soup. Maybe tonight. I DID find a recipe for mayo. http://www.justhungry.com/2006/02/basics_mayonnai.html I just had it on a sandwich. It's not AS flavorful as the mayo I'm used to but it's a good alternative. He's supposed to be eating it as I type this so we'll see what he says when he gets home. Pumpkin seeds are fine. Here is a list of foods high in salicylates: Almonds Apples (and their respective drinks) Apricots BERRIES (every kind) Cherries Cloves Coffee Cucumbers & Pickles Currants Grapes/Raisins Wine Nectarines Oranges Peaches Peppers (bell & Chili) Plums Prunes Tangerines Tea Tomato Oil of Wintergreen Aspirin and any med containing aspirin Watermelon

This morning he woke up as he always does- reluctantly. He came downstairs and started in on his morning routine. The whole time I was listening intently to hear.... nothing. It took him almost a full half hour before he let out the first cough. That is a new record. Usually they start pretty immediately as soon as he wakes up. The whole time he was getting ready for school he was doing it all on his own. I didn't have to remind him of anything today. When I told him to brush he teeth he had already done it. When I told him it was time to leave he was all ready to go. He coughed a total of 5 times in the first hour of the day. Thats practically none. Breakfast today was a mix of rice milk and coconut milk in Erewhon Crispy Brown RIce cereal. It's exactly like Rice Krispies but not QUITE as sweet. I mean, rice krispies aren't that sweet anyway. I'm mixing the milks cuz coconut milk is just a tad too thick and rice milk is just way too watery. They seem to mix nicely for cereal. Lunch is turkey from the local turkey farm on Sami's millet (which he LOVES), homemade mayo, and organic lettuce. Popcorn and Mango are snacks. The kid LOVES mango. My whole house smells of mango. Everywhere I go I smell mango. I think it's lodged itself in my sinuses. But who am I to stop him from eating mango?? My optimism is growing.

1. Well, the only connection I can make with family history is myself. I'm fairly convinced that what I have going on is a tic. It's a cough similar to his that has been treated as reflux but I'm not fully convinced that it is. Here's the deal with me. I tried this diet a few years ago with this nutritionist but I just couldn't handle it myself. Yes, my kid is stronger than I am. I admit it. The difference that I can see is that I have free will and he does not. If I want an Oreo I can just go get one where he has to ask. If you're thinking about going through this process do it while they're young and can't make food decisions on their own. I told him several times that he can whine, complain, and cry about this. I won't get annoyed and I'll listen to all of his complaints, but he STILL has to do it and thats that. Free will.... it can be detrimental sometimes! 2. Yeah, he's still taking it. It does something for him but I don't think it does anywhere near what the Natural Calm does. We'll taper off the Tenex first but I think it's going to be a while. We tried it once over the summer and the results weren't that great. 3. He is 60lbs. I give him Natural Calm plus Calcium at 1tsp/ 2x a day. Hope this helps!

Okay, rounding out our day: The day started off horribly and scary. I had thought that there was no way we were going to make it through this if he kept getting worse. I picked him up at school and he was good. Normal (for a kid with tourettes). I gave him his 2nd dose of Natural Calm when we got home. Then, by about 5pm, I started to notice that I hadn't noticed him tic'ing. Then I started paying attention. CLOSE attention. EVERYTHING was at an all time minimum. He was not coughing. He was not rolling his eyes. He was not fluttering his fingers. He was not stutter-breathing. I stared at him in the rear view mirror for about 10 minutes while driving (not quite as unsafe as texting but whatever). Maybe 1 eyeroll instance. I stared at him for 15 minutes while folding laundry about an hour later. NOTHING. This is a first. He never goes longer than seconds to a couple minutes between SOME kind of tic. And now we begin my personal journey through cautious optimism.

Curious, Chris. What makes you an "Advanced Member?"

While I'm asking for help, anybody have a recipe for delicious mayonnaise? No canola, no vinegar. If we can use olive oil (I hear it makes the mayo much "oilier") or sunflower oil then we'll be good.

After reading a lot on this forum, I decided to contact a nutritionist that has been an acquaintance for several years that I KNOW would be just the person to manage any dietary "cure" that may be available. Her methods are extreme but she assured me that she hasn't had one child with tourettes not be fully cured through this program- IF they can stick with it. I have no reason not to believe her. She's been at this for many many years and even the people at the health food store have told me that if anyone is going to cure this, it's her. So we begin (last week)- She has decided that there are two issues at play here. One is candida (an overabundance of yeast in the body) and the other is the effect of salicylate on the brain. Along with some enzyme supplements she has placed him on a severely restricted diet. Something that your average 9 year old would spend hours crying over (he hasn't YET but halloween isn't here yet, either). Here are his limitations (an overview-without trying to write out everything in great detail): No wheat No Oats No cow dairy No sweeteners of any kind (this is temporary and will loosen a little after the first month or so) No apples, berries, pineapple, almonds, peanut, several other fruits, tomatoes, cukes, a couple other veggies. No nightshade veggies. The list is WAY longer but those are the main points. Drinks: Unless he grows accustomed to unflavored coconut milk or rice milk, his only option right now is water. Suck it up, kid. It's going to be a long haul. We have a list of preferred items that he can have and I've been cooking based on that list for a week now. We're trying to keep things as FAMILIAR as possible to keep him as happy as we can. For breakfast The first day I made scrambled eggs for him. I figured I could just swap out dairy with rice milk. Sure. Why not? Well, WHOOPSIE! I bought VANILLA rice milk! Made for some sweet smelling scrambled eggs but he ate them! So day 1 (and 2 and 3) was scrambled egg (rice milk once, no extra liquid once, and unsweetened coconut milk with the third), millet toast (Sami's is SO much better than Deland) with goat butter, and uncured bacon. She recommended Frewhon brown rice cereal. He likes it. It's a lot like unsweetened rice krispies. We started out with rice milk but it's not very flavorful and looks like white tinted water so we quickly switched to coconut milk which is thick and has a nice flavor. A lot more FAMILIAR. For snacks: He's really digging mango. He likes cashews (pick the most expensive nut you could, kid) and pistachios, and we've been air-popping popcorn and adding some salt and goat butter. The kids at school keep asking him why he doesn't bring in cookies and other crap for snack. I've told him to tell them that as a competitive gymnast he NEEDS to eat healthy to be able to develop muscles and win. He told me he doesn't want to lie to them but I keep assuring him that on this diet it's TOTALLY true! For lunch: Okay, for the record, SCHOOL LUNCH TIME is going to SUCK!!! I absolutely NEED ideas for school lunch. SOmething that will last 5 hours between the time I make it and the time he eats it. PLEASE HELP! Today was the first school lunch. Over the weekend I made him chicken fingers- some with brown rice flour and some with millet breadcrumbs I made from the Deland bread that he doesn't like as bread. They were FANTASTIC. YOu'd never in a million years know the difference. I cooked them in a little sunflower oil and they're just delicious. I froze a bunch of them and today took some out for school lunch. Sent popcorn that was popped last night and some mango. For DInner: Dinner is EASY so far. He can have just about any meat so we've been doing a lot of chicken with steamed veggies and either brown rice or a small amount of white potato. I need to get him into sweet potato. Last night I made a meatloaf and carrots. This past Saturday, his nutritionist reluctantly decided that she wanted to take him off of Natural Calm in favor of another Mg supplement because of the stevia content. SInce Saturday his symptoms have gotten SO MUCH WORSE. His strange breathing thing that hasn't been around in a year was coming back. He woke up this morning a little scared that his throat hurt from breathing like that. I decided to nix the new Mg for the day and try Natural Calm again. 15 minutes later he was FINE. I dropped him off at school and sent an email to his teacher telling her everything that is going on. She said that he was totally fine at school as of 10:30 this morning. I'm tellin' ya. There's something to that Natural Calm!! So thats where we are now. I'm going to keep updating this thread as we go- partly because this all needs to be documented but also because I need support. I need ideas. For example: I've been hunting for a chicken stock/broth that doesn't have anything in it but broth. Even at the health food store it was hard to find so I went to pick up some fresh sliced turkey for his school lunches at the local turkey farm and the girl (who I kinda know) told me that she could give me some of their turkey stock! PERFECT! Now I just need to get the kid to like soup!! Thanks for listening, everybody. I HOPE TO GOD this works!

Since there's no point in keeping what we're going through to ourselves I'm going to use this thread to live-blog everything that we're going through. A little background (even though it's in other threads): My 9 year old son was first told that it was possible he had a tic just over a year ago in Sept '09. His tic- stuttered breathing. It was concerning since he really noticed it a lot. Along with that he had a chronic cough that wasn't too bad and started a few months before the breathing. His primary told us to wait a while and the breathing would likely go away. Thankfully it did, sometime in Oct. Through this we've still found ourself wondering why he was coughing. We explored reflux to no avail. We even had his adenoids out thinking it might be the cause. No effect. In Feb '10 we visited a neurologist which was the biggest mistake of the whole process (the dr we chose, not seeing a neuro. THe details are in another thread). Long story short, he started on Tenex 1mg/day in March and around the same time I discovered this forum, THANK GOD. When he started Tenex he was pretty bad. Coughing was every few seconds. He even had a hard time sleeping. I took the one simple recommendation that I could from this forum- Natural Calm. IMMEDIATELY we noticed a difference. a BIG one. In the months following several other tics have come and gone and we kept skeptically giving him the Natural Calm. In those months we kept a close eye on how he was affected by a dose (which he got 2x/day). By June there was no doubt about it. Natural Calm was doing SOMETHING major to him and it was all good. Over the summer a few changes occurred. The eye roll tic showed up but has lessened since. The cough (his longest running tic) has lessened. The day before school started he was tic'ing like crazy. The anxiety of school was getting to him. When I picked him up after the 1st day he was TOTALLY fine. He was so happy to find that he had a great class with no punks to hassle anyone and a fantastic, calming teacher. Since the beginning of the school year his tics have been minimal and his spirits have been high and he's been doing great in school. (to be continued)

Well, the latest is that we've stalled at 1/2 dose. Tried going down to 1/4 and it got much worse. Still, I'm perfectly happy being on half the dose he was at a week ago. We just may not be ready to get rid of it entirely yet. We'll get there.

It's kind of early yet to really make a call on the Focus Attention. Plus, right now we're Focusing all of our Attention on coming off the Tenex and seeing how it reacts. I'll definitely let you know when and if we've start seeing any affects. Did I just refer to my son as "it?"

It's kind of early yet to really make a call on the Focus Attention. Plus, right now we're Focusing all of our Attention on coming off the Tenex and seeing how it reacts. I'll definitely let you know when and if we've start seeing any affects.

Well, I haven't been sharing a ton since I started a few months ago but I thought you guys would be interested in hearing the latest on my son's treatments. Last time I posted (a few weeks ago) we had become totally convinced that the Natural Calm was what was managing his tics. As we continue this route we've decided to wean him off of Tenex (with the doctors approval). We are on day 3 (of 6) of the weaning. He's at half dose right now. Starting 1/4 dose tonight and so far no negative affects. Our hopes are high but our expectations remain limited. Last time he came off a med (Clonidine in Feb) his tics returned within hours and with a vengeance. The reason we decided to wean him now is because last week we gave him his nightly dose and a glass of water and the next morning my 2-year old came into the kitchen and gave it to me. She found it in the living room. He forgot to take it! If she had popped it in her mouth instead of bringing it to me we'd be in the hospital. On top of almost killing our daughter, his not taking it at all that day had absolutely NO affect on his tics. I didn't tell him he didn't take it. I wanted to see how he handled the day thinking everything was normal and it totally was. So happily, after 4 months of being medicated, we will be almost entirely under the care of the good folks who make Natural Calm. He still tics a little. Nothing major. Entirely live-able. I may try making some other changes/additions as we go along, just to see what happens. I'm just happy we'll be off of drugs. Oh, we've also started him on Focus Attention. Going to give that a couple weeks more to see how it works. So far it's hard to tell. Thanks for all your advice, everyone!

I recently asked this question to the manufacturer and got this response: "The RDA for children his age is 200 milligrams of magnesium (about one tsp.) per day, but, in Dr. Carolyn Dean’s (M.D. N.D.) book (The Magnesium Miracle) she says that a person can take up to 6 milligrams per pound of body weight as a therapeutic dose (i.e. 50 lb child x 6 mg per pound would be about 1 ½ tsp)" I have been giving my son NC for about 2 months now and the results are miraculous. If you go back and read my posting "Overwhelmed..." you'll see what we went through back in March. Since adding NC, the tics have nearly gone away. They change frequently (Probably 4 times in the past month) but are still very mild. I've been trying to determine whether or not NC is actually having an affect or if its any other factors so here's what I did: I've been giving him 3/4 tsp at night and 1/2 in the morning (it didn't make him tired). What I've noticed was that when he woke up he would tic quite a bit (still not horrible). I would give him the NC and by the time he goes to school he's almost totally fine. His teacher told me that he has been nearly tic free all morning and by 2:00pm it starts up a little (but still not bad at all). By the time he gets his evening dose he's ticing a little more but it's all still mild. today I decided to give him 1/2 tsp at breakfast, again at lunch and back off his nighttime dose from 3/4 tsp to 1/2 (I may ditch it all-together. Still not sure). He came home from school virtually tic free. I'm totally convinced now that magnesium is what is fixing this and I'm very optimistic that this can be a long-term solution. The manufacturer recommended that I switch from 3 discrete doses to 1 or 2 long doses like putting a teaspoon in the water he takes to school and let him graze on it all day. I'm willing to give it a shot. Last night was his first loose stool. Hopefully switching to a slow-release dose will help.

I keep forgetting to do that. Got to pick up more Epsom. By the way- for anyone that thinks their kids are going to struggle through their childhood because of tics: the kid who won this huge meet (who is always in the top 5 at every meet) has a head twitch motor tic. I've been meaning to approach his parents about it but I could never figure out who they were. The kid is an amazing gymnast.

Well, he did okay yesterday at the meet. He tics in between events but even then not heavily. Never had a problem while competing. He was so stressed over this meet. It's a big one. He slept great the night before in the hotel room but at the meet his coach texted me to ask if everything was all right cuz he seemed REALLY tired. I think it was just the stress of it all. He pulled out a solid performance though. Better than we had expected given the month he had. He just got home from school and was coughing a bit. Not bad though but no where near as seldom as he did over the weekend. Tics are a strange thing but for now the sky is not falling. I have a positive outlook. It helps to have a support community like this.

Okay, as I sit here in a hotel room watching my son playing with his friends, I now can guarantee that these new movements are a tic. The coughing is virtually gone and replaced by a combination of first pressing his chin to the top of his chest with his arms partially out to his side followed by a partial bow. He claims it's all a stretch but it happens pretty constantly and he completes it all with 1-2 seconds. That combined with the fact that he does it more as he gets closer to the timing of his dose is gets much worse. Still, I'd prefer this progression to the loud cough.

Thanks Caryn. When the results come back I'll talk these things over with the Dr's. Until then we have his gymnastics regionals this weekend. Through all of this he's been looking very rough in the gym. Several steps back in some instances. Hoping he pulls it out this weekend so he has something to be extra proud of.

Thanks everybody. I'm taking him after school today for some blood work. Maybe we'll have some answers after that comes back.

Bonnie, I'd like to get those tests done. Do you know what they were called so I know what to ask for?

Dammit.... I jinxed it.....