Heather

Hi 7Roses, I believe most of us have gone through that initial crying and worrying stage when we first realized that the tics were happening. I still do cry at times when it all just seems so overwheliming, however, with time, I have become more relaxed with the ticcing as long as it is not irritating to him as it has been in the past. I believe the worst is over for us mainly because of the natural supplements we are taking. My son is 7 and his tics are now minimal and have been for a few months. I am one of the parents that Claire mentioned who has recently discovered an even greater success by trying the "no screen" theory over the last couple of weeks. His tics are now reduced to almost unnoticeable. I do believe they would possibly be gone if we cut out "screens" totally. The "screens" were cut out totally for one week and we saw drastic improvement. Since then he has had short episodes of watching here and there so the tics are still there but very minimal. We are working on a total weaning of TV but have struggled a bit this week with it. I love the prayer box idea!!!!!! The selective mutism is probably somehow related to the chemical imbalance in your son and you may be surprised that once you treat with supplements for awhile, his behaviour may improve in that aspect as well. There are socially-related behaviours that my son displayed for years that I never even would have connected to a chemical imbalance that have now improved since we have been supplementing. Since you are taking the natural approach you will probably never experience the worst case scenarios that you have read about on some of the sites that you speak of. You are going in the right direction and you have to just believe that you will find answers with the proper supplementation. Chemar has given you a start above so I won't overwhelm you with anything else at this point with specifics of what we have tried. Keep in touch. Heather

Thank you all for your responses. Claire, I appreciate you answering my questions during your busy time. I will keep working with this as I am now convinced we have found a main trigger. I have no time myself tonight to post. Heather

Claire, I agree with Chemar (as she said on another thread), you are too valuable to disappear for a month. As Chemar also said, don't worry about slip ups with wording. We all understand the stress that everyone is under during these times and sometimes when quickly adding a post, we say things that might not come out as intended. Believe me, I have my share of posts where I have said things and then want to disappear for awhile. We need you here!!!!! Anyway, if you do check in I have one quick question for you or anyone else who may know something about the photosensitive individuals. How do Gameboys fall into this catergory? Claire, does your son react to gameboys or does he even own one? I am having a little trouble with the no screen this week since it turned cold outside and we just didn't get out as much after school, coupled with the fact that I have been busy with work. I allowed him to play his gameboy for about an hour after school and he went to bed ticcing tonight more than he has in days. I wouldn't have thought the flicker would be the same with the Gameboy since I though it was an LCD screen and it is so tiny. I have tried to do some searches on this gameboy/seizure issue and although there is much info. about the flicker effect of the tv/computer screen, there are limited sites where the gameboy is actually mentioned. Chemar or Ronnas? I know Claire has mentioned you did have some experience with this as well, however, in looking at the back posts I couldn't find anything on what your experience was specifically. Do you have any thoughts on the Gameboy vs. TV/Video Screens? EFGH or Jean, Does your son play gameboy? By the way Chemar, I am very happy for you and envious at the same time with the team of integrative doctors you are working with. I only wish the rest of the medical/alternative community would take this approach. Heather

Claire, I love the family movie night idea. You son is very lucky to have such a supportive family. We had another great day. In the last 2 days the tics have been so minimal they are barely there. We did have minimal TV again today (about 1/2 hour) and although he ticced mildly while watching, it pretty much went away immediately when he stopped watching. I discussed it with him tonight and he was quite open and receptive about it. We have been finding so many other things to occupy our time that it hasn't been that big of an issue. He even had a couple of offending foods, both today and yesterday and didn't react like he usually does. He did tic mildly...although I am not sure if it was the food or the little bit of TV he watched. I am sure it will take some time to figure this out since in order to avoid a severe emotional upset I am not going at it cold turkey. It is also hard on his sister who gets a little upset herself when she is not allowed to have the TV on as usual. Anyway, when I discussed with him tonight how little he was ticcing, he asked me what he was doing as tics....he didn't even realize he was ticcing at all. That is how minimal it is right now. I am so thankful for your knowledge on this Claire, such as screen size, well-lit room, distance away, etc. I am more convinced each day that we have a new key to the puzzle here with regard to my son's sensitivities and this one is certainly a biggie. Heather

Ausclair, My husband was also very slow in supporting me with all of this natural treatment and we had many arguments about it initially. He has a science background and wanted to see clinical studies and reports. Since this is all so new, I basically convinced him we had to go with the anecdotal evidence out of desparation. I would say that he "allowed" me to do this because we had no other alternatives. Although he didn't support the alternative therapy at first, he also did not want to put the medical drugs into our son that were suggested which I am thankful for. Anyway, he has gradually come around to this way of thinking after we have seen so much improvement in our son but it has not been an easy road. That is why I found this site so helpful to me for emotional support since I did not have it in my home. Heather

Just to add to the above, the TV that he watched his show on was a small 12" in the bedroom. I had him sitting across the room with the room as bright as I could get it and the brightness on the TV turned down low. Anyway, maybe it is time for my trip to Best Buy for that LCD monitor!!!!

Well we had a situation this morning that totally messed up my experiment but we will try to get back on track. I talked to Will last night about the "no screen" and surprisingly, he was totally fine with it. He says he is now used to not watching TV so it isn't a big deal. Thank God for the timely "no screen" contest. However, he does have a favourite show on Sat. a.m. and asked if he could please watch that show only. I gave in, partly because he was so cooperative about continuing with it on a regular basis and also not wanting the stressful upset that I knew it would cause if I said no. Anyway, during this hour of TV this morning he ticced pretty much constantly... nothing heavy, just mildly. He stopped watching at 10:00 a.m. That was 3 hours ago and since he stopped watching TV, the tics have stopped too, almost completely. This convinces me the TV is the culprit, although he was ticcing last night when he went to sleep so it could be the residual effect from the pizza yesterday lasting into this morning. My gut feeling though is that it is the TV. Anyway, Claire and EFGH, thanks for your input on these circumstances. As we know, every kid is different but it definitely helps to have a baseline on other's experiences. Claire, as I have said before I never would have even made this connection if it weren't for you sharing your experience. I am so thankful for this forum. Heather

We had another great day which leads me to another question. Claire, My understanding of your situation is that when you avoid TV the tics stop completely. I know that your son has recently been tested for food allergies and since he has been avoiding wheat, etc. the uncomfortable fidgety feeling goes away. My question is, "When he does not watch TV are the tics completely gone no matter what he eats?" Is your removal of the food to stop the uneasy feeling only or is it to stop the tics as well. Today Will had pizza at school which he usually reacts to. He was in the primary choir and they won 1st prize at the festival so the music teacher had a pizza party for them at lunch. I simply didn't have the heart to exclude him from that so he ate 2 pieces of pizza. Since then he has hardly reacted at all. He did have a slight increase when he went to bed but nothing really heavy. We will see what tomorrow brings but his food reactions have typically happened within a few hours after he eats the offending food. If the TV truly does end up being the trigger, I am wondering if we completely remove it, will we be able to reintroduce the foods. I know each situation is unique and the only way we will truly know is by trial and error but I would be curious to hear a clarification on what your situation is with respect to that. EFGH, I know that you have removed offending foods as well. Since you have removed the TV, do you still avoid the offending foods or is he able to tolerate anything that he was previously sensitive to? Heather

Claire, The party thing sounds like a great idea. However, I don't believe my husband will support the cost issue. We have already spent soooo much on new foods, supplements, etc. As you said, I haven't really addressed the idea of no TV yet since I didn't want to make it an issue before I thought it was necessary. This contest just helped me along with the incentive for now and I will have to get into the discussion about it tomorrow night. I am not looking forward to that. I am amazed how you made all the connections with the LCD monitor. Thanks for sharing all of your information about the trial and error with the screens. It will definitely take some testing to observe what he can handle. Will keep you updated. Heather

Claire, My son has been having mostly motor tics lately (facial grimaces and head jerks). Over the last 3 weeks since he had the virus they have changed significantly each day. They have been very frequent at times (every minute) to perhaps 5X an hour at other times. But they have always been present. However, this week there have been hours where he hasn't ticced at all. Since Sunday I would say he has had 3 time periods where they became very noticeable for an hour or so and the time periods were all during stressful situations. Today, since arriving home from school 2 hours ago, I haven't seen a single tic. This has not happened since the beginning of October. Over the last few months they have been mild but never gone completely like this. I am starting to believe more each day that the TV is the trigger. I am so excited by this, however I am also not looking forward to the battle I will have on my hands next week once this NO SCREEN contest is over. He has agreed to the no TV this week primarily because of the town's contest and actually is not even aware at this point of the concept of the TV causing his tics. They have been so mild in the past months that he is hardly aware he is doing them so he doesn't see this no TV week as any big breakthrough like I have. As I have said before, he loves his computer games and although he doesn't watch a lot of TV, he does have a few favourite shows that will be hard to cut out. Thank God it is spring time. Heather

I do still have the original question though of "Why a DVD?"

Hi, Thanks for the clarification EFGH. I see what Claire means now. The problem is we don't have a television with an LCD monitor to test it on. We only have the LCD monitor for the computer right now. We don't really have the means to go and buy one right now, especially when we don't know if this is really the problem. So for now I am left with only the computer to test it out. Heather

Claire, Thanks for the tip regarding the reintroduction of the screen. This may sound like a very stupid question but I do not understand the technology behind the flicker issue at all. Is the flicker not present when you watch a DVD on the regular television? Also, the great thing about this trial week is the fact that the no TV idea is promoted by the schools so there is no chance that he will be watching any TV at school either. I am almost scared to write this but as of going to bed tonight, he has had the best day in 7 months. I am praying that this will continue. Heather

Susanna, You have probably hit it lucky by finding a homeopathic doctor who is also an M.D. I wish I could find one in our area. Anyway, good luck and keep us posted. Heather

Claire, Yes, I am definitely going to pursue this TV issue now since I have already perhaps seen the correlation. I will do anything to help him at this point and I am sure people think I am way too fanatical about some of the triggers (especially the potato sensitivity) but I don't really care since I know the feeling of calmness he has when we avoid the foods. Now I am fanatical about the TV. I went to the grocery store last night and my husband was watching the hockey game and my son was in the kitchen playing with his cards. I kept emphasizing to my husband that if Will came in to shut the TV off. I am stressed for him to even catch a glimpse at this point as I don't want it to ruin the assessment during this prime opportunity when there is no TV watching. I will be actually thrilled if it is the TV trigger and we were able to stop the tics. I would also be grateful for life to you Claire as, like EFGH, I never would have made this connection and even considered it if you hadn't written about it. We do currently have an LCD monitor for the computer so I will test him with going back to that next week initially. I am really enjoying not having the TV on and we are doing so many other wonderful activities to keep busy. My son has made a list of things to do (he has about 20) and we also are doing a lot more chatting as a family. I am going to persuade them not want to go back to it full force next week and get in the habit of doing other things. Heather

Claire and EFGH, I have a question. This week is turn off the TV/screen week in our town. The schools are promoting it with prizes, etc. and kids have to fill out a form signed by the parent. Well, my son is very into doing this and wants to completely eliminate it for the time period. I have always wondered if TV could be a problem, however, I have never completely cut it out since he loves his TV/computer/nintendo and I just simply didn't know how I could do it right now. I was going to attempt once the warmer weather was here and we were moved into our house and we could be outside more. Anyway, he started Saturday and since then my son has watched no TV or computer. Well, it is too soon to tell of course if there is a correlation here, however, he is ticcing less than he has in months. It could also be the anti-viral drops I have been giving him. (always a guessing game) My question is when you stopped the TV watching, how long did it take for it to get out of his system. If by the end of this week, he is still mildly ticcing, can I assume TV is not the culprit or could it take longer to know if this is the trigger? Heather

Hi Susanna, Coral Calcium water is a mineral rich water which will help balance the body to an alkaline environment as it helps in flushing out the toxins that are messing up our immunities. It is only a small part of my treatment protocol but I do feel that it is beneficial in providing necessary trace minerals that many of our foods don't have. I buy mine from Kingsway which has many sites that you can research the beneifts. I don't blame you for wanting to try the antibiotics as I know that they have helped many children with PANDAS stop ticcing, at least until the next outbreak of strep. If you do use the antibiotic, however, it is important to follow with a probiotic to replace the good bacteria in the intestines. As far as yogurt goes, yes, it is very beneficial to replace the good bacteria, however, it is a milk product and my son can't handle it at all. In fact, just 2 weeks ago after a bowl of yogurt which I finally gave in to, he definitely reacted with tics that we hadn't seen in months. Even though your pediatrition and neurologist recognize PANDAS don't count on them supporting the natural treatment. I had a bad experience with a Psychiatrist who works with PANDAS patients but told me I was basically wasting my money on natural supplements. I don't mean to be pessimistic since I hope, for your sake, that the medical doctors do support your desire for natural therapy. My son is 7 right now and started his tics almost a year ago. In the fall they became so severe he was home from school with me for 2 months. He was diagnosed with PANDAS at that point and my first visit with the naturopath was mid-November. By January he was back at school and has progressed in a positive way ever since. We have had a couple of set backs but my naturopath feels they were due to the viruses that he had at the time (Chicken pox and 5th Disease). I just found out one of his friends was just diagnosed with a severe case of strep so I am praying that it doesn't come to our house. We still have a long way to go in heavy metal detox I believe. Time will tell. There should be someone who will answer with how to find a doctor in your area. I am from Canada and not sure of how to direct you. There is a list of DAN doctors on an autism site but I am not sure how to find it. It is on a thread posted here previously. I haven't gone that route yet since I have found a wonderful naturopath and she is confident in a complete recovery. Keep in touch. Heather

Hi Claire, I agree with you 100% and I would definitely be interested in doing what I could to convince someone involved in research to consider it a factor. Let me know of how to contact this person. My naturopath told me that in the cases of tourettes she has treated that the strep virus has been present and her feeling is that this virus as well as other viruses are overactive in the body because of yeast issues suppressing the immune system causing what is known as PANDAS. When I think of my son's disturbing tics from the past and how we have had so much success with natural treatment, I would really do anything to convince other families to at least try some form of natural treatment. It frustrates me to know that there are possible answers and most people in the general public have no knowledge about this treatment. If I diddn't have the Internet and the desire to research this on my own, I would still be struggling with the treatments the medical doctors prescribe. Thank God we didn't go there!!!! I also wanted to say Claire that when you talk of your son's fidgeting it brings back memories of feelings I experienced years ago. There were times I couldn't sit still and one time even ended up in the emergency room with almost a panic attack because I was so fidgety and just couldn't sit still. I paced in the emergency room for an hour before I was seen by a doctor and given a valium or something like that to settle me. It was the scariest feeling and at the time (almost 20 years ago) I never dreamed I would find the answers for why it was happening to me. I do believe now that it was my own yeast/heavy metals issues. Anyway, I do feel that if we collectively tell others of our successes that this treatment will continue to spread in a positive way but not as fast as we would all like to see it happen. In the meantine, if there is anyone I can contact, as I said above, let me know. Heather

Hi Susanna, Welcome to the ACN forum. My situation sounds similar to yours. My son started with eye tics that we didn't pay much attention to. Then he started the sniffing tic which we thought was an allergy and gave him Reactine as advised by the medical doctor. The facial grimaces and minor OCD came a couple of months later and blood tests showed that he had strep and his diagnosis would likely be PANDAS. By this time I had researched much on the Internet about PANDAS and was really unsure about giving him the antibiotic. I read that some children respond positively to the antibiotic and others don't have any reduction of tics with an antibiotic. I had also read about intestinal yeast and how antibiotics can worsen the condition. Anyway, the medical doctor told me if I didn't use the antibiotic that my son could have permanent brain damage from the strep. My husband was adamant that we use the antibiotic as prescribed by the medical doctor and I felt we had to try it so we started it and by Day 8 he was ticcing so bad I had to take him for drives at night to get him to sleep as his whole body was heaving with snorting. I am not saying that this will happen in your case, as each case appears unique and for some children the antibiotic does help the tics. Once I quit the antibiotic I started my son on coral calcium water and made an appointment with a naturopath. Since then he has taken Threelac (for intestinal yeast), digestive enzymes to help him digest his nutrients, DHA Junior (fatty acids for the nervous system) and a multi-vitamin and avoidance of milk products, corn, potato and tomato (which he showed a sensitivity to in testing) His tics were reduced by 85%. He is now doing a detox (with NDF) for heavy metals as his hair analysis showed high aluminum and moderately high lead and mercury. My naturopath feels that his immune system is so malfunctional because of the metals and yeast, that the viruses he encounters cause the tics to manifest. Since the initial diagnosis he has contracted the chicken pox and most recently fifth disease. During the time these viruses entered his body his tics increased and then gradually have decreased so she definitely feels that the PANDAS is viral-related and that we need to put his body back in balance in order to boost his immmune system. She believes once this is done, he will not react to a virus with the tics. Also, while his body is out of balance, he probably has developed different food allergies (sensitivities) that will also trigger tics. The most common food triggers are milk products, soy, corn, peanuts, chocolate and wheat. There are other children, such as Claire and EFGH's sons who react to TV/computer screens. It would be beneficial for you to read through some of the previous threads to view some of the helpful supplements. It is best to see a natural or environmental doctor to determine your sons' specific needs since as I mentioned, each case appears unique and different children react differently to the various supplements. If you would like any other detailed information, just keep asking as there are many on here that are most happy to share their experience to help others. With this research being so limited most of the reports are anecdotal so every bit that we can share with each other is beneficial. I have found some wonderful tips to help my son. He is now almost tic free thanks to the alternative approach. Heather

Hi Ausclaire and Welcome to the site, I, too, have had much success with natural supplements in helping my son's tics which were very disturbing at one point. As Claire mentioned, it would definitely help to read through the previous threads as there is a lot of valuable information that various people have had success with. My son's tics are definitely dying back down again to mild after taking the anti-viral drop over the last 10 days. Heather

Chemar, I have been working over the last few weeks and simply have not had any time to post anything or even check in much to view posts. However, I do want to add here that 2 weeks ago to this day my son's tics suddenly increased to a point that I hadn't seen in months. It is still mild compared to what he has experienced in the past, however, it was a definite increase. There was a virus (5th disease) going around the school which I believe he did have a mild case of. My naturopath feels that since his tics are viral related (he was diagnosed with PANDAS by medical doctors), that this virus has caused the resurgence of tics and she has him now taking an antiviral homepathic drop. They are waning, thankfully. Dr. McCandless feels that viruses may play a big role in tics. Anyway, it is interesting to me that there is a definite waxing of tics in many children during this time....makes me wonder if it is really the virus causing this or not. Claire, Glad to hear your son is doing so well. Heather

Michael, Claire has provided some valuable sites and I just wanted to add that I, too, believe that the problems associated with PANDAS are yeast related issues. Once you have the overgrowth of yeast from overuse of antibiotics and various other things the body's immune system reacts by producing antibodies that attack its own tissues causing various disorders. Some children's genetic make up cause the tics, ocd, anxitey, etc. Other people experience arthritis, fibromyalga, etc. (whatever your genetic make up is). Regardless, they are all autoimmune disorders and it is the immune system gone awry from the yeast overgrowth. Once the yeast gets out of hand, the intestine wall becomes permeable causing all sorts of problems. My son was found to have PANDAS in October with high ASO titers. I had read that with antibiotics many children lose the tics. By day 8 on the antibiotic my son was ticcing so bad (snorting every 3 secs very loudly and body heaving) I had to take him for drives to get him to sleep at night. This went on for 2 weeks all his waking hours. Now I know that sometimes the antibiotics do work to help the tics, but this was not the case with my son. I stopped the antibiotic and started the natural supplements. We first started with coral calcium water very high in many minerals. Once we started seeing the naturopath shortly after she started him on an anti-yeast supplement (Threelac) and within a month the tics were dramatically reduced. We are now working on heavy metals with a natural supplement and the tics are barely noticeable at this point. He also had OCD which has disappeared. There is much valuable information about all of the natural treatment that others have tried on the Tourette's posts. Good luck. If you have specific questions or want more detail on anything, just ask. There are many on here who will be only too happy to help you. Heather

Claire, I think the best link to show the research behind NDF is as follows: www.healthydetox.org/ndf.html I don't know how to post a thread that you can click on the website and it sends you directly there. Sorry, you will have to get your pen and paper out to copy the above address if interested. Once you get to this site, there are many columns down the left side that will take you through other articles and clinical studies with respect to this product.

EFGH, Actually, I have not even given the fish oil in a couple of weeks. We have been very busy with March break and other activities and I kept forgetting. The tics did not worsen so I thought I would see how he would do without it. Right now, the only thing he is taking is the NDF for the metals. I have discontinued all other supplements and have so for the last 2 weeks. He is better than ever!!! Heather

EFGH, From what I understand, you have to just be very careful that you are using high quality fish oil that is free of contaminants. It will cost extra but will be worth it to know it is pure. Dr. Mercola recommends Carlsons for its purity. I use Nordic Naturals which is another highly recommended one free of contaminents. Claire, I have also read a lot about the danger of viruses from vaccines. It is not just the mercury that can cause problems. My naturopath said that it may be viruses causing the tics as well but the goal is to boost the immune system with the detoxing so that the viruses stay supressed and don't cause problems to the nervous system. Jennifer, I have wondered about my son's school as well, as it is very old. You never know these days what is lingering in the pipes, or in the air (mold, etc.)