Karen Campo

I tried tic tamer-- I did not see any real results. Although, I did not use it multiple times a day for three weeks as directed. I do use Bach Rescue Remedy before my son does something that I know will inc. tics and I do see a reduction. 5 drops in a little water. I would try that. kc

Hi- no we gave absolutely no medication for the poison ivy or the bites. Just a little anti- itch cream a few times. I do remember giving him some motrin once and his tics alleviating a little bit. I am just curious about this b/c I wonder if it is the increase of histamine that helps (which would kind of correlate to the low histamine study) or the fact that the poison ivy and bites has a stronger sensation than the tics so the focus goes to the itch not the tic. Who knows. kc

Hi. Your sons tics seem a lot like mine. His head tic started around March and was on and off - not too bad. The day before his birthday (right after his class b-day party where I let him have artificial ice cream, whipped cream and sprinkles) he started the neck tic none stop. This was also the week going into NY State testing. He did the neck tic almost none stop until the day the state testing ended. He still to does it- but its not as bad nor as constant. He does it a lot more when he eats-- which makes me think it has turned into part of an OCD tic. He also started humming a little a few weeks ago ,which he never did before. This seemed to have passed quick. He also has many other tics going on. The main one now is the touching and tapping everything. He had this last year at this exact time and stopped in the summer and did not start again until now. This is the tic I have done my entire life so I'm pretty used to it and understand it well. It's like your body is pulled in all directions. I know this sounds strange but the only time his neck tic really stopped is when he got poison ivy and mosquito bites. Not that I want you to get him bitten up but I feel it's interesting that this took the edge off his tics. My son did have tics last summer but they were not as noticable. After a while you just hope for tics that are not noticable. The neck tic is very noticable so very concerning. Hopefully the change in environment will at least change the tic to a subtle one. I would try to make the summer fun and relaxing-- not too over excitable. Karen

HI-- I understand your sorrow. My son started a bad head tic a few months ago. It was really bad for about 2 weeks but has been present for a few months. The only thing that I can say usually helps my kids stop ticcing is if we go away for a few days. The change in the environment and the routine for some reason seem to help. I don't know if this helps everyone- but, if you can get away for a few days, somewhere peaceful and relaxing (not a lot of noise and commotion) I would try that. Otherwise, with the end of school coming, this in and of itself may calm things down. My son was real bad this time last year, and is having a lot of tics at this time this year. I remember them calming down a few weeks after school ended-- hopefully the same will be true for you this year. Good luck. Karen

Hi- I know exactly how you feel. I too have had tics all my life and it wasn't until my son was diagnosed that i realized I must have TS or TSOCD. My son is now 8 and my 6 year old daughter started having tics about 2 months ago, as well as my 3 year old. I would say that my children, and probably yours as well, have genetic tic disorders. It is a tough thing to swallow and very upsetting but you have to try your hardest (although it is not easy) to fight through the sorrow and try to implement some changes in your household. i would first clean up their diets. Try to go organic and eliminate all artificial stuff from their diets, as best you can. My son thinks it is punishment so we can only clean up his diet so much. I give my kids 1 tsp of Twin Lab B complex (liquid) every day. It tastes real bad but I force them to drink it-- and now they pretty much take it willingly. I feel the b-complex helps with the stress which helps alleviate stress tics. I also give them Carlson's Fish Oil - 1/2 teaspon in the morning. My son seems to tic more when I give him magnesium- but I just started my daughter again on Natural Calm Magnesium-- more for her anxiety issues-- but I am not sure how this will benefit her. I also try to give my son Bach Rescue Remedy before a situation which I feel may trigger a tic-- soccer game, etc . . . I tried the CBT route and found it triggered more tics in my son -- as did habit reversal. he was 6/7 at the time and in no position to habit reverse multiple different tics. I could see it working if you have just a few tics and if you are older. If there is no anxiety or stress, I would skip any kid of psychologist-- as it is not a psychological issue-- but purely a "feeling", as you know. I would pursue the allergy testing, just to see if there are any known allergies. I am currently doing that for my daughter, and will purse for my son (he hates docs so I feel triggering tics by taking him). As for the neurologist, I think based on your history it seems clear she has genetic tics. Unless your going to medicate her right away, there is probably not much a neuro can tell you-- but go if you want a definitive diagnosis or a letter for your schoool district. The one thing to keep reminding yourself (which is not easy!) is that the tics do wax and wane and if you can sit tight, the tics will probably pass soon. Remember, though, that they will probably resurface. It is not an easy thing to swallow and I too struggle with it every day but having tics myself, as you do, we at least know what they are going through and can help them more because of our first hand experience with the same problem they are going through. I tell my children that they have the same "habits" that I had and that I gave it to them to try make them feel that they are not different in any way. lastly, I do find that the tics go away when we change our routine, i.e., go away for a few days. Try a quick trip-- it may help the first cycle pass. Good luck. Karen

sorry but how do I PM??? thanks.

Hi- This may sound strange but has anyone ever noticed their child's tics less when s/he has poison ivy or mosquito bites. My son was having very bad tics and then got a bad case of poison ivy. His tics subsided considerably. When the poison ivy cleared the tics resurfaced. He then got chewed up by mosquitos and the tics lessened again. I wonder if these conditions either increase the histimine level in the entire body including the brain and therefore help alleviate the tics or whether the focus on the itching of the ivy or the bites takes away the urges to tic. I know this is a novel concept but I would be interested to see if anyone else ever encounters this over the summer. Thanks, Karen

Hi-- I find the things most helpful are focused activity. When my son is really bad I get clay and I feel the sensory effect of molding the clay helps. I also take him to the track and have him run-- running, jumping rope, swimming those types of activities seem to help. Try to do the activities when it is cool out so that the heat doesn't aggravate the TS. I also went recently to an environmental doctor who was listed in the Natural Treatment For Tourettes book. I drove over an hour away to really get absolutely no information and paid out of pocket $250.00 for that non-informative consult. I would first go to an allergist covered by your insurance. Get all the testing done and then take that info to an environmental doctor if you wish so you don't pay out of pocket for allergy testing. Also make sure you get referrals from people before you go to anyone-- don't just take a name from a book. The practice we drove to had not been updated since 1950 and was an utter waste of time and money. I was a little upset that this practice was listed in the Natural Treatments for TS book. It was not a place that should be referred to anyone. Although the doctor was very nice and intelligent-- he offered nothing in the way of advice or current treatments for TS. I can also tell you try to push it out to the end of school. This time of the year was the worst for my son last year and it is bad now this year. Hopefully with the end of school things will calm down a bit. I know it is utterly stressful and distressing and you are not alone in your mission to find cures and answers. Karen

Hi-- My son is 8 and has TS (and I too have it). When he was first diagnosed I drove over an hour away to get him CBT b/c I was told it would help with the tics. I believe it was an entire waste of time and money and did nothing but inflame the tics. Having had the disorder my entire life (although not realizing until my son was diagnosed), I asked one of the psychologists after awhile how CBT could ever help with tics as they are not psychological and a real sensation really comes over the individual who needs to release the tic. It is like a very strong pressure in the body part ticcing. His response was it won't help with tics but with OCD. I agree it can help with OCD but I really feel that unless the person has a thought process behind the tic-- than it can't be helped with CBT. In other words, real OCD has an obsession and a compulsion which CBT can help to control but an actual sensory pressure from your mind can't be stopped by CBT. I also believe that if your child has multiple varying tics, like mine does, that habit reversal is also useless-- b/c if a tic changes every week you can't habit reverse 40 different tics. My son's tics change all the time and I can tell you although they are still prevelant they were at their worst when we dragged him to numerous docters and especially psychologists. He had nothing to talk about-- he wasn't stressed, etc . . . what was stressing him was all the effort to cure him. I know that the disorder is devastating and my other two children are already having signs of it. But, I can also tell you that I had it my whole life and, although I have it much less now, it does bother us parents more than it bothers thehn I can also tell you that it is a nuisance but not painful in any way. As for CBT I would save your money for awhile and see how things play out. The tics will wax and wane and hopefully they will be less rather than more. Take care. Karen

Hi. I too have an 8 year old son with tics which seem to have blown up last year and this year around this time. Although he always has some tics, they are not really noticable until now. He has been cranking his neck every second for a week. I also have a 6 year old daughter who also just started neck jerking, so I figure she is soon to be diagnossed. I just wanted to say that I have been giving my kids TwinLab B Complex for a year now and believe it works wonders to reduce anxiety. I give them 1 tsp every day after breakfast. It tastes bad-- best to chase with juice. I think this has helped tremendously to reduce stress tics-- but the allergy tics seem to be bad now. I am going to take my kids to an Environmental Allergist in a few weeks-- we'll see what he says. It is horrible to feel like you can't help your kids. I can say that I have had TS my whole life-- even though I didn't know until my son was diagnosed last year. I was able to hide my type of tics and just thought I had strange habits. I can tell you that while annoying-- they are not painful and it is definitely worse for us to watch as parents. I don't even now if they realize how much they are ticcing-- as I did not. Good luck to all. Anyone out there in New York? Karen

Hi, I am new to this. My son's tics started around this time last year. They exploded around now and lasted strong until June. Once the summer hit, they decreased until Mid September and then lasted until the beginning of November. They then decreased until now. I am becoming convinced that something environmental is triggering the Spring outbreak. He has had a strong neck tic every 4 seconds for over a week now. I just scheduled a meeting with an Environmental Allergist. We'll see . . . Karen