deagar

Just got back from the "Community Pharmacy" that specializes in supplements etc. I couldn't find magnesium taurate though. Would Magnesium (as chelate and citrate) work? It also has calcium (as calcium citrate and hydroxyapatite). Is this combo OK to start with. I thought I would check before I open the bottles. Also, I picked up some Taurine which I had no recommendation for. I guess the adult dose is 1-4 tablets a day and they are 500mg. each. Any suggestions? Thanks - Deanna

When things have gotten scary and stressful, I have sometimes run across threads that have calmed me down. Some were something like...this is not life threatening and they will be OK...OR...things have been stirred up again but it will pass. When I would read these kind of things it would put everything in perspective, it would calm me down and I would realize that we hit a bump in the road and things will get better again. I even pulled out the Serenity Prayer to keep me grounded. So, if anyone has any reassuring thought, calming words etc. it might be nice to have a thread like that so when things get a little unsettling, this thread could be pulled up to reassure and remind people that things WILL BE OK. Just a thought....Deanna

Thank you all so much. It is great getting so many years of research at my fingertips. A couple comments: Giselle - I did the Elisact IgG test and my sons was moderately sensitive to: Cane sugar, Watermelon, Lime, Rapeseed, Canola Oil, Cottonseed Oil, Perch/Mackerel, FD&C Yellow #5, Carob, 1,2 Dichlorobenzene, Polysorbate 60, Propyl Gallate, Isopropyl Ether. I think we have been doing quite well but have on occasion found sugar in items we never would've suspected. We did find out that he could have beet sugar but not cane. The tough part was when an ingrediant listed sugar, I needed to call to see if it was cane or beet. Sometimes they didn't know. Kim: We did have his blood tested for zinc levels and with 60 being low and 130 being high, he scored 64. Originally his pediatrician said he was fine. I pushed the fact that it was low and she said is would be OK to supplement but didn't give me an amount. Chemer: Thanks for the threads to check into. I am taking little steps here because when I first started, it was so overwelming. I really appreciate all you knowledge and time that you put into helping others. My husband thinks I am crazy that I am so obsessed with finding out why my son has tics. He thinks everything will be fine and he will grow out of it. We do have him on Nuerontin, which helps a lot but I don't like medicating him and am also afraid that there may come a time when this so called "safer drug" won't work anymore and I don't want to go to some other drug with possible terrible side effect. The puberty years really have me worried. Thanks to everyone! Deanna

Chemer: As long as I'm learning...what makes oxide bad? Thanks - Deanna

Thanks Kim! I do have some specific questions. According to Bontech, my son should start with approx. 4 capsules and work up. If that is the case, that would be 250mg. Calcium, 125mg. Magnesium and 10mg. of zinc. My naturopath said he could have 600 calcium, 300 magnesium and 20 zinc. Since I'm not totally sold on her calculations after her inositol recommendation, is this too high to start out with in your opinion? Also, I already opened the Zinc (as monomethionine), Calcium (as carbonate, citrate, amino acid chelate) & Magnesium (as oxide, citrate, amino acid chelate) Plus (with Boron & Vitamin D). Is it OK to start with these or do I need to stick with the Magnesium Taurate and Calcium Citrate? Should I email you personally or use this site? Thanks again - Deanna

Chemer: Originally I was considering Bonnie's but after reading many posts, I don't know if I want to go this route yet since it all isn't for everyone. He is only 8 and when I first considered it, he was 6. Cost is a consideration along with the fact that I don't want him to get overwelmed with too many pills and not knowing what works and what doesn't. I'd rather add a little at a time and check for changes and go from there. Does that make sense? Deanna

I am slowly trying new things to help my son with his tics. We did the pyroluria testing...negative. The delayed food sensitivity testing showed moderate sensitivities and we have tried hard to avoid the culprits for about 3 1/2 weeks now with no change in tics. I am seeing a naturopath doc and have tried some drops etc. without any change. Now I want to add in supplements. My pediatrician, although very supportive or alternative methods, isn't that familiar with supplement dosages and my naturopath doc has given some doses but I am not totally sold on her knowledge, especially when it comes to tic disorders. I don't have another place to go at this point so need some guidance, even though I will still be working with doctors frequently. So my question here is...my son is 8 and about 82#, the naturopath doc told me to go with 600mg. calcium/300mg. magnesium/20mg. zinc and 6-9 grams of inositol. MYy neighbor who is a pharmacist thought the inositol was SUPER HIGH. The naturopath wasn't familiar with taurine and therefore didn't offer a dose. She said in general 1/2 - 3/4 of an adult dose is what she would recommend. She just doesn't seem to know much about this and I feel like I am trying to teach her and am not sure if she is taking this seriously since I refer to getting my knowledge from this site. So any info I can get on what others have given their child (similar size) would be helpful for comparison. Thanks - Deanna

I also worried about my son and the blood draws because it does hurt a little. My friend who was a nurse told me about Emla cream or generic litacane cream that you put on the blood draw site about 30 minutes prior to the draw and then cover it with a special bandage.This makes the area becomes quite numb. It does require a prescription but it has taken all the fear out of my son. Good Luck!

Chemer: My sons was on Nasonex for his allergies, which I believe is a steroid. I took him off of it before we had the delayed food sensitivity test and never put him back on it since he appeared to be fine (although he still is on Zyrtec). So could that have been effecting his tics???

The ones that we have done are ASO Antibody and DNASE B. We have always had our neurologist order them so I don't know if you can have them done on your own. Our insurance does cover this. Deanna

I am learning more and more about the "flickers" with CRT screens and we are working to avoid them at home. Our computer has an LCD screen and we just got an LCD screen in place of one of our TV's. Unfortunately it is a big screen which I didn't know wasn't a good idea and recently read the smaller the screen, the better. Anyways, my question is, if we work on limited CRT screens, will there come a time when my son can go to the theatre again without problems? The last time we went, he had a lot of neck snaps and also it felt like his torso was moving a lot so I don't know if that was another reaction to the movie screen or not. We have pursued other tests and he was negative to Pyroluria, didn't have an issue with Mercury/lead via blood test done through his pediatrician. He has moderative sensitivity to a handful of items from the IgG testing done through Elisa/Act that we just began to work on. He does take probiotics daily and a B complex vitamin but that is about all. His tics are currently doing well but he is also on his Neurontin which helps control his tics so I don't really know if it is the meds right now, the waxing & waning process or if the screen issues that we are fixing has helped. I plan to slowly decrease the Neurontin but am a little afraid since school just started and things are going well. I also tried a naturopath for awhile but didn't feel she had a lot of knowledge in this area so I guess you could say I am still searching for a doctor to help guide me a little more through alternative methods. Thanks - Deagar

I just received the results on my sons delayed food sensitivity test today. It showed that he was moderately sensitive to cane sugar, canola oil, FD & C Yellow #5, Cottonseed Oil, Polysorbate 60, Isopropyl Ether, Propyl Gallate, 1,2 Dichlorobenzene, Perch/Mackerel (which I don't think he ever had) and a few others. He is supposed to eliminate these from his diet for 3 months. His favorite thing to eat is something with sugar and I have found that a lot of snacks have cottonseed oil in it. With school starting, does this mean he can't eat school lunches, have birthday snacks etc. for 3 months or does cutting back A LOT help also? Another question, when we have microwave popcorn and there is fake butter for example, I am assuming that there is some Yellow Dye but how do you find out for sure when they don't specifically tell you? Any guidance would be appreciated. Thanks - Deanna

Are plasma screens for TVs just as good as LCD screens when it comes to tic triggers? We are looking into purchasing one and didn't know if there is a difference when it comes to helping tics. Thanks - Deanna

Can you still have a strep infection that increases tics even when you test negative via throat culture for strep throat? If so, do you really need a blood test everytime to see if there is strep? Deanna

Once again, is there a certain amount of time I should be giving this method before I rule it out as an option. I think it is too early now since it has only been a couple months but when is it time to call it quits?

Chemer: She is working with some homeopath and some naturopath remedies. We have been using Gemmo products which I think are homeopath and Unda which are naturopath. So she uses both. She said not to be concerned with his tics but I don't know how much confidence I have with this yet. She has had experience with tics and patients but not Tourettes. I still don't know where my son falls with diagnoses at this point. She was unaware of Pandas and although we still don't know if my son has that, his tics did come back after a strep exposure and previous to that, they were almost non-existent for sometime. It was also spring time when things happened also so the allergens in the air could have something to do with his tics. He also grew over 3 inches last year so can growth spurts have anything to do with increase in tics...he just turned 8. Thanks - Deanna

My son began a naturopathy prescription of various drops etc a couple months ago. The only tic he has currently is what I guess you would call more of neck snapping. He did start this prior to the drops but I think they have increased. I read some place that tics may increase before they get better with a naturopathy routine. If that is the case, is there a time period that I could hope things would be getting better if this is working at all? Or at what point do I say this isn't doing anything and stop? It is quite costly and time comsuming but I want to give it a shot just incase it will help. I also just started a B complex vitamin. Would that increase tics at all in the beginning? Thanks - Deanna

I was wondering if anyone knew how much mag/cal/zinc an 80# child should take? His pediatrician tested him for zinc levels and he came up with a value 0f 64 with 60 being low and 130 being high. She said he was fine in this area. I am seeing a naturopath doc and she hasn't really mentioned anything with vitamins. I pursued the B vitiamin issue and she suggested a good B vitamin but didn't comment on anything else. I want to try the mag/cal/zinc combo but don't know a dosage. Would a pharmacist be a good one to ask? Anyone else have any answers? Thanks - Deanna

I called about the EgG tests today (ELISA/ACT Biotechnologies) and asked a few questions and am now more confused. First off, I thought I read in one of the threads that the test would show sensitivities to foods, even if the child had never eaten them. I guess this in NOT true. I also asked if it would show only current sensitivities and they said it would show anything from 6-12 months ago in addition to current ones. Does this all sound right or is there another place I should check out the delayed food sensitivity test? Thanks - Deanna

Thanks for the info. Out of curiousity, did you just test for foods or the artificial colors, preservatives etc too? I am trying to figure out which test to do and adding in a lot of the extras adds to the cost but it almost doesn't make sense not to do it because so much additional stuff is added to a lot of the foods we eat. I am trying so hard to figure this stuff out before my son hits puberty. I am so afraid of those years. I know I should just relax and take one day at a time but I have read so much regarding tics going crazy during that time and as a parent, I want to help him avoid anything that would make those years harder than they already would be. He is only 8 and so I know we have a few years to go before that time but I am always worried about what might even be around the corner now. I am trying to just relax and breathe but for me that is easier said than done. I'll keep trying and with everyones help here, it makes it a little easier. So thanks to everyone who has helped me or someone else here with advice. Deanna

I have more questions on delayed food sensitivity. My son did real well with his tics for close to a year and then things flared up again. I know he was exposed to strep so we are still dealing with the PANDAS possibility. If he had food sensitivities, wouldn't this be more of a constant problem and not do the waxing and waning if his diet never really changed? If I have him tested for delayed food sensitivities, do I need to repeat the test at some time? Thanks - Deanna

Claire: When I checked on the elisaact site...http://www.elisaact.com/pdfs/EAB_Combos_NonHP.pdf I couldn't find the "food 142" test. Am I looking in the right place? I have info from immunolab but if I am going to pay to have this done, I want to get the most highly reccommended one. Can you help direct me on this?

Kim: I checked out the website and there was another test that caught my eye. Do you know the difference between the Delayed Food Allergies Test (Pediatric) fro $499 (that is 1/3 way down that page) or the Food Allergies IgG 1 & 4 for $249 (that is 1/2 way down that page)? Also, would the "prick" food allergy tests give any of the same results or are we looking for something different when it relates to tics? Thanks - Deanna

Thanks for the info. I did email the company regarding tests and prices and they emailed back stating that a doctor needs to call and order tests and get pricing information and they get the doctors credentials etc. so I don't believe I can get any info on my own. Deanna

My son has a few different tics and when he has tested positive to strep, the same one tic went wild both times. Has anyone else ever experienced the same thing where one certain tic responds more to strep than any others? It may just be a coincidence. This may not be a PANDAS question but I wanted to do the Immunolab blood test for food sensitivity and thought it ran $300 but when my naturopath doctor checked into it, she said it was $600. Has anyone had this done recently or do you think she got the quote for the FULL testing including environmental instead of just food? Thanks - Deanna