KevinInMA

Well, whatever made him sick now appears to be gone. He blew past that pretty painlessly so a few days ago I decided to try an experiment and add a little milk to his cereal along with his rice milk- about 1/3 cup of lowfat organic cow milk. He didn't notice but what did happen was about a half hour later he started to get nauseous. It went away within about 20 minutes and never produced anything. I thought that was kind of weird. Nothing else ever came of that either. The next few days were fine so day I tried adding milk into his scrambled eggs. Ultimately not quite as much as I put in the cereal. No stomach issues today. We'll see if there is any kind of reaction over the next couple days. Might ramp it up a little. Dairy is supposed to be very low in salicylate so I would hope we are still within that train of thought. I'll let ya know..

Wow. There has GOT to be a common thread there. Have you considered what it might be? Thats SO much stuff.

No gnus is good gnus. Not much has changed. The breathing thing sometimes is annoying but it's at that point where it happens for a couple hours and then goes away for most of the day. We went through this with the cough. Hoping the end result is the same. On a slightly unrelated note- we had a very big gym meet this weekend. He did great. So much better than last year. The Problem is that all the kids and parents were together all weekend running this thing and apparently everyone is getting sick. A bunch of people have strep now so we'll be going to see Thea tomorrow to determine what he should be doing to fight this off. I feel like since we've started this his immune system has been so strong. Hes been around so much sickness and has barely gotten symptoms before fighting it off. Also, his memory is amazing now too. I don't know if it's a factor of good health, maturity, or a combination of the two but he's really improved in his ability to study and remember facts. Interesting side effects, if that's what they are.

The trend sort of continues.... He had one of his biggest gym meets of the year today. He did great. Took a first place and a couple 3rd's or 4th's out of, if I remember, about 30-something kids. He was a little nervous about it and we haven't been letting him have anything extra at all this past week until last night when he had one of his cakes at a party. He's had that cake 3 times before over the last month and it hasn't affected him at all. Last night he had it at a party that he went to. My wife took him to the party and thought she saw him having other candy with his friends. He flat-out denies it and she's not 100% but he MAY have. Today he has NO issues with eyes, fingers, or coughing, but his labored breathing tic has gotten a little worse. Not concerningly, but enough to make ya wonder... So......yeah.....

Things continue to remain well. Every now and then there's a hint of the labored breathing tic (If you remember, thats the one that started it all, it would be fitting to be the one that ends it all, too). We haven't done any experimenting lately. I want to wait a while and see how long this lasts before screwing it up on purpose.

Interesting, Megan. I know it's going to take a lot more testing to know for sure. It took me 4 months to truly believe that the Natural Calm was helping. It's hard to be skeptical with the results so far but I feel like I have to be just for the sake of being thorough. I think I've mentioned this before but I'm not sure if whatever is causing his cough is causing his brain to cough as a tic or causing mucus to develop in his throat and THAT'S prompting a cough. This is a fascinating journey and he's gotten SO used to dealing with it on a day-to-day basis.

Hi Chris, You'll notice a LOT of people here have gone through a lot of what you've gone through only to find that conventional medicine isn't the answer. My wife is a hospital exec. so you can imagine the pushback I got when I told her we were doing this. She's convinced now! MWAA-HAHAHAHA! Changing his diet was complicated, of course, but the way I looked at it was- we're doing this with or without his consent. As a parent you have to make some tough decisions. Your kid might hate you for doing this in the short term but at some point he'll realize that you made the right decision. Brandon comes up to us every now and then now and in a VERY excited tone says stuff like "I haven't coughed or anything at all today!" He totally knows the difference it's made. Then, of course, he says something like "Can I have some cookies now that it's over???" Of course, I have to go back to explaining the concept of sensitivities and how we're SLOWLY going to work in some different things. Kids are smart and they'll understand what you're doing at some point, but being the parent means having to make the decisions that totally suck. I'm sure you know that. I'm sure there are other ways of going about what we did here. Probably methods that aren't quite as restrictive (though I've read about some that are WAY more restrictive). I figured we would put his fate in the hands of someone who has experienced in fixing this and if he wanted to take his aggressions out on someone he could take them out on his nutritionist, which he did. He cried to her a lot but in the end he knows its for the best. Kids are smart. I hope you get some answers from the pedi!

Improvements continue. There don't appear to have been any affects from the barrage of vaccines. His immune system seems to be very strong now. This cold that has gone around our house twice in the past month seems to have passed him over. If it's hitting him, he's not showing MUCH for symptoms. Cough in at an extreme minimum today. Other tics are non-existent. Wen't out for Japanese last night- the kind where they cook at your table. He was pretty much allowed everything in there except whatever was in the sauces that they provided. They also cook in butter. No affects. As far as treatments- I read through this step-by- step process and we're pretty much already doing everything on this list. It's an interesting read. http://salicylatesensitivity.com/forum/comments.php?DiscussionID=148&page=1#Item_0 This fascinating process continues to surprise me. I looked for an epsom lotion since my son doesn't like baths. The only one I found was Epsom-It and it contains Methyl Salicylate. I don't know what that it but it seems to hit too close to home for me. I understand you can make your own using a standard lotion and epsom salts. I may try that... Just to see...

Hmm... Well, during downtime the cough is pretty much gone. During activity (gym and active playing) it's back in full force. Other tics are not around at all. I'm wondering if he's starting to get the same cold the rest of us here have that is causing a little chest congestion and we're just mistaking one kind of cough for another. It's like the homonym of the human body. I'm not too concerned. Just trying to keep him as hydrated as possible. He doesn't drink enough, I know it.

Oh, one other interesting note- When it gets to this minimal level and the cough comes very infrequently, I find that having him blow his nose helps. There's definitely something in there. He sniffles and you can hear stuff. It's not much but it stops the coughing. WHen he's tic'ing normally (like over the weekend) the nose blowing doesn't help. Only when it's at a minimum. Discuss amongst yourselves. ETA: The breathing thing is still hanging around and the eye rolling, although at a minimum, is still around too. I think those two things (being the most recent tics) were the longest holdouts last time and probably will be this time.

HA! Thanks, Megan. The reality behind that, though, is that if we do get to that point where it's totally clear that medical science is of absolutely no use to us in this case, I've got to be REALLY committed to telling this guy off if I'm going to drive 40 minutes each way with my kid in tow...

Great day. One B+ and the rest A's! He's having a great year. I never thought he's accomplish this much so soon after the ridiculousness that was last year. So proud of this kid. TIcs at a minimal again. Just like last time, it came on quick, hung around a while, then disappeared quick.

Hi Kat, Welcome to the group. There is certainly a LOT of information here and a bunch of very helpful people. It's really a great support group for parents trying to figure this all out. One thing I can tell you, and I have a feeling many would agree, is that if I knew then what I know now, I would NEVER EVER have taken him to a neurologist. I'm totally not convinced that the Tenex that my son is on is actually helping him just like I'm not convinced that the Nexium that I'm on is actually helping me. Coming off it at this point would be more complicated than staying on (for both of is) until we get the dietary changes worked out so I'm going to keep on it for a little longer. I AM, however, looking forward to our appointment with his neuro in March and telling him to suck it. Of course, if there isn't any marked improvement by then, I won't be quite that harsh but we're learning so much even in the just the past few weeks. It just kills me that the route to healing that we're taking is virtually never considered by doctors. I know this is working. It's just incredible challenging and daunting a task and everyone has to be bought off on it for it to be successful. It takes a very strong willed kid to do this. I got lucky. Very lucky. Brandons diet is extreme. I don't think it's necessary to go full-out like this. It would just take a lot longer any other way. Good luck to your and your daughter. I hope you get it worked out.

Too late.... I didn't think of that. Hopefully we won't see much of a affect.

Flu shot, Hep A vaccine, and chicken pox booster today.

Definitely still not out of his system yet. Not AS bad as Saturday, but still not clear yet.

Umm... I think the reason I called out apples was because it was the one thing that he really really wanted the most. Plus, it's in EVERYTHING. I hadn't taken salicylate too seriously until the last couple weeks so I need to pay closer attention to that list. The one thing I do know that he has frequently that is relatively high on that list is popcorn. It doesn't seem to bother him... Most everything else high on the list he's either already off of or doesn't like. The thing that interests me is that dairy is very low on the list and I was pretty sure dairy was affecting him so at some point we'll try that out again and see.

Well.... the best thing about this so far is that it SEEMS like it's becoming a little predictable. Obviously it'll take a lot more experimentation to determine but last night was better than the night before and this morning is WAY better than yesterday morning. Now... as long as NOTHING changes I can still start chalking this up to salicylate. I want to give it some time before we experiment any more...

Well, I don't know a lot about this beyond what we're doing here. Beef isn't really supposed to be an allergen. I know personally wine affects me almost as much as other things affect my son. With us, though, it's mostly throat clearing. I wish I had more for you. Maybe Cheri has more information for you. She's pretty smart!

Hey Rick, If your issue is a salicylate sensitivity then wine is high in salicylate. http://salicylatesensitivity.com/about/food-guide/alcohol/ Beer, not so much. But my guess is that the length of time depends on how long your system has been without the trigger and how much you consumed. My son had less than he'd normally have for cranberry sauce. He's been better since this mornings episode. Tonight will be important to observe. May I ask what your vocal tic is? Is it a throat clearing? If it is, what does it FEEL like to you that causes you to tic?

Over the span of the last 24 hours or so he's progressively gotten worse. Lots of coughing right now. It's usually worse in the morning but nothing like this. He's going to gym now so hopefully that'll "shake" it out of him. After the apples/applesauce, it took a few days to completely go away. Hopefully it'll be gone by Monday this time and then we'll REALLY know what's to blame.

Okay, Thanksgiving was interesting. Started off the day as normal as he's been for the past week at least. We wanted to experiment a bit so he had cranberry sauce at dinner with his turkey and then his cake (same one as the weekend). By evening he was rolling his eyes a bit. Today, more eye rolling. Nothing horrible by any stretch but more than we've seen. I'm really leaning toward salicylate with this. No more experimenting for at least a week. Lets see how long this takes to go away. He's also kinda tired today so that could possibly be part of the eye tic too. A few days of monitoring will tell.

Virtually NO tics. I saw one eye-roll today. Probably 8 or 9 coughs ALL DAY and most of those are STILL in the morning. My thinking is that whatever he's allergic to causes him some post-nasal drop (forgive me if I've already said this) and the reason he coughs so much more in the morning is because he's got a good 8 or 10 hours to build up the gunk in his throat. I'm starting to notice that a simple nose-blowing now helps stop the coughs. Still, there's that and then there are the other tics. Why are the other ones gone? Do we have more than one cause for these things? Lots of questions, but I'm just happy that it's working. We can hammer out the details later.

It's lasting............

This was probably the most tic-free day of this entire journey. Hope it lasts!