Cj60

Hi Gwen, We went to an environmental dr. who works in coordination with an allergist and followed their advice. The practice is definitely alternative; where the traditional drs. we saw had zero helpful advice, this practice was very willing and able to explore outside the box. I asked about PANDAS and Lyme, and the dr. didn't think there was enough reason for us to test for those things (though a Lyme test is still on my list of definite things to test for, just to know for sure). We wouldn't have known how to proceed without their assistance. I can't recommend highly enough finding someone who has experience and advice for what you're dealing with. That being said, fortunately, our insurance covered the visits and the tests we had run, so I know that can color things... Good luck Chris

It's been a long time since my son's breathing tic, and I don't have the time to search my original post on it. But I recall he would take long deep breaths in through his nose (almost like he was trying to breath in one side of his nose), usually toward the beginning of a sentence, interrupting it a little but not completely. Like most of his tics, he didn't realize he was doing it.

I wanted to briefly share our experiences after 1 year of using natural supplements to address our son's tic issues. On August 10 of last year, I posted my first desperate message asking for guidance. At the time, I was completely obsessed with my son's tic onset, and fairly well depressed as well. I couldn't eat or sleep well. My work was affected. So firstly, my sincere thanks to everyone on this board who, by sharing advice and concerns of their own, have helped my family and I to learn some important things and to deal with some difficult times. Of course, everyone goes about dealing with their situations differently. Matters like what help is available and insurance coverage, not to mention the uniqueness of each child's body chemistry, means that there is no simple answer to addressing tics. That said, here's what we've done, what has changed, etc. Tic issues that developed over the course of Spring 10 and which increased by mid summer, to the point that we needed to address them: neck jerk, arm jerk, breathing tic, numerous other tics (facial, finger, ocd-type sensory things, etc.) that were less noticeable to others but which seemed to just keep "piling on," so to speak. Traditional Medical help: Pediatric neurologist 1 (several years earlier when a single tic came, again in the Spring, and went away a couple of months later), Ped. Psych. (same time), Ped. Neur. 2 (just last summer). Traditional Medical advice: If tics become a bother, you can medicate. Ped. Neur. 2 went so far as to say meds. were the only way, and that any other approach was simply quackery. (Needless to say, my faith in the traditional medical establishment has dwindled over the past year to almost 0.) So, with a significant amount of reading and lots of worrying, ... 1) We drastically modified our son's diet. We got medical help to identify food sensitivities. With this information, we eliminated some of the red flag foods, and we started a rotation diet with some of the lesser offenders. We ended up going mostly organic, but by coincidence more than by plan. When one starts reading labels, one finds that it is pretty much the expensive organic style products that avoid the multitude of unnecessary and potentially toxic artificial and preservative indgredients. Changing the diet was undoubtedly the hardest part of our changes. It takes lots of time and energy to do and causes lots of stress and costs money. Eventually, though, it simply becomes what you do. We still read labels, and make mistakes with some of our purchases; my wife and my son complain ocassionally about the diet's limitations; but it's now a manageable part of our lives, with a payoff that outweighs the inconveniences. 2) We started supplementing. We received some alternative medical help with supplementation, very little of which we stuck with, and we have experimented a little on our own, mostly for naught. What we have come to rely on are a few mainstays that are pretty much those that are referred to so commonly on this forum. a) magnesium - Natural Calm (powder form), b ) a potent multivitamin (Kirkman Spectrum Complete (hypoallergeic, powder form); c) occasionally (in addition to the dosages contained in the multi): probiotic, inositol, vitamin D3, epsom salt baths. What we have found: 1) With time (2-3 months), the diet and the mg had a noticeably positive effect, to the point that the less noticeable tics were gone, the arm jerk was almost completely gone, and the neck jerk was far less noticeable, albeit still present. It still is the tic that lets us know when waxing and waning is occurring. 2) The addition of the potent multivitamin, which occured a few months into our journey, had an even more pronounced effect on top of what we had already noticed with the dietary modifications. To an extent, we stopped being concerned about his tics by January, and even laxed up a little bit on some of his dietary restrictions. 3) With the Summer came an elevation in tic activity. Because we see a lot more of him? I don't think this is the case, since we see plenty of him evenings and weekends during the school year, and we hadn't picked up on the increase then. Chlorine? Doesn't swim much. Allergies? ... 4) We will test for inhalent sensitivies in the Fall. We skipped these tests last year because, quite frankly, his arms looked like pin cushions for a month. Now, I suspect that there is some environmental element that presents itself in the Spring, causing an increase in tics. We'll see as the fall comes. 5) We should be more diligent with probiotics / gut health. No more slacking on the diet. Continued search for the ingredient/s in his multi that made such a significant difference. I experimented with Taurine (for reasons associated with some tests we had done last fall), and found that there was an adverse effect with that. I'll be cautious, but continue to ask questions and search for answers. We have all learned a lot over the course of the past year. After a few months I was back to my normal old self (for better or worse). And importantly, we (I should say I -- other family members have been far less stressed by all these things than I have) have learned to accept the issues that we must deal with. Making conscious, deliberate changes did much to help us, too. Chris

Hi, A little over a year ago, my son developed a breathing tic, although it was not as extreme as the one you describe. It started to occur just as we were getting serious about addressing his tic issues. Once we started our adjustments (diet & supplements), the breathing tic went away. I have not noticed it since. Chris

Hi, That does seem like a lot of supplements. You didn't mention brands; are they all "clean" (no additives/artificials)? Did you add them one at a time to see what effects each had? I ask because my son definitely benefits from mg, but recently I was curious and added taurine into his supplements, and the effect was clearly adverse (even though his multi includes a small dose of it already). Also, the multivitamin posts on this forum seem to point to the fact that all multivitamins are not equal, so make sure to supplement a strong, clean one. I would think some sort of test for possible infections (lyme?) might be helfpul. From what I've read on the forums here, they can be there even though there is no readily obvious indicator. If nothing else, by testing you could eliminate it for sure from the list of potential causes. Good luck, and hang in there. If your daughter is happy and bright, well, that's two pretty good things she has going for her! Chris

Hi, My son dealt with constipation for a couple of years or so. Following dr.'s instructions, we even went so far as to administer enemas on two ocassions over the course of the time he was having the issues. And yes, Miralax was what he took during this time to help out. He did have an early episode with tics that came and went, and it was almost certainly around the time he was dealing with constipation. His early tic onset was worrisome, but I never went so far as to investigate treatment, because it went away within a couple of months. And by the time his tics began to manifest again several years later, his constipation issues had been over for a good while (several years). But now I'll go back and see if I can connect some dots. Thanks for the heads up! - Chris

One of the anecdotal things that can be heard from people who have had success dealing with tics by eliminating offending foods is that a good place to start with elimination is with foods that are most common to a child's diet. After allergy testing, the allergist confirmed this to be the case with our son, who ate lots of dairy and had built up an intolerance over time. Introducing a probiotic of some type might assist with the process of clearing the digestive track. Chris

Very interesting!! We live surrounded by corn and other crops. And my son's ticcing symptoms have been more noticeable in recent weeks, just as they were most noticeable this time last year. I never made the connection. Thanks! Chris

Be careful with the gum! Most are filled with lots of ingredients that can trigger tics in our son. He's not allowed to eat it : )

April, I'm nost sure, but it sounds to me like there could be some sort of infection involved if you're talking tonsils and ears. I'd run it by the PANDAS/PITAND forum; you'll most likely get a quick response. Chris

Oops... Forgot to mention the magnesium. Yes, we do the Natural Calm. Our son is 9.5., @ 70 lbs. The magnesium had an effect on stool softness and we experimented with that. Then when we started the Kirkmans SC (magnesium is the second highest ingredient in that, if I'm not mistaken), there was another period of adjustment. But we have it down to 1.5 tsp of KSC in the a.m. and 1 tsp. of NC in the p.m. He manages those doses just fine. Chris

Hi April! Sorry to hear you're stressing, but I'm happy to say you're in the right place. Lots of people on here with lots of help to offer! While the eye roll isn't a tic I have seen in my son, others here have experience with it and will have advice, I'm sure. An important thing to ask from the start is when the last time your son was sick with a strep infection. Tics can sometimes be infection-related, and when that's the case, the steps you take may differ from when they are not infection related. Infection related tics are known to start suddenly, as you seem to indicate. If you can pinpoint a recent infection, you should consult with the very knowlegeable people on the PANDAS/PITAND forum. I've never associated infections with my son's tics, though it's very possible there may be some connection. This is the quick advice I would give for someone who does not see an infection connection: Consider that allergies (including food sensitivites) may have a role in your son's tics. To make sure you're getting the right information concerning testing for food and other types of allergies, look beyond your child's pediatrician. The standard route of 1) pediatrician 2) pediatric neurologist yeilded zero help for us. We found, through this website, an "alternative" environmental doctor who was able to help us consider things that our pedatrician had no clue about. (And I won't even mention the waste of time that was the trip the neurologist.) We had some specialized allergy testing through the alternative practice that yielded information regarding sensitivities (dairy was the biggest culprit in my son's diet). So, don't be afraid to seek non-traditional advice if the tic does not go away on its own, as they certainly have been known to do. The treatment we have come to use to help our son with his "non-infection related" tic is: 1) diet (there's lots to read up on with regard to this, and you'll get great advice here), 2) a magnesium supplement and 3) a potent multivitamin. Kids' dietary sensitivities vary greatly. One good starting point with regard to diet, though, is to eliminate all artificials and preservatives. You can also look at foods your son eats a lot and consider those foods as a potential starting points for an elimination diet. You'll find lots of advice here on elimination diets. The magnesium supplement we use, religiously, is called Natural Calm, and is in a powder form. The multivitamin we use, equally as religiously, is called Kirkmans Spectrum Complete Powder. But you won't have to look far here to find other advice for multivitamins. My advice would be to start both the magnesium and a good, potent multivitamin now, while you're reading up and getting advice from others about how to procede with your son. Good luck! Chris

Hi, Spectrum Complete II lacks the glucosamine sulfate that the original formula had. It was a concern for me, since the SC multi, along with diet, are the keys to the treatment of our son's tics. When I called Kirkmans a couple of months ago, it was explained that the lab was unable to get that specific ingredient up to standards, so they eliminated it, and now call the glucosamine sulfate-less vitamin (it's the same in all other respects) Spectrum Complete II. Glucosamine sulfate may help (like epsom salts) kids with sulfation issues. It's something I keep my eye on. Btw, the flavored (stevia) version of Spectrum Complete still has the glucosamine sulfate. Not sure how long that will last... Continued luck! Chris Just wnet back and did another quick comparison... It seems the delivery of sulfate in the Kirkman multi is something they wanted to maintain. The SC II now delivers Zinc in sulfate form as opposed to citrate, and provides it in a higher dosage. So it seems that there should be little to no drop off of key ingredients in SC II.

Hi, I'm sliding over here from the Tourette forum, where I get help for my son's tics. Sorry for my naive questions... We just pulled a deer tick from the belly of our daughter (almost 5). My wife found it because it was itching her. It likely made its way on to her within the past 48 hrs.- she's been helping lug front yard clean up to the back area of our property where ticks have been encountered before (not quite as far up, though). It wasn't lodged in too well. We've saved the tick. Should we have it tested? Should we put her on an antibiotic just in case? We did this with her older brother when we found one a little more deeply lodged in him several years back. I'd suspect lyme with him, but he presented with tic behavior prior to that episode. If we were to request precautionary abx, what would we ask for? Thanks! Chris

Thanks! You motivated me to do some looking around, and it looks like there are decent alternatives. I wasn't really expecting there to be any. I just did a google and came up with something called Kül Fuel, which looks pretty much like a multivitamin. And this one that looks more like a gatorade type drink, but with good stuff instead of bad stuff. Funny how products like these are around more and more these days http://www.ultimareplenisher.com/ - Chris

Anyone with a good (healthy) substitute for the gatorade / powerade type drinks? Thanks! - Chris

Just a note that environmental allergies may not have readily noticeable symptoms that we most typically associate with them (sneezing, coughing, eye itching, etc.). The first appearance of tics in my son was in the Spring, as it was last year (4 yrs. after the first time). Again, this year the Spring has bought with it a slight increase. When we allergy tested with an environmental dr., we only tested for food sensitivities. What we learned from those tests was significant in how we went about addressing tic issues. Now I'm starting to think it's time to do the tests for inhalants, even though my son never sneezes coughs itches etc. due to allergies. Chris

Hi, I think you'll find this website helpful! My quick recommendations: read the "Helpful threads..." and "Finding medical help" links at the top of this forum. You'll get information for two of your main concerns (what kind of dr. you might seek out, and what kinds of tests to start with). We found an environmental dr. who has helped guide us through some important testing. Most beneficial to us were the food allergy tests (the skin prick kind). Armed with information from those tests, modifying our son's diet was more of a manageable task. But it was still hard, and indeed overwhelming at times. And yes, it starts by spending twice as much time (at least) making your shopping list and doing your shopping. Every detail on the ingredients list is relevant. But, if you stick with it, you develop a routine and it's not long before it's part of your lifestyle. The other most important findings I have had have come directly from the very very helpful people on this forum: eliminating all artificials and all preservatives, eating as organic as we can, supplementing with magnesium (and incorporating epsom salt baths), and supplementing with a potent multivitamin. If you read around you'll see lots on all of these important starting steps. Good luck; I'm hoping things will be better for you and your daughter soon. Chris

Hi, I remember asking the same question! And I still wonder whether there was a little herxing going on with the mg at the start, since one of its benefits is aiding the phenol sulfotransferase system. Maybe helping flush out some toxins that have been built up? I would keep trying it for a little while longer and keep a watchful eye on things. It is one of our absolute mainstay supplements. And please keep us informed regarding the Spectrum Complete. Did you the Spectrum Complete II version? They seem very quickly to have modified the multi. It no longer has the glucosamine sulfate (another ingredient which helps with the pst system). So that's something that will be on our radar. Maybe we'll start suplementing the glucosamine sulfate separately now. Good luck! Chris I forgot to metnion: I'm pretty sure all Natural Calm is all natural, but make sure you don't have a version with artificials or additives. I think one version has calcium and vit. c mixed in, too. Too much calcium can counter the affects of the mg. Might be best at the beginning to go with the pure mg supplement.

Hi Lisa, Thanks for the information! When we had the comprehensive systems test done, our son came back ok with regard to methylation. But he did come back high on dhppa. We used a supplement called Caproyl for a couple of weeks, but being an oil, it was tricky finding a time and a food to mix it into, so it kind of strayed from our radar. We noticed no adverse reaction to it (herxing) while we were able to administer it. Also, our meeting to discuss the results of the test indicating high dhppa came a good six weeks after the test, during which time we had been giving probiotics fairly consistently (although we have again stopped doing so). I remember thinking that maybe his levels weren't as high by then as they had been when the test was administered. We had also started by that time, and had seen positive effects from a good multivitamin. He's been doing well with the diet, the multi (with small doses of inositol added in), and the magnesium, so I've kind of let the Caproyl slip by the wayside. But I appreciate your message; I'm thinking we will get him tested again for the dhppa just to be sure we aren't neglecting something important. And I'll look into the C677t, too. What led you to test for that? Thanks again, Chris

Hi, posting this link to a similar question not too long ago. http://www.latitudes.org/forums/index.php?showtopic=12737 Good luck, Chris

Wow! Thanks for the news concerning the KSC! I just went to order some, since it's a key supplement for us. I got an email reply that I'm not used to getting concering backorder delivery dates. When I called I was told that, indeed, the hypoallergenic (nonflavored) form is gone and not be be back until they get one of the ingredients (glucosamine sulfate) to meet standards, as it had before. Otherwise I guess they'll reformulate? I'm keeping my fingers crossed that that they do indeed get that ingredient to meet the standard. In the meantime, I ordered the flavored version. It has all the things the hypoallergenic version had, plus: natural piña colada flavor, stevia leaf extract, mannitol, starch. We won't run out of the non-flavored for a couple of weeks. At that point, it will be hold breath, cross fingers, and watch watch watch... With regard to the magnesium, our son (9) gets 1 tsp in the pm, but there's there's also some mg in the multi. I add a pinch on top of his multi in the morning, so he's probably getting close to 2 tsp daily. Good luck, and thanks for that infor re the multi, Chris

Hi, My son (9) has been having @ 1.5 tsp. each morning of Kirkman's Spectrum Complete (powder). Megan (Mommyfor4)started a thread a few months back in which she and Lisa (Mythree) commented on noticeable improvements with their newly added multivitamins (Megan uses a brand named Progressive), so I figured I'd give it a shot. I'm very happy I did! Chris

Hi Malke, When we started what was to us a rather drastic diet change, but no where nearly as drastic as yours has been, and some regular supplements, we noticed a general calming of tics within a few weeks. But we were still noticing them plenty. We didn't have a "wow, that's a really noticeable change" moment until we added his multivitamin a few months ago, and that change came quickly, within a few days. I would say it takes time to wean your system of some things, but you've been at this for a while now. I see you don't list dairy as an eliminated food. Dairy was (is) an issue with my son, and I believe that it was a long time in getting out of his system. We had a ski trip last weekend (I'm sad to see the snow go, but maybe I'll be able to save a little $ now), and allowed him a loose diet, including pizza one day and cheese on his taco the next. He had noticeably raised tic levels for the next few days. I'd like to say for sure it was the cheese, but he also ran a mild cold after the trip, so I can't be 100% sure. Though I have not noticed increased tics with colds before... Anyway, I'm sure you've considered dairy. And it wouldn't be a quick challenge, since it takes a while to clear from the system. Good luck with your efforts, Chris

We started using Kirkmans Spectrum Complete powder several months ago after I compared between it, which Lisa uses, and Progressive, which Megan uses. I opted for the Kirkmans soley due to some hunches I had regarding things that were affecting my son. While I was initially drawn to the Kirmans for the ingredients supporting sulfation, it also contains a couple of ingredients supporting neurotransmitter inhibitors, something which, through testing, I knew would be beneficial for my son. While others have made great strides without all the testing, and my hat's way high off to them, if your insurance will cover it, it might be worth your effort to get some tests run. You never know what you might find out : ) Chris