KevinInMA

Another very good day. Minimal everything except sniffling and I'm still not convinced it's not environmental. Breakfast was cereal today. In case I never mentioned this, if I'm not giving him goats milk with his cereal (which I'm not anymore) I mix coconut milk (thick) with rice milk (thin) and he never even notices. Lunch was turkey on millet. Snacks were carrots, Terra Taro sticks, and right now he's eating coconut flakes. Just coconut flakes. Dinner was meatloaf again but this time I included millet breadcrumbs. Asparagus and brown rice were sides. The meatloaf was fantastic. Thea made him some pear jam. More like pear butter. Very runny and she said it doesn't taste like much. I just picked it up. Wonder what it tastes like. We'll see!!

Cheri, THANK YOU! This is going to be awesome as soon as he can have any sweetener at all. I mean, I'm not loading him up on chocolate and pops but when he's in that social setting it would really help. I'm bookmarking that site.

Another day of improvements again. Still don't know whether it's a) the normal course of things the lack of goats milk or c) the Flonaise. Nice quiet night. Some sniffling. Still not fully committed to that being a tic. Sometimes he's producing something, or at least sounding like he is when he sniffles. On another note- just as expected, H E L L week has begun. The week where everyone else gets to have candy except my kid. Tonight the coach was giving out candy at the end of gym practice and he couldn't have any. The other kids were asking him why and he interprets that as they were teasing him. A similar thing happened at school today. So we're pulling out the big guns early. Originally we planned on surprising him on Sunday by letting him pick out whatever he wanted at Toys R Us for $50 but we decided to tell him about that tonight. We also armed him with a good response to any taunting he might get. "I'm doing it for my health but I'm also trading candy this year for $50 in toys! Top that!" Hope that works, at least for this week. He's handling this all so well considering how hard it is.

Thanksgiving came early today. Dinner was a fresh local turkey with broccoli for Brandon. He decided he didn't like butternut squash. He was dying to eat cranberry sauce but alas... nope. Still he was quite contend gnawing on his turkey leg. The day started off with a very concerning cough and ended with very very little. Hopefully this is the beginning of the....re-ending. Wondering about that goat milk theory of mine! Eye roll is still gone. Finger thing is minimal. Even the sniffle is not as bad as it was. Right now, we're just dealing with the cough.

Megan, I found he likes it when I mix coconut milk and rice milk with his cereal. The coconut milk is too thick and the rice milk is too thin but together they're juuuust right. He doesn't even notice the difference between that and the goats milk.

Thanks, Chris, for the encouragement. The waiting is the worst part, as I'm sure you're well aware. I wish I KNEW this was going to be the solution. It would make it easier to muddle through.

It's a mom thing, RIck. Well, the past couple days my daughter (or dd3, if I MUST ) has developed a croup-like cough and a fever. Brought her to the Dr and she didn't see anything. Other people have told me that they've had this recently so I'm not too concerned. Seems like a virus. Well, Brandon woke up doing it too this morning and complaining that his throat hurt. He's not coughing more than normal but it seems to be back to his tic cough. Still, I'm not ready to discount the fact that the past few days of coughing have been this virus. Gotta let it run itself out and see. On another note, I decided to nix the goat milk for a little while to see if that may have played a role in the cough coming back. He's on coconut/rice milk for a while, just to see what happens. The reason I did this is because the cough didn't really become a problem again until I bought the goats milk. Maybe it's connected. Maybe not. Let's just see what happens here.

Well, He has no OCD tendencies and the Dr's that we've spoken to have discounted PANDAS mostly because of that. He was also on a very high dose of antibiotics over the summer twice because he contracted MRSA. What does all that add up to? (I'm not being snarky but actually asking because I don't know) Also, Seriously? Full moon? You guys have tracked this???

Well that was short lived. Everything is back to "normal." Sniffling, coughing, pretty much everything. eems like a lot to attribute to just one dose of Benadryl but what the ###### do I know. How frustrating.... How very very frustrating. The turkey soup came out good. He hates it. Hopefully things will improve over the weekend...Who knows... Frustrated. I'm sure you all know the feeling.

Interesting, Megan. The honey/sucrose is currently on the do-not-consume list but we may give this a try in a couple weeks if we can add it back in then. How's the taste?

Thanks Cheri. Yeah, the issue I have with the Benadryl is all the other crap in it, including sucrose. The list of "other ingredients" is just way too extensive. We won't be using that again anytime soon. Oh. Last night we had tacos. He had the shell, who's ingredients were all allowed, the lettuce, onion, and beef. He was so happy to have something with a bunch of flavor. My wife and I don't like taco's all that much but we did it for him. Tonight.... Well, Friday's are tough cuz he eats alone before gym at 4:30 so I need to get something. Maybe I'll make another soup. I should check with the local turkey farm to see what is in theirs. That could be very convenient. I also started him back on Flonaise yesterday. This sniffle SEEMS tic-like but I'm still not convinced given the time of year. He's also complained that one of his ears seems clogged. Maybe I should just take him in to the Dr just to make sure it's nothing like an ear infection. He doesn't usually complain when he gets them (even though it's been a while) so he might not even know it. That sure would explain a lot. Just thinking out loud here....

Oh. About Megans post, Maple syrup, honey, and I think molasses are the first sweeteners she's allowing him to reintegrate in a couple weeks so you may want to switch to those instead. He'll be off of cane juice for a while, I think. Don't worry, Megan. Everyone should feel free to share ideas here! God knows we all need them!

I forgot to post last night. Looks like the cough came back for a little while yesterday. It just so happens to coincide with the boneheaded move that I made to give him liquid Benadryl the night before. Haven't given him that in a while. Wonder if it's related????? _____________ Hey Rick, It's looking like this is far more of a long term detox than an overnight fix. If it was, then every doctor out there would be pushing it as an alternative. I'm pretty aware of that but as I write night after night I keep hoping for it to just kick in and all stop happening. That doesn't mean it's gong to happen though. My guess for you is that, as an adult, you have much longer road ahead of you to detoxing since it's been building up in your system for so long and the fact that you're just much larger than a 9 year old. The fact that you've gone this long is awesome. Changing diet as an adult is horribly difficult and if you can muster up the willpower to keep it going then more power to you! As adults we get set in our ways. Kids are still moldable. I hope you start to notice a difference, ANY difference, soon. If not then you can at least say that you're eating healthier as a result. Hope this helps!

Side note- a friends 13 year old daughter succumbed to brain cancer last night after a 6 year fight. I bring this up for two reasons. 1) the following post reminds me slightly of what happened when she first began treatment for her tumor. and 2) Hug your kids often. It could be SO much worse than what we're dealing with. For the last three nights I'd sit down to write a post and start with "Okay, I'm calling it. This cough tic is now dead" but I'm still afraid to make that claim. Even though we're treading new ground with this treatment, we won't know for a LONG time if this is really the cause should the tic going away. We also won't know whether or not it'll come back at any moment. With that in mind, I will say, he hasn't coughed once since early this morning when he coughed... once. Now, with the cough on the way out and the eye rolling to a minimum, the finger fluttering is still around. It's not excessive and it's the least disruptive of all his tics. The newest problem is the sniffling. It's very studdery. It's far more often. It's very very annoying. He says there's nothing in there when he blows his nose and there really doesn't sound like there's anything in there. This doesn't SEEM like a cold or allergies. It has all the makings of a tic. The frustration continues, its just switched sources. None of today's meals were anything out of the ordinary. Don't forget to hug your kids.

Day 10: The cough is severely diminished- nearly gone. All other tics are still going strong except the eye roll which still seems to be more of a blink. The breathing thing that was starting to become a problem a couple weeks ago is still happening but not as bad as it could be. He sniffles all the time now but I'm not sure if thats just allergies. It IS that season. So many variables. This is complicated.

Well.... End of the night. 3 hours of gymnastics and we're left with...silence. Very pleased. Still, LOTS of blinking and some eye rolling. Hoping this isn't just waxing and waning disguised as progress. Second dinner was an egg sandwich and cashew butter on banana nut toast.

Well, sometimes no news is good news. This is one of those times. Things continue a slow progression. Once interesting note. We're working on homework a few minutes ago and he says- out of the blue- "Dad! My cough is gone!" to which I replied, "Yeah, it's been pretty much gone for a few days. This is working, isn't it?" This morning before school he coughed a LITTLE. After school, so far nothing. I expect to see it back after gymnastics tonight. While he was playing with his friends yesterday he was coughing quite a bit but nothing concerning. Almost as soon as he was done playing it went away. I'm hoping the same happens tonight after gym. We'll see! Today I'm seeing a small amount of eye rolling and the finger movements are back but so far only during homework. Hope it subsides. I need ideas for breakfast, too. So far it's either his rice cereal, which he likes (he also likes the goats milk!), or some kind of egg sandwich. He prefers his eggs in sandwich form, which is fine. Dinner today is roast chicken, green beans, and brown rice... All leftovers.

VERY good morning. Minimal everything. This is getting interesting. Breakfast was scrambled egg sandwich w/ bacon. Then a banana. Lunch will be roast beef with brown rice and green beans. He's got friends over now and they're running around like crazies. We'll see how the activity affects the cough. I also bought some goats milk. I wonder if he'll notice. I don't think I'll tell him what it is before I try to get him to drink it. Also hoping to make a goat yogurt smoothie. Anybody have any thoughts on what fruits to put in it? I have a WIDE variety of fruits now.

Thanks Cheri, I wasn't aware of the fact that epsom was a different form of Mg than what he's been taking internally. I need to do some reading up on the benefits of sulfates.

Well, after the bath this morning the rest of the day was smoooooth sailing. Even now as he (and this is where it starts because I'm talking about it) eats his final snack before bed he's not making a sound. A LITTLE eye rolling but for the most part the huge majority of his eye rolls have been replaced by a simple blink. I can tell where he'd normal roll his eyes and it's not mostly just a slightly more pronounced blink. Breakfast was fried egg, millet toast and bacon. Snacks were: banana, sweet potato chips (not much), carrots, popcorn, some cashews, some sunflower seeds and finally millet with cashew butter. We had a CRAZY busy fun day. Museum of Science in the morning, Ringling Brothers Circus in the afternoon, and then he spend the evening at my moms so my wife and I could have a nice evening out. We had the challenge of finding things to eat while we were out all day. Lunch at the museum was a hamburger with lettuce and onion. No bread, no condiments. Dinner was the millet chicken fingers again. He loves those things and they're just baked chicken. I can't find a reason to not give them to him when he wants them. I made several extra and froze a bunch. My mom gave them to him tonight. All in all, the day started out concerning (and also kinda stressful for him) and quickly changed to a COMPLETE pleasure. It ended exactly like every night should end- quietly. 'Nite all.

Ya know, now that I think about it, the cough does tend to worsen with exertion. Over the summer I remember noticing that he coughed a lot when he was playing in the pool but it went away shortly after he relaxed. I should bring that up with Thea. See what she thinks. By the way, as soon as he got in the bath he stopped coughing and hasn't started since.

Good points, Cheri. You're right. We need to add more variety to his fruits and veggies. Should start on that today. I need to grab the "approved veggies" list and go shopping. He's in an epsom bath right now. Haven't heard a peep from him. The other thing that happened this morning was he was reprimanded a few times (for various things) almost as soon as he woke up. Since tics are exacerbated with anxiety this may be the cause of the problem this morning. Still not going to discount a problem with chalk at the gym, though. Something to investigate, I think.

Thu-Fri = two steps forward. Today started out with several steps back. He's coughing a lot... More than I'm comfortable with. Great.

Thanks Chris. I've got some light bedtime reading to do, I guess. Well, today was interesting. I'm having a hard time balancing my desire to see him through this with my feeling bad for my kid. Breakfast was cereal, if I remember right. Same cereal as he usually has. Lunch was soup. Yup, I got him to voluntarily eat soup at school. Dinner was baked millet/chicken fingers. Even better than fried. I can't wait to make those again. Various snacks- Cashew butter on banana nut millet toast, Popcorn w/ goat butter, Mango All day long he was quiet and I've noticed when looking at him that during many of the times when I'd expect to see an eye-roll (Yup, I know what it looks like when it's "supposed" to happen). he didn't roll but he blinked a couple times. I see that as an improvement. Almost no coughing at all when I was with him. Then 4 hours of gymnastics practice. Still waiting to hear how his focus was tonight. When he got home (about 8:45pm) he said "Someone was eating something with syrup and it smelled SOOO good! I NEED something sweet!!!" He was so distraught. Started to cry a little. He went over to where the candy is kept and said "I just want to look at what I wish I could eat" (I need to throw that stuff out, I know) and he was standing there just all upset. Then my seldom seen empathetic dad side kicked in and said "Do you want to just chew on a tootsie roll to get the taste on your tongue then spit it out?" He immediately said "No. I can't do that. I can't cheat but I need something!" I said "Lets have a bowl of cereal and watch a movie. Once you get something in you, you'll forget about it." He hasn't said a word since. Oh! That reminds me! I bought unflavored (no stevia) Natural Calm. Gave it to him this morning in water and he literally gagged it down. It tastes like unflavored Alka-Seltzer. YUCK. So this afternoon for his second dose I gave it to him in a little pear juice (the first juice that he will eventually be allowed). It was so little, like a shot size. He said "What is this?" and I told him it was a little juice. He replies "No. NO NO NO. I'm NOT cheating!" and he pushed it away as far as he could. This kid is SO committed. I admire him. I really do. I wish I had the strength of my own kid. Anyway, He's home from gym. Coughing a little. Not as bad as Wednesday night. 4 hours of straight gymnastics will wipe a kid out and when he's wiped out the tics get worse so I can't complain right now. I still think it's working...

Chris- How much epsom do you add to the bathwater? Well, we had friends over for dinner tonight so I made a chicken. I love my Advantium. Makes cooking a whole chicken a PIECE OF CAKE (which my son is no longer allowed to have, by the way). I coated the chicken with goat butter and we had corn with it and since he doesn't like mashed potatoes he had a baked potato while everyone else had mashed. All of that is perfectly within his diet. Dinner is easy. I think we're starting to see the cough as the first victim of this diet. It seems, even through last nights annoying recurrence, that the cough is really easing up while some other tics remain. That, to me, is very promising. He's chomping on some mango before bed. That, to me, means one thing. I'll be smelling mango everywhere I go for the next 24 hours. It's all worth it, though. Nite, everyone.