Cj60

CP, sounds like your son has several stress related things going on at the same time. Not to mention the excitement over not having to wear a dress... I hope you all have a great birthday. - Chris

Well, I've decided to try a different form of Omegas for my son, after re-reading the ingredients of the Flax Fusion (http://www.thebetterhealthstore.com/Better-Health-Flax-Fusion-Omega-3-Flax-Oil-Strawberry-banana-Bottle-16-Oz) I had been giving him. Th FF is a good source of the omegas (high amounts in small doses), but the three gums (guar, arabic, xanthan) gave me pause when I re-read the label. So, I'll give the fish oil (anchovies, sardines) a try. I would have tried the krill, but it's costly in our local stores, and I didn't see it packaged in a kid friendly form. I chose the Nordic Naturals Omega 369 Junior (http://www.iherb.com/Nordic-Naturals-Omega-3-6-9-D-Junior-90-Lemon-Flavored-Soft-Gels/23068?at=0). It's flavored with lemon, but from natural lemon oil, which is a good thing, from what I can tell. The dosage might be a concern, since it's more modest than the FF dosage. I guess we'll see! Chris

Megan, I checked the ingredients of the Flax Fusion. Here's a link with the info. http://www.thebetterhealthstore.com/Better-Health-Flax-Fusion-Omega-3-Flax-Oil-Strawberry-banana-Bottle-16-Oz Again, I'm taken aback a bit. Several ingredients that I was somehow overlooking. Even though it seems that the omegas in it are good, I'm now going to find a new source. So in the space of a few days I discover that two of the three supps I've been giving daily are no longer up to snuff. I recall now that I bought both before learning how to be as careful as I generally am these days, and I guess I've continued with them due to inertia. Checked with our dr. and he recommended Klaire labs VitasSectrum powder as a multi. I'm going to choose today between it and the Kirkman multi mentioned by Lisa. I like the extras in the Kirkman. Have a nice weekend! Chris

Sure thing, Megan. I'll pull it out and check tonight when I get home. - Chris

Hi, Eljomom, When drs. have told me they didn't believe in this or that or the other thing, especially when I've had information indicating that they were wrong, I've gone elsewhere. I would recommend that you try to find someone who does know a little about what you're talking about and get their take on things. It took me a while, and a little bit of sadness, to learn not to trust my son's pediatrician regarding some of the issues we're dealing with. But the fact is he simply isn't informed on those issues, so I don't trust him with them. There are different takes on which allergy test is better for this or for that. I've only been to one allergist, and he and the dr. he works with vouch for their method. It involves skin prick tests to determine sensitivities. I think the difference between the skin prick and the blood tests is that the skin prick distinguishes between delayed allergic reatcions and other reactions. We've only done the food allergies so far. And they took the information from the tests and recommended dietary modifications according to that information. It was a big help to me to have the guidance of a dr. I dabbled with dietary changes a little before our first appointment, and felt really overwhelmed. The dr. has helped us manage our changes. Good luck, Chris

Megan, I wish you good luck identifying possible triggers. And thanks very much for your post. This forum is just so incredibly valuable for so many reasons, some obvious and some not so obvious. For example... I was about to recommend the multi that I had been giving to my son. It's called Animal Parade. For some reason, I was under the impression that it was all ok. But when I just googled it, it looks like it has stuff I thought I had eliminated completely from his diet. I don't know how I could have missed this, and am hoping that, when I get home and check the bottle, I'll find magically that I wasn't so careless, that somehow what we have at home isn't what I just googled. I never would have thought about it if you hadn't mentioned the multi's, Megan. It goes to show how careful we have to be about every little thing. And to suggest that it does make a difference what we give our kids: I took my son off his multi for around a week in preparation for a urine analysis we needed to take. We finally got that taken care of late last week. Curiously, we had noticed a very calm few days toward the end of last week. I even mentioned that we might be seeing some benefits from the modifications to our son's diet. Then, without thinking twice, on Saturday I started him right back on the multis, and added a new supp our dr. recommended. Wouldn't you know? The tics increased. I decided last night that that's it: no more multis and no more new supp, cause one of the two was up to no good... Today, I read your message, double check my multi, and voilá, it looks like the multi is a problem. I guess I now have to decide whether or not to give the new supp another shot. And where to get an acceptable multi... Chris

Lele, my wife and I are in some discussion about this right now... Our daughter is four and her next batch of vaccinations are due within the next year. I will proceed with extreme caution with any future vaccination for either of my kids, mostly because of what I've read on the pandas forum (where you can search and get lots of information on the topic). My son's most recent onset of tics occurred subsequent to the h1n1 vaccination he received last winter. I'm not sure there is a corrolation; he had received no vaccinations several years ago when his first tics presented. But he won't be getting any type of flu shot this year, just in case... Chris

From http://www.knowyourgenetics.com: What is the methylation pathway? Methylation acts as an on/off switch that allows the body to learn how to respond to environmental change. It represents the only cellular pathway that effects both adaptability and structural integrity of the body. Like the simple water molecule, methyl groups are necessary for life. This pathway is directly related to most major chronic conditions. Using our knowledge of the methylation cycle, we assess your results and provide suggestions to help support a healthy body and mind. For a nice visual: http://www.nutriwest.com/articles/homovmsm.htm (This is how I spend my "free" time... Cheers

When it finally dawned on me that night time often brought with it a noticeable increase in my son's tics, that when he was wearing down his tics kind of presented themselves more easily, I went from giving an occasional bath to giving a bath every night (along with, I should add, a second dose of kids calm, which I had previoulsy only administered in the morning). I no longer notice the increase. What's telling to me is that even when I'm too tired to get a bath going, and suggest waiting till the next day, my son wants it. He likes it. I think even he thinks it helps him. I wouldn't call it instant. With my son, I think it's kind of like providing a daily supply of something his body is not getting itself (sulfate). So its the continual, as opposed to immediate, absorption that seems to put his system a little more at ease. 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

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

Good luck with the big changes, Kevin! I wish I could help you with suggestions. I have my eye on salicylates as well, but am not quite ready to tackle them, as the diet presents a lot of work. However, a dr. we see mentioned, when I asked about the phenol issue at our last visit, that there is an enzyme that is efficient at breaking down phenols. We ended up looking in a different direction for the time being, but we may look in that direction again in a couple of months, once we get back to see him... Chris

It's hard not to obsess about all this new stuff, isn't it? My sleeping patterns have been really effected. I think you're right in saying that our kids' unexpected new paths will end up making them stronger in unexpected ways! And us too!! We have been going to a practice that involves environmental drs. and an allergist. It seems they work in tandem. When I had the wherewithall to ask the allergist what kind of allergist he was, I'm not sure I came away with a clear picture. But I believe he's a straight forward immunologist. That is, he gives skin tests for all different kinds of allergens, both food and environmental (we haven't gone through the environmental ones yet). For some of the environmental allergies I think he's able to give shots. While we were there for the testing, lots of people came and went, getting their regularly scheduled allergy shots from him. With the food allergy tests, he detected foods that were causing moderate allergic ractions with our son, none was an over the top, life threatening allergy. He found two 3s (on a scale to 5) and a number of other elevated foods. The 3s were eliminated (for 6 months, then reintroduce and see what happens) and the others were put on a rotation. The phrase the allergist liked to use regarding the food allergies was "there is no pill; the diet is the pill." Thanks for your well wishes; we wish you the best, too. Chris

Thanks for the tips, Trish. He seems to have the same issue at home under our lights as he does at school. He had an eye appt. last week, just in case, and seems all is ok in that regard. - Chris

Hi Trish, I didn't mention diet specifics in the previous post because so far, we have not done as much as many other forum members have done, including you from what I can tell. This is mainly because we were overwhelmed at first with all the life adjustments we were going through, and could only handle so much. But also because the process of testing for foods and getting feedback from the practice we've been seeing has been a less than speedy process. It took our son's arms a while to recover between tests, and dr. appointments are like two months apart, which is of course understandable. Anyway, since a little before joining this forum just over two months ago, we have done the following: - eliminated all dairy - eliminated all artificials and perservatives and any other suspicious ingredients from our son's diet (and ours too, for the most part). This was hard for everyone, especially my wife who does the shopping and had to spend so much more time scouring ingredients on everything we bought, not to mention preparing all the acceptable subsitutes for the things we were eliminating. In essence, if the list is more than several ingredients and we're not sure about one of them, we don't use it. No artificial sweetners like hfcs. We do still allow natural unrefined sugars, raw honey, pure syrups. Following the allergy tests (skin, not blood), we were told to eliminate chocolate and rotate (on a four day schedule) around ten of his commonly consumed foods (chicken, corn, garlic, broccoli, grapes...). The up side of the four day rotation is that we can keep a closer eye on the rotated foods. For example, since we've started the rotation, we've nixed corn altogether, and tomatoes and watermelon as much as we can (I know, sounds like a salicylate issue, no?). Once we give these things a good time out of the diet, we may re-introduce them to see if they are triggers or not. The potential down side of the rotation diet is that there are many foods, including some of the main culprits for many others, like wheat and gluten, that we have not tried eliminating. But we're at a place with the diet now that I can foresee in the not too distant future (maybe over the winter holiday) our being ready to take the next step and eliminate some of those things to see what happens. I should probably avoid using words like "baseline," since I'm not really sure what it means. But this is what I meant to say. Before we attempted any changes in diet or supplements, our son had a couple of tics that were not resolving. Our "baseline" was a regular manifestation of these two main tics (an arm stretch, and a neck stretch). When I started noticing the emergence of more than a couple of less prominent tics, I began to feel the need to do something. Two months or so later, I can say that all tics, the prominent ones and the less prominent ones, while by all appearances on the increase before we started our changes, are more controlled now than they were before we started. They have not yet interfered with school or activities, which is what we were fearing before. The arm stretch would not be noticed by someone who wasn't aware of its history, and the neck stretch manifests mainly during forced quiet times, like reading time at school, but also is more noticeable when he is tired/bored. So we're keeping up with the supplements, keeping a careful eye on diet, considering being more agressive with it if we feel we need to. We're going to try the new supplement recommended by our dr. and see him again in a couple of months. And I guess just keep at it. And I can't say enough about our son, who has taken all these changes in stride, and is at times more aware of his diet and his supplements than I am. Man, I write long long answers, don't I? I'll work on that, too... Cheers Chris

Hi Megan! I read about dmg on a number of websites. It is mostly associated with autism. I've tried it mostly because it is natural and purportedly harmless, and because I saw it as a way to assist the methylation pathway, which may or may not be working properly with my son. Our dr. recommended it, if I understand correctly (I'm not always sure I'm getting everything perfectly clearly) because he saw it as adding glycine, an inhibiting neurotransmitter. So I figured two positives (+ methyl group, + glycine), give it a try. So far, nothing definite on helping or harming. I've noticed a slight rise in tics the past couple of days after several noteably quiet days. But he's back to school today after a week off ("fair week," as it's lovingly referred to around here), so there may have been some underlying stress he was dealing with. I'm stopping with his supps for four days now in order to get an accurate urine test taken, so I didn't give it to him today, and may decide not to start it up again given that I'll be trying the new supp recommended by our dr. Well, that's about that. I hope things continue to be well with you and yours, too! Chris

Hello everyone, I'm posting to share the direction our dr. has taken with our son. Our first visit was around 7 weeks ago. It was just a get to know you kind of visit, but resulted in our dr. recommending two supplements in addition to what we were already using, all of which he approved of (the basics: kids calm, flaxseed oil, a clean multivitamin). I subsequently started supplementing a B6 vitamin, inositol for some minor ocd issues (I've been impressed with its effects even at low dosages), and almost nightly espom salt baths. His recommendations back then were a probiotic which I started then stopped, fearing, as a newbie, adverse effects which may have been imagined, or not. I think I'll try starting it up again... He also recommended, without a thorough explanation (time was growing short and I didn't really know what to ask) dimethylglicine (dmg). I started this only a week or so ago, having finally learned enough about what it does and how it was appropriate for our son. He also requested a urine analysis to measure neurotransmitters. At this week's visit, we discussed the results of the analysis, done through Neuroscience. In essence, our son's exitatory neurotransmitters (nt's) are elevated. And a couple of his inhibitory nt's were through the roof elevated. The explanation was that the body has raised the inhibitory nt's in an effort to counter the elevated exitatory nt's. A new supplement was recommended: Kavinace, from neuroscience. It's supposed to boost the inhibitory nt's. (fyi, https://www.neurorelief.com/index.php?option=com_content&task=view&id=121&Itemid=47) I also asked about how to know if there were a methylation problem, so the dr. ordered a second urine analysis to gauge the methylation pathway. When I read the instructions, I saw that it wants all supps, including vitamins, eliminated for 4 days prior to the collection day. The dr. says we can keep up the magnesium, since it doesn't interfere with the methylation pathway. We can't start the Kavinace until after the collection. Q: So, is anything working for us? A1: The dietary changes, including having eliminated certain foods and rotated many others, have definitely helped keep tics to a baseline level. Before these changes, we had noticed an appearance of a number of tics and no rime or reason to them. These changes have also helped us when we observe increases in tics, as we can try to identify suspected foods more easily. A2: Supplements seem to compliment the dietary changes. Most noteably the Mg and the flaxseed oil. Inositol definitely helps the minor ocd events we've noticed. Not sure about the dmg yet; we're only a week into using it. A3: Espom salt baths definitely help. If we go two days or more without them, a gauranteed rise in tics occurs. Which is what has led me to look at the possible deficiency in sulfates and the methylation process. So, that's it from here! I'll be sure to follow up. Chris

Hi Rick, The advice I might lend is that you see if you can find a doctor or someone with appropriate training to help you out as you start to supplement. Have you looked into the "alternative" dr. route? I believe there's a link here with helpful info. That's how I found our dr. (I'm here to post about our recent visit.) Regarding the difficulty of eliminating problematic foods, you're right, they're everywhere. But don't be overwhelmed. Eliminating bad foods becomes manageable. Not easy, necessarily, but worth the extra effort. Good luck Chris

Hello cagirlintexas, While I can't offer much information regarding your son, I can mention some similarities between your son and mine, who is now 8. We first noticed repetitive movements with our son when he was 4. He had an eyelash pulling movement that persisted for at least a couple of months, and then disappeared. Like you, my wife was pregnant at the time his tics presented. When our concern became serious enough, we took him to a pediatric neurologist, who diagnosed mild ocd, and also to a child psychologist, who diagnosed transient complex motor tics. When I subsequently asked another ped. neur., I was told that the conflicting diagnoses were not necessarily conflicting, that ocd and motor tics can be related. I came to this forum around two months ago after watching some new tic behaviors emerge in our son. I won't go into our whole story, but I will say that this week we had our second visit with an environmental dr. (our regular pediatrician and a ped. neur. were both unable to address our concerns to our satisfaction), and we're pretty certain of the link between stress and my son's tics. That is, they manifest most under stress. I'm no dr., but I wouldn't think it unlikely that the pending arrival of a new brother or sister (congratulations, by the way!) would trigger stress related tics. If you say there is a family history of ocd, there may be some level of predisposition. I'm sure you'll get some excellent feedback here. Good luck! Chris

Thanks for the suggestion! Taking supps via tablets and capsules is a still a bit of a challenge for my son. But I'll look into it and see if I can find something reasonably sized.

Hi Alan, I have included omega 3 (from flax seed oil, since I had read here about potential problems with the fish oil) ever since I started supplementing my son (also 8.5) a little while ago. It's one of his 4 or five daily things. He misses it occasionally, but I can't say for sure whether that missing it has had an adverse effect. Nor can I say that using it has had a positive effect, since it's been a constant along with the other supps I've been giving him. I hope people chime in, because I'm at a crossroads with the supplement I'm using. It's called flax fusion, and tastes like a smoothy. He gets a tbsp daily. But its pricey. Regular flaxseed oil definitely won't work. I tried it a few times, and again this morning just to remind myself. It requires a special palate... I'm going to try making my own 'fusion' to see if the oil stays blended with the fruity stuff I mix in. Chris

I'm following up on a question I asked a while back regarding a supplement we received at our initial visit with an environmental dr. He didn't explain why he was suggesting it; and I probably wouldn't have been able to understand if he had. But now, thanks in large part to this forum, I'm starting to piece a few things together. I wanted and got a copy of my son's urine analysis at his last allergy test session, even though I'm not scheduled for the follow up dr.'s visit at the same place until the middle of next week. He came in high on a few things, including histamine levels (for which he was through the roof high). This would seem to indicate that he is "undermethylated," perhaps a "sulfation" problem. One way to get the methyls back into a system, and help to eliminate the harmful build up of homocysteine, is via TMG or DMG, which would aid in the methylation process and perhaps lower histamine levels. So perhpas the dr. was on to something, even without the urine test results... I'll still keep away from the DMG until I can probe the dr. a little more. In the meantime, I'll add B12, which in combination with B6 and folic acid aids as a precursor to the methylation process. Phenols are a related issue I expect to go over with the doctor. Has anyone ever used No-Fenol to address salicylate related issues? Chris

Hi everyone! My son is now into week 4 of third grade. I was concerned about how his ticcing would manifest in school, and so far it seems to be manageable for him. But I think I'm noticing a little waxing. He has pretty consistently mentioned neck discomfort during the reading session in the afternoons, and yesterday he was more explicit than usual about it. I realize there are many things to trigger someone while at school, but I also noticed last night an increase in the neck while doing homework. So I'm thinking I have to address in some way the discomfort brought on by the reading sessions. His teacher says he's doing well academically so far, but that she's noticing the tics in the afternoons, and I'm just wondering if anyone out there has had any luck resolving the reading position/neck tic deal. Also, on a related note, due to the apparent wax I gave my son a second dose of magnesium last night (1 tsp kids calm, just like in the morning). Should I be hesitant to do this? The follow up to his first doctor's visit isn't for another two weeks. I'm very anxious to see what he has to say about the urine analysis and what steps he suggests. As always, I'm grateful for your help!! Chris

I just googled this: https://www.mytruehope.net/store/_documents/empowerplus.pdf

Hello Andrea, When my son, 8yo, who only recently has been receiving supps for motor tics (ts), manifested an ocd behavior or two (nothing severe, but a little worrisome to me), I started an evening program of inositol (1/4 tsp = 600mg) disolved in a cup of a lemon balm tea and P-5-P (B6 coenzyme, I cut a 50mg pill in half). Since then, there has been no recurrence of the ocd behaviors that I had noticed. This is not to say there are not some still there, and that I simply haven't noticed them (I found the first ones due purely to my son's bringing them to my attention). But I keep a pretty keen eye on him... Chris

Thanks! It's interesting stuff. Yesterday, my son had the second and (supposedly) final set of his skin-prick food allergy tests, and added to the already identified caution foods (including grapes as a food to be "rotated") were apples, which was a surprise, and chocolate, which was a blow! For some reason, he wasn't tested for other the berries. I think the allergist was basing his foods to be tested on a list of his diet that we prepared for him and maybe we left them off, but I wouldn't think we missed them. So maybe we'll have to get back for a third set of tests and see if the berries show up. That would seem to point to a salicylate issue.