mommyfor4 Posted October 22, 2010 Report Share Posted October 22, 2010 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.... Hi Kevin, my ds9 also has a sniffing, throat clearing tic that seems like allergies but magnified. I feel like I should be a sales person for this product but we use a natural cough/allergy product called NIN JIOM and it works fantastic for our ds, great for family colds too! All natural, great beneficial herbs and honey based. May be worth a try. We went the benadryl route early on and found it definately increased his tics. Best on luck... Megan Link to comment Share on other sites More sharing options...
KevinInMA Posted October 22, 2010 Author Report Share Posted October 22, 2010 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? Link to comment Share on other sites More sharing options...
mommyfor4 Posted October 22, 2010 Report Share Posted October 22, 2010 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? I'll admit it is takes some getting used to, but not as bad as Buckleys. The honey takes the edge off but there is no doubt you are getting medicinal plants. But that said ,even my 3 and 5 year olds will take it. My ds is sensitive to taste, smell etc. but he has quickly become accustom to it and asks for it now! It is also fairly cheap about 7.00 CA for the bottle. Megan Link to comment Share on other sites More sharing options...
KevinInMA Posted October 23, 2010 Author Report Share Posted October 23, 2010 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. Link to comment Share on other sites More sharing options...
Chemar Posted October 23, 2010 Report Share Posted October 23, 2010 Kevin, you have checked into PANDAS, yes? and yup, a tiny bit of "junk" can have a very big negative reaction, especially when a child has been on such a "clean" diet I do also want to mention that it is full moon tonight, and as documented by myself and others here over the years, tics, OCD etc often wax with the moon. fact not sci-fi fiction............ Link to comment Share on other sites More sharing options...
KevinInMA Posted October 23, 2010 Author Report Share Posted October 23, 2010 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??? Link to comment Share on other sites More sharing options...
Chemar Posted October 23, 2010 Report Share Posted October 23, 2010 yup. we have tracked the lunar effect for years now. My son actually is doing way better with moon waxing nowadays. We think that balancing all the nutrients and neurotransmitters has made a big difference we aren't the only ones who have noted this and there are some threads with linked research. One suggested that as the moon's gravitational effect impacts the tides, so it also has an impact on our bodies, which are predominantly fluid. Other stuff too. Interesting reading. Obviously not everyone is affected by the lunar cycle, but still worth noting as a possibility Maybe start keeping your own calender on any possible correlation. ER workers talk about full moon time too, and how many more people seem to show up in flares of one kind or another. PANDAS doesn't always have to have OCD although yes, it is unusual not to. Also, OCD does not always manifest dramatically in everyone and may be more subtle and so overlooked as a symptom..... Did the tics ramp up or down with the antibiotics? Sometimes antibiotics can cause an increase in tics as a result of what is known as herxing (herxheimer or die off reaction) which results when the microbes are dying and they release toxins into the system. In addition to PANDAS, related to strep, there is also PITAND, with similar symptoms, but related to microbes other than strep. I dont know if staph is documented as being one of the triggers, but the parents on our PANDAS/PITAND forum here may know Link to comment Share on other sites More sharing options...
Rick43 Posted October 24, 2010 Report Share Posted October 24, 2010 One acronym I've seen used several times on this forum is "ds" or "ds9", etc. I haven't quite figured out what that means yet. I THINK the "s" means "son" and the number stands for the childs age. But I'm not sure what the "d" stands for. could someone enlighten me here? just some light reading on the latitudes forum for me tonight as I continue to understand TS/OCD more on my personal journey get this under control... Link to comment Share on other sites More sharing options...
Chemar Posted October 24, 2010 Report Share Posted October 24, 2010 ds= dear son dd= dear daughter etc Link to comment Share on other sites More sharing options...
KevinInMA Posted October 24, 2010 Author Report Share Posted October 24, 2010 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. Link to comment Share on other sites More sharing options...
Cj60 Posted October 24, 2010 Report Share Posted October 24, 2010 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. Hi Kevin, When we took our son off dairy, and then subsequently found that we had done the right thing, since he was shown to have a reaction to dairy in his allergy tests, we were told that all dairy was to be eliminated, not just cow products. So I think you may be on to something with the goat's milk, and that you're making the right move to remove it. If dairy is causing a negative reaction with your son, it takes a good six weeks to be flushed from the system, so to speak. The results will probably not be immediate. We were told to keep our son off it for a minimum of six months before attempting to reintroduce it. But I'm pretty sure he's off of it for good. We allowed him some rice pudding at one of our favorite restaurants a few weeks ago. And while it didn't have any noticeable affect on him tic wise, he definitely felt it gastrointestinally. I congratulate you with your implimentation of such a rigorous diet. Hang in there, cause I'm pretty sure that his body will require some time to make the adjustments that will result in noticeable changes. Chris Link to comment Share on other sites More sharing options...
mommyfor4 Posted October 24, 2010 Report Share Posted October 24, 2010 (edited) Hey Kevin, the increase in tics could very well have been from a virus especially if he is now sick. Our son ( yes ds9) often will have an increase in tics prior to symptoms of virus showing up, it's almost like an early warning system. Seems that the tics are signals of most imbalances in the body even viruses etc. At least in MHO ( my humble opinion). Hope everyone feels better soon. Our house is also experiencing a similar virus and it is apparently wide spread... seeing as we are in Canada! Megan Oh yah! And I second Chris's post re: goat's milk we too were told no animal milks of any kind, we use Almond milk or coconut, if in a crunch rice ( the kids don't love it) Edited October 24, 2010 by mommyfor4 Link to comment Share on other sites More sharing options...
KevinInMA Posted October 24, 2010 Author Report Share Posted October 24, 2010 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. Link to comment Share on other sites More sharing options...
KevinInMA Posted October 24, 2010 Author Report Share Posted October 24, 2010 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. Link to comment Share on other sites More sharing options...
KevinInMA Posted October 24, 2010 Author Report Share Posted October 24, 2010 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. Link to comment Share on other sites More sharing options...
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