samsmom

We are flying over to the UK next week - just over 9 hours flight time. The flight going over is an overnight one and I really want Sam to sleep for at least part of the time. On previous flights he has often stayed awake the whole time - it's exhausting for him and us, and he does so much worse when he's overtired that we end up struggling with it for days after. Does anyone know of a natural product that would help him to sleep for 3 or 4 hours?

Just wanted to say that we had a lot of difficulty with Sam with tantrums and huge overreactions to the slightest thing for the first year or so after his symptoms started (he was 4 1/2). We found that switching to the Feingold diet really helped him with this. It was not an immediate change but after 2 or 3 months it was clear that he was much more even-tempered and did not flare up every time we said no. I think that cleaning out his diet of everything artificial really helped . Sams mom

Kim I think you've really got a lot of us thinking with this post... I didn't think thimerosal was an issue for Sam as he was born at the end of 2000. But he has had bad periods after the last couple of shots he had (I stopped them a year and a half ago). He was especially bad after he had an MMR shot in December 2005, but looking at one of the links that you gave, it seems that that one would only have had "undetectable traces of thimerosal" ? Sorry if I've missed something in all of these posts, but is there a way of finding out for sure if there was thimerosal in all of the vaccines that he had? Would there be a batch number or something on the doctor's records that could be checked? I sure would love to know how much Sam was exposed to. How did you calculate it for your own sons? Thanks for bringing this up.

Hi Patty A quick reply as I have to run out to get my son in 10 mins. We weren't really aware of any sensory issues with Sam until around a year ago (tics started over 2 years ago). It seemed like we became more aware of sensory issues when the tics started to subside more... He has proprioceptive issues, so was constantly needing to feel weight/pressure and would jump around on the furniture, throw himself into our big bean bag, etc. The OT helped us to work out what strategies to use to help him with this - basically heavy work, like vacuuming, carrying heavy things, digging in the yard.. I can't say that the tics and sensory issues are interlinked, except to say that I think that by helping him work out how to get the sensory input that he needs, we've relieved some stress for him and stress is a big tic trigger for him, along with pollen allergies. Hope this helps I can write more later if you need me to Sue

We looked into the HANDLE program for our son, aged 6, last year. We live in the Seattle area so their office is very close to us. We went to one of the free parent info nights that they hold every so often (worth going to if you live close enough), but felt that the overwhelming area of emphasis in their work was autistic/sensory integration type behaviors. The cost when we were looking into it was over $2000 (all up front), and most of the work is done by the parents at home, with the HANDLE people acting as advisors. I asked for testimonials from other families with young children with tics and didn't get any useable contacts. We were given one name but the person was no longer at that phone number. They didn't come back with any more contacts for people who had used their services for tic-type problems. I liked the people there - some of Judith Bluestone's stories are really compelling - but we did not have a lot of available cash to put into it and just didn't feel that it would be worth the financial cost. We ended up working with a local pediatric occupational therapist to deal with Sam's sensory issues and this only costs us a $20 co-pay per visit. They've been really helpful and I'm happy with our decision to take that route. By the way, I asked our specialist at Childrens Hospital in Seattle (who is well recognised in the field of Tourette Syndrome) if he knew of the HANDLE Institute and he didn't, although they are right there in Seattle too... Good luck

We started the L-Carnitine before any vocal tics had started this spring, and he just never had any vocal tics this time around, so we didn't experience any worsening. We were hoping to prevent them and seem to have succeeded. Like I said, I don't know if it was just down to that, but I would give it a try if you needed it. Faith - I don't know how long it takes to get into the system and really take effect - the worsening that you saw could have been down to the L-C or was maybe just coincidence... Just another of those many puzzles that we face while trying to work out what's best for our kids.... All the best Sams mom

My son, who's 6 1/2 years old, started to have motor and vocal tics when he was 4 1/2. He had vocal tics during the spring/early summer when he was both 4 and 5. When he was 5, he went thru a month of really loud sounds - it was incredibly hard to live with. He didn't have vocal tics at other times of the year - only motor ones. But this spring/summer, he didn't have any vocal tics. I am partly assigning that to the fact that we gave him L-Carnitine this year for the first time. We started it in March (after checking with our environmental Dr that it was okay) and use it daily. We use the 250 mg capsules from Twinlab. I open up the capsule and mix the powder in it with some fruit juice. It doesn't dissolve fully and there's always some left in the cup at the end, but he drinks it without complaint. It's best to give it on an empty stomach so he normally has it when he comes home from school. I have to say that over the past year, we have also really cleaned up his diet, and do give some additional supplements, but the L-Carnitine is the one that we used to really target the vocal stuff. I know that some people have felt that L-Carnitine has not worked for them, but I would certainly recommend trying it if your doctor okays it and the vocal tics are a real problem. Sams mom

I am SOOOO glad that this is getting more publicity now . We started the Feingold diet last year, followed it rigidly for the first 1-2 months, then added more foods back in. But we absolutely never give Sam artificial colors, and almost never artificial flavors, high fructose corn syrup or preservatives. His temperament is fantastic compared to the way he was before we started. I think it has also helped his tics too, as he's way better than he was a year ago, although I hesitate to say that it's just because of the diet. But I wish EVERYONE, tics or no tics, would just try to cut these things out of children's diets. Before we started Feingold, I didn't think they had any effect on Sam but I realize now that I couldn't see what they were doing because he was having something with colors in every day - they are in so many things! and so the effect wasn't obvious.... Only when we cleaned them all out of his diet did we realize how much they were affecting his behavior, and how much better he could be without them. Sams mom

Hi Jeff I remember taking a quick look when I first got my membership packet, but I didn't read the instructions and don't really know how to get around the message boards. But thanks for reminding me about them - I'll take another look!

The info is all on the website www.feingold.org. Just go to 'Do The Diet' at the top of the home page screen and fill out the form. You'll get tons of info in the mail and the website is also useful for general info about the diet. Be prepared to sit down and do a lot of reading when you first get it all!! Good luck S

Forgot to mention that we stopped Sam's B complex when we tried it over a year ago as I sensed that it was making things worse - can't really explain why, just a mother's instinct.. He now just takes B6. Also, I would really encourage you to cut out the artificial additives - you're right that it's overwhelming to start with, but Sam's overall behavior seemed so much better after we did it, and he generally has fewer motor tics than he used to. I attribute this to his little body just having less to deal with. I also didn't know where to start with it, so I enrolled in the Feingold program. It only costs around $70, I think. I just sat down and spent a few evenings going thru their booklet which lists all the OK items, and planned a week's meals. Then I went to Whole Foods with their booklet and spent about 2 hours there finding everything. It was really time consuming and also expensive, but now it's just become routine and I would never go back to what I used to buy. It was 100% worth all the effort. It will become a lifestyle change for you after a few weeks. When Sam goes to other people's houses, I always give them a heads up about mealtimes and if he's going on a playdate I send him with food that's ok for him like the Annie's mac n cheese. I like to think that I'm also helping to convert other families to organic, 'clean' foods! And I was definitely a convenience shopper before all of this so if I can make the change, anyone can! S

Our 6 year old had a couple of bouts of really loud vocal tics over the last 2 years, both around spring/early summer when all his tics tend to be worse (he has lots of pollen allergies). This year I started to give him L-Carnitine from Twin Lab, 250 mg each day mixed in some juice, around March onwards. We have not experienced any of the vocal tics this year. We are also working on desensitising him to the pollens with sublingual drops so I guess that this could also have helped, but I am not willing to stop the L-Carnitine to find that out! We will take a break from it at the end of the summer once the pollens have died down. I haven't found him to be edgy with it at all. Hope this helps S

Any chance it could be pollen related? I only say this as our son, who is allergic to many kinds of pollens, has developed some new tics in the last couple of weeks, after having hardly any since last August! He's doing some weird breathing stuff, and most of what he's been doing is facial. I don't know where you are, but pollen counts have been really high in many areas. It might be worth getting tested for pollen allergies. We would never have known he had them - he never showed the classic signs of allergies - no runny nose, sneezing, itchy eyes - nothing! Just the onset of tics every spring... So you may have developed some without knowing it??

Just wondering if you have tried desensitization with your son at all? We found that Sam had really significant allergies to many grasses, trees and weeds, and he started sublingual drops thru our environmental doctor last May. He has taken the drops daily since then. Spring has always been his worst time of year for tics. So far this year, he has had very few tics compared to previous years, even though the tree pollen count is really high here right now. We will retest his allergies in May this year and then the drops will be refined more to deal with the allergens that are still the biggest problem for him. I am really anxious to see how/if his reaction to the different pollens will have changed compared to last year. Would like to know if anyone else has had success with desensitization with drops or shots or anything else?

Hi there Thought I'd just give a quick update as we saw our enviro doctor again today. We did a retest on candida a couple of weeks ago as Sam had shown candida overgrowths (arabinose and 3-oxoglutaric) on the previous test. We treated him with Nystatin for a month and there was no sign of those 2 overgrowths on the latest test. That's the good news... But here's the bad news - it showed abundant overgrowth of geotrichum candidum on this one!!! This is apparently more aggressive and harder to get rid of than the ones from before!! Our doctor has suggested giving him Diflucan for a month or so to see how he responds. It was a disappointing result, but also very interesting to me, as Sam's behaviors have definitely changed over the last 3-4 months. He does very little of what I would call classic tics. For the first year of symptoms, he was classic TS to me - stamping one foot, banging one arm against his side, banging his chin on his chest, head shaking, and occasionally going thru periods of vocal tics. But we have seen almost none of that recently. I had said to friends only recently that his behaviors now seem more autistic, especially over the last 4-5 weeks, as he's twirling around a lot, waving his fingers in front of his eyes, rolling onto his back, or pushing his face into anything soft (before 4-5 weeks ago, he was just waving his fingers in front of his eyes). He is, however, a bright kid and very social - he wants to engage in social activities with other kids and is quite chatty. Now I'm wondering if this latest yeast overgrowth is causing the autistic types of behavior. What's even more interesting is that we've seen a slight comeback in tics in the last 4-5 days, which coincides perfectly with an increase in pollen counts around here. We know that he has pretty severe allergies to many pollens. We've been going thru desensitisation with sublingual drops to try to combat these since last May. But I'm feeling that maybe the spring/summer months will be tough for him just like they have been for the last couple of years. Although this is all a little discouraging, I feel like we are at least beginning to really see what we need to be fighting here. I would love to hear any comments anyone has about using Diflucan or anything else for this kind of yeast overgrowth. And how else we could help him with this e.g dietary changes etc. And if anyone else has been able to desensitise successfully to pollens using any other kind of method. I'm also interested in the references to histadelics that I've seen recently. Sam seems like a classic case in many ways. I asked the doctor about that today and he said he's been looking for a reliable lab to do good testing on histamines and would like to maybe follow up in a couple of months on that with us. Any input anyone has on that would also be appreciated. Thanks a lot!

Great list, Carolyn. Thank you!

We are currently seeing an environmental physician and an occupational therapist with Sam (to look into possible sensory integration issues), but are now considering a DAN doctor too. I found the recent postings from Patty re. stimming interesting as I think some of Sam's behaviors fit this description. Some of what he does just doesn't seem like a tic, including waving his fingers in front of his eyes, and making repetitive sounds during times of higher stress. There are several DAN doctors in our state and I will contact those closest to us to find out how much experience they have of kids with TS. One of those listed on the autism website of practitioners looks interesting, but shows qualifications of only PhD and CN. Does anyone know what CN stands for? Most of them seem to be either MD's or ND's. Is there anything that I should be specifically looking into when trying to decide which one to go to? Thanks for your help Sams mom

Thanks for all your comments. Wow, I thought as we got further into tests with Sam, we would get a better picture of what's going on, but instead it feels as though everything is just becoming more and more confused!! I am at a loss as to what to do next. Our environmental doctor is very experienced, but not with TS in particular. Our neurologist (actually he's asst. professor in child development and something else..) at Children's Hospital is the go-to guy for TS around here (he contributes quite often to the TSA's newsletters) but he is not supportive of alternative treatments, in fact he even published a paper recently which basically denounced them all . I guess I will take the test results when we go to see our pediatrician on Wednesday for Sam's 6 year well child visit. Maybe she will have something to say about them. If not, I will be back here to see if anyone else has any other recommendations.. Why is it so hard to find someone who knows about this disorder??? I am so frustrated!

OM Thanks for your reply. I'm confused - I thought that people with TS were thought to have levels of dopamine that were too high. Am I wrong on this?

Kim Thanks for this. I think I'm too tired to read the posts that you bumped up tonight. I'll look at it again tomorrow when my head is a little more clear I think you're basically showing me that the lab in France is the best way to get this test done though! Now that we're starting to get some 'real data' about what's going on with Sam, I'm excited but also feeling a little overwhelmed by the info that's coming out of it all. I dropped science studies as soon as possible when I was in school , and am really struggling to make sense of the info that I'm finding. (I studied French and German in college so I can translate the French stuff, but then wouldn't know what the heck it means once I'd done it!!!) Thank goodness for those of you on this forum who have already been there and done it, and are willing to give your time and energy to passing on your knowledge. I am sooo grateful to have you here! Thanks again Sue

Thanks for your replies on this. I did some browsing on the Internet last night to see what else I could find out about SIgA (at least I know what it stands for now!) and in all the research papers etc. that I looked at, I didn't see a test result as low as Sam's anywhere. Pretty scary.. And weird, as he never has had any intestinal issues. Apart from the tics, he's always been healthy, more than most of his friends - no ear problems, stomach problems. Just the occasional cold. Claire, is the porphyrin test only available thru the lab in France? Thanks again

We just got Sam's results back yesterday from his Great Plains and DiagnosTech tests. I was so excited about going to get them! The main thing that jumped right off the page was a really low figure on the stool test for intestinal SIgA (antibodies, apparently). The norm is 400-880 and he was at 31 . The doctor said only 5% of his patients have a figure this low. There was also some indication of yeast overgrowth (arabinose was at 109, where normal range is 0-47, and 3-oxoglutaric was at 0.88 where norm is 0-0.5). The doc thinks we should treat the yeast as this may be what his body is fighting, and getting yeast closer to normal will enable his body to elevate his antibodies?? Wish I'd paid more attention in my science classes.. Does anybody understand this, and does it make sense? Would just like to have a second opinion from anyone who knows! Also, he wants to put him on 100 mgs per day of L-Tyrosine as his VMA level was low (0.27 where the norm is 1-4.7). I think I may have seen some postings warning against using L-Tyrosine on this forum? Am I right? I did a quick search but didn't really come up with anything. Thanks so much Sam's mom

Just wanted to add my two cents here. Sam has had a couple of immunizations in the last 18 months. One was for chickenpox, when he was about 4 1/2 years old. His TS symptoms first started about a week before he had this shot (we only know this because we can see signs of his TS in a video of his preschool play which took place a week before) so we really can't blame that shot in any way for the onset of symptoms. But they did become considerably worse a couple of weeks after. He had an MMR shot on December 20 last year, 6 months after his TS started, and he became much worse a week after that. Knowing what I know now, I would never have had it done I didn't get his DTaP (Dipth, Tet and Pert.) done at the same time, nor his polio booster. And I have no plans to get them done after the MMR experience. He was pretty bad for about 3-4 months after that. We live in Washington state and all the school needed was a form signed by me stating that I had personal reasons for not giving him the shots. The school's only requirement is that we keep him away from school if there is an outbreak of one of the illnesses for which he has not been fully immunized. Sounds fair to me!

Does anyone out there know anything about the HANDLE Institute? The Institute (founded by Judith Bluestone, who wrote The Fabric of Autism and The Churkendoose Anthology) is based here in Seattle although there are HANDLE practitioners in other parts of the country and world. They work with kids and adults with neurological issues of various kinds. We have been considering it for Sam for the last few months, but haven't been able to find anyone who has been thru their program with a child with TS, so are reluctant to pay out for something that appears to show little evidence of success with TS kids. Just wondering if anyone on this forum has had experience or knows of someone who has? Their website address is www.handle.org.

Hi to everyone I just read these messages and really wanted to post a reply. I've been looking at the posts on this forum for a few months now but have never contributed before. So I'm really a newbie like you! It's late and I'm tired, and I'm not even sure how this posting works, but I just couldn't switch off the computer without letting you know that I understand 100% how you are feeling. Our youngest son developed symptoms of TS in June 2005 - he was 4 1/2 years old. I took him to the doctor and the first question he asked was if we had any family history of TS. We don't - something like this was never even close to being on our radar.. It was devastating. I, like you, spent most of that summer either in tears or on the verge of them. I just felt as if my little boy was reaching out to me from the end of a long dark tunnel and I just couldn't reach him. I would wake up every morning thinking for a second that it was all a bad dream, then realizing that it wasn't, and not even wanting to get out of bed and face the day.. A year on, I can only tell you that everything is so much better. Even though we have not really seen any improvement in his symptoms since the initial onset, the things that have made it easier for us are: 1. Just adapting to a 'new' life. Once the shock of what's happening to you starts to die down (I promise that it will), you just get used to the way things are. The symptoms do wax and wane so you do get periods of relief. My 12 year old told me last week that he doesn't even notice the stuff that Sam does any more (and he's a pretty self-conscious kid). We are all so much more calm about it. No magic stuff here - it's just time moving on and allowing you to adapt... It WILL happen. 2. Reading, reading, and more reading. Doris Rapp, Sheila Rogers and many more have written so much of interest. Just search for Tourette on Amazon and you'll find plenty to start with! Sometimes, some of the stuff that you read can make you feel bad, but keep at it. Whilst it won't all apply to your child, it just opens up your mind to all the possibilities and helps you to create a big picture in your mind that you can then break down into smaller chunks to work on (that's how my brain likes to work anyway!) 3. Finding this website and forum. I can only echo what so many people here have already said. You do have to do all of the work yourself. We have only been offered medication by the 'traditional' doctors that we have seen. A few weeks after Sam's symptoms first started, we called the doctor on a Saturday morning in panic as he was slapping his chin down on his chest almost every few seconds. We were given a prescription for Klonopin - the doctor told us he had to recalculate the dosage several times as it was way over what would normally be prescribed for an adult for anxiety, and he was concerned that he had got it wrong. We took the prescription but, thank God, never gave it to him. How could we sedate our 4 year old son with such a huge quantity of this stuff? Shouldn't kids of that age be out running and playing and loving life? It was a heartbreaking few days but it led us down the path of finding other ways. The information that others on this website share with us all is an absolute GOLDMINE. Be prepared to sit and read and absorb for hours and hours. I have a file full of notes from it. It will be SO worth it! I have done this over the last few months and only now feel ready to tackle the issues that I think relate most to Sam. The temptation to jump in and make changes straight away is huge, but we found it better to take things slowly and keep track of what's happening. Do keep going with a daily log. Although I couldn't see anything clearly at the beginning, I can see things now in the notes I wrote back then. Now I can look back at things that happened a couple of weeks ago and start to see some possible connections. I think you do almost have to live with this for a while to get a good picture of what's going on with your child. 4. Finding a good doctor. I gave up on our primary care doctor for Sam - he wasn't interested. We have a new pediatrician who is much more in the know about this kind of thing. I was also able to find a good Environmental physician close by (check for one of these on www.aaem.com). I had already taken Sam to a normal allergist who discovered that he had a huge allergy to grass - and gave us Zyrtec... Interesting, as his symptoms first started in the spring, and also worsened again in spring this year. So instead of popping the pills, we turned to the environmental guy and got more detailed pollen testing done by him. We have started a course of sublingual drops aimed at desensitising Sam. Next, we are going to start the tests to find out what other more subtle food or environmental allergies he may have. As we do have quite a family history of allergies, that seemed like a good place for us to start. 5. Being open with others about the TS. I have found that people have been incredibly kind and helpful when we have told them about Sam. I think it's so important to spread the word about this syndrome and to make sure that people understand why Sam does what he does. Most people just don't know much about it. I have been sharing around my video of the HBO documentary "I have Tourettes but Tourettes doesn't have me" with other parents and teachers. As a parent of a TS child, it can be hard to watch, but it's SO helpful to others to understand that these are normal kids who just want to be treated like everyone else (it recently won an Emmy, I believe). I'm hoping to have everyone at Sam's elementary school (he starts Kindergarten next week - gulp!) watch this soon. I just think it's better to be up front with others rather than have them look and whisper and speculate about what's going on with him. So, although things may not look any better to others than they did a year ago, I feel positive about where we are. Just getting to this website made me feel that I had one foot on the right path, and with enough little baby steps and maybe the odd diversion, we can start to move in the right direction. Please don't despair. Just getting to this point means that you are starting to take control of the situation, and it's a good feeling to start to take measures that could potentially help your child. OK - so much for the "quick" reply! Now I'm just going to try to post this... Here goes...!!!