cara615 Posted May 3, 2013 Author Report Share Posted May 3, 2013 One more thing, if its not TS then what else could it be? Please don't tell me one of those degenerative neurological diseases. I asked my pediatrician about that and she told me that those are so very rare. Should we be testing to rule those out? Link to comment Share on other sites More sharing options...
Chemar Posted May 3, 2013 Report Share Posted May 3, 2013 No...there are numerous other things that can trigger tics....food & environmental allergens, toxins like mold and pesticides etc, artificial chemical additives to foods like dyes, flavorings etc and a whole lot of other things. We have many parents who have passed through here who have come in thinking their kids have TS and left after finding it was something else triggering and when the offending trigger was removed, the tics resolved. The most common are allergens, but we have also had people whose children were reacting to the flicker on screens or fluorescent lights, new paint or carpeting or woodwork in the home or school, etc etc etc. Have you looked through our helpful threads list yet? I have it linked below in my signature Link to comment Share on other sites More sharing options...
cara615 Posted May 10, 2013 Author Report Share Posted May 10, 2013 Another update. Things were going so well for a couple of days after the HANDLE therapy and now they are out of control! my son has started a full out scream vocal tick and its constant. He also has a grunt and yelp and his normal sound that I can not describe. He vascillates between all of them. I am not sure why it has gotten so intense? Could it be detox from the gluten free diet? Its been 3 weeks now on the diet and his behavior has been nothing short of amazing. He is doing great in school, less frustration, more engagement, happy, etc. Except the tics are worse??? Can any one explain this? Maybe its allergies? I have noticed that he still has excema so obviously we have not eliminated what is causing the excema. I am very distraught over this as his tics never really bothered me much until I realized that we may be dealing with TS. once I had that in my head, everything has gotten much worse. Link to comment Share on other sites More sharing options...
logismum Posted May 10, 2013 Report Share Posted May 10, 2013 (edited) Hi Just wanted to say that my son started a very high pitched scream that lasted about 4 days constant then slowing went back down to his usual "AH" vocal. It was also a few weeks after going gluten free but i thought it was due to me introducing a flavoured fish oil. Have you tried dairy free for a few weeks? A lot of people have seen a connection between vocals and dairy.It's also often a big factor in excema. I've had my son dairy free now for about 2-3 weeks and the vocals aren't nearly as bad as they were in both how often they happen and volume. Since i've had some tests done and it came back my son wasn't good with dairy and eggs it makes a bit more sense now that it might be a factor in his vocals. Good luck Edited May 10, 2013 by logismum Link to comment Share on other sites More sharing options...
cara615 Posted May 10, 2013 Author Report Share Posted May 10, 2013 I will have to try dairy free. I knew it was inevitable. We are waiting for results of an ALCAT test which will tell us what he is sensitive to in his diet. i was just getting used to gluten free so I need to wrap my head around dairy free. my son is a TERRIBLE eater so this is going to be very tricky. Link to comment Share on other sites More sharing options...
logismum Posted May 11, 2013 Report Share Posted May 11, 2013 It is hard but does get easier and we are only 5 months into all of this. My son was the worst eater, No vegies or any meat since he was 18months and he is now 6.5years BUT a bit after we changed to gluten free and his body stopped craving all the carbs and processed sugars he started to eat so much better and continues to be much more willing to try new things as well. he now eats all meats (that he can have) and tries his vegies although i wish i could get him on a almost vegan diet, maybe one day. My son did initially lose some weight due to the changes but has since put it back on thankfully as he has always been small. I hope that it will be the same for your sons eating. Link to comment Share on other sites More sharing options...
cara615 Posted May 11, 2013 Author Report Share Posted May 11, 2013 Thank you for your encouragement! I am not going to wait for the ALCAT test results and start weaning him off dairy now. Pizza will be an issue for us but I figure once in a while can't hurt. Well just have to see. My guy is little too. Always has been a bad eater. But I have noticed that he is taking pretty well to the gluten free. He just hates all the supplements that i have to give him. Not sure if they are even helping. This is week three for us and although I have seen BIG changes in his behavoir and so does his teacher, those tics are still there and are actually worse. how are your sons tics after 5 months of this? Are they noticable to others? How are his peers handling it? most of the time no one notices my son's tics but the screaming one is hard not to notice. He is only 5 so the kids don't care but I worry if we don't get this under control, kids will start to notice. i really would like to avoid meds at all costs. I have to believe that if others were successful at dimishing their child's tice then we can be too. right? Link to comment Share on other sites More sharing options...
logismum Posted May 11, 2013 Report Share Posted May 11, 2013 I also did gluten free first and slowly took dairy and gave homemade pizza as a treat as it was one of my sons faves. Its only been the last few weeks i've taken out dairy fully and kept him pretty much on the same foods every day/week so i can try and see what happens when there is a food change. Last week at school someone had a birthday and he had a cupcake, Well for 2-3 days after vocals were more intense again! I kept my son home from school during the screaming tic. I have seen an increase in tics for my son during the last few months but then he barely had anything for 2 years. We've had a whole list of different tics but 80% for my son is vocal which is socially i think a bit harder to deal with. His teachers were good, we've since moved and his new teacher and class has also been good. His vocal is def noticeable but he copes ok, He likes everyone to know he has tics but wants me to tell them. He is a really good kid and i think getting into trouble is his biggest fear. I really want to believe we will have success with natrual treatment too, I try and read the success stories on here and in Sheila's book often to keep me going. Link to comment Share on other sites More sharing options...
cara615 Posted May 11, 2013 Author Report Share Posted May 11, 2013 are you also supplementing with magnesium? We are on mag, taurine, glutamine, probiotic, and fish oil. I guess it takes more time than I thought to see real results? I thought since I saw very quick results on the behavoir/anxiety side that the tic would reduce as quickly too. We are seeing a holistic MD and will be doing tons of testing to see deficiencies, heavy metals, candida, etc. I hope we find something so i can hope to fix it. We don't have any TS in the family so I have a hunch this is more environmental for my son than genetic. But who knows.... Link to comment Share on other sites More sharing options...
cara615 Posted May 11, 2013 Author Report Share Posted May 11, 2013 I want to mention also that my son's tics started as vocals and remain mostly vocal. Grunts, screams, yelps, mostly. His motor tics do not last for very long but were head jerking, blinking, sniffiling, biting the sides of his mouth, knocking knees. He does pick his cuticles but I don't think that is a tic as much as its anxiety related because I have picked my cuticles my entire life. he starts kindergarten in August and I am terrified. He also has a twin brother (fraternal) that does not have any of these issues (praying he never does). i am splitting them up into different classes next year as it may be better for the both of them. Not sure but my gut tells me its the right thing to do. i have had to put myself on anti depressants just to deal with this Link to comment Share on other sites More sharing options...
logismum Posted May 12, 2013 Report Share Posted May 12, 2013 We initially were seeing a Natropath but she started wanting to give me things to try and rid the tics instead of looking at underlying issues, If tics could be made to go away with just vitamins alone everyone would be cured. She also didn't feel i needed to take him off dairy when i first seen her but dairy is a big no no for candida, She also didn't think i needed to investigate allergies but because of the amazing info on here i knew i had too. Also some of the vitamins she initially gave us i found out that some of the ingredients not listed etc were possible tic triggers. I have since gone back to basics and started again on my own, We curently are doing an anti fungul to kill off the candida and i've introduced a dairy free probiotic. I've also this week started him on a good multi vitamin - half dose that i will increase this week. I've allowed a week in between each new product to watch for intorlerance but so far so good. I have taurine here but havent decided if or when i will try that. Here in my area of Australia, holistic or environmental dr's are very rare. The one i have found is a 8hour drive away but he has done a lot of training etc in the U.S AND he actually believes and can test for candida/leaky gut. So fingers crossed in June i can get some more testing done including heavy metals. I truely feel your pain, I'm not at all a anxious or negative person but when this all started to get out of control and still now i find every day hard. I really don't know why, i try and remind myself that they are only tics and it could be worse but i struggle with knowing my son might struggle now socially in the future.My son is happy so i should be too. In the beginning i cried every day, couldn't eat, couldn't sleep etc. I'm slowly starting to feel ok, I've put myself on a good multi vitamin to help give me a boost in what i'm losing from stress, not eating etc. My son also has mild anxiety and so does his dads entire family, No TS as far as anyone is aware. Stay positive and hopeful and take it one day at a time, I've already realised that this is going to be a rollercoaster ride that will quite possibly last years but it sure is teaching me patience, understanding and a new closeness with my son that we never had before. Link to comment Share on other sites More sharing options...
cara615 Posted May 12, 2013 Author Report Share Posted May 12, 2013 My holistic doctor believes this is leaky gut as well and says she sees this A LOT. She also believes we can get rid of the tics. Too hopeful? She says she has done it already in other children. i would like to talk to the parents of those children. We are also doing HANDLE therapy. Check out www.handle.org. That is also supposed to help with the tics. Right now I just don't know what is going on because i feel like his tics are the worst they have ever been and I am not sure why. It could be allergies or it could be all the things I am doing or my anxiety that he is picking up on. Not sure. I do know that we have to do more testing. We need all the information we can get in order to decide which way our path will go. Do you want to pm with eachother? Link to comment Share on other sites More sharing options...
logismum Posted May 12, 2013 Report Share Posted May 12, 2013 Glad you have found a doctor who believes in the importance of gut health. We have some HANDLE practitioners here in Australia but its super expensive. Feel free to PM me any time, We seem to be at about the same point in investigating and treatment. Link to comment Share on other sites More sharing options...
wagenhammer Posted June 16, 2014 Report Share Posted June 16, 2014 about the magnesium... does anyone know a over the counter recommendation for the dosage/company?? i also heard that B-6 and multi-vitamin help as well! thanks Link to comment Share on other sites More sharing options...
Chemar Posted June 18, 2014 Report Share Posted June 18, 2014 Hi wagenhammer The type of magnesium and dose is very dependent on individual needs...but it is advised to avoid Magnesium Oxide as that is very poorly absorbed, so both inefficient and a waste of money! Many people here like the ionic magnesium citrate formula in the Natural Calm range But any pure magnesium (ie with minimal fillers and no artificial additives) is helpful And the Epsom Salts baths are usually a beneficial extra too! Link to comment Share on other sites More sharing options...
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