samsmom

We came very close to taking Sam to the Handle Institute a couple of years ago. They are based here in Seattle, only 30 mins drive from us. We went to an informational evening and found that most of the discussion was around autisitic behaviors and nothing about tics. Sam had some autistic type behaviors at that time (spinning, waving his fingers in front of his eyes) so we decided to move forward and asked the people at Handle to give us some references. We really wanted to speak to someone who had been thru the course with a child with tics. They took a few days to get back to us and we eventually got one phone number from them but when I called it, the number was disconnected! We weren't able to get any other phone numbers from them. Because of that, we didn't go ahead with it. You have to pay a lot of money up front and that concerned me a bit. Anyway, we went instead to a pediatric OT and learned a few techniques from them. As Sam has grown older, he has really improved as far as those sensory-type behaviors are concerned, even though we never did much of what the OT had suggested... We ended up spending about $200 on copays for the OT visits instead of over $2000 on HANDLE.

We just got a Wii for Sam last week for his 8th birthday. Up to now he's been using an old Playstation. We only let him play on it twice a week - once on a weekend, once on a weekday. He seems to have been much better with the Wii than the PS2. I think it could be partly because he's up and moving around, and there isn't as much movement on the screen as there was on the games he had on the PS2, so it feels easier on the eyes to me. The PS2 always got him wound up and frustrated, but the Wii hasn't had the same effect on him, maybe just because it's still new though.

Funny you should ask that - we haven't but I made an appt a couple of days ago to see his environmental dr in a couple of weeks to discuss this. Sorry I can't help you right now with your question.

It's a tough question, Carolyn. You're smart to be thinking about this already. If I had another child, I can't say that I would not get him or her immunized at all as I agree with the basic principle of immunizing. I guess I would do tons of research into each and every immunization that is required and make a judgment on each one. I would definitely spread them out more - I definitely wish I had asked for the MMR to be done as 3 separate shots instead of combined. I would really be focused on doing as much as possible to promote the baby's health in every other area by taking good care of myself while pregnant, breastfeeding as long as possible and giving the baby the best possible natural diet and environment. I think that the knowledge that you have gained through your own experiences will enable you to give your baby a really great head start

I don't get to this board much at the moment and when I do I never seem to have time to post anything. But I have some free time this weekend so am catching up! We have no family history of TS or anything vaguely in the autism spectrum as far back as anyone can remember. I firmly believe that his immune system is the culprit in his case. In the 3 years since Sam first had symptoms of TS (he was 4 when they started), I would say that the clean-up of his diet (especially taking out aritificial colors) has helped the most. Also, getting him the Transitions lenses to wear in glasses has helped, as it became obvious that bright light was also a trigger for him. We have also been giving him digestive enzymes for almost a year now, and probiotics, as he had a very unhealthy gut. We have also cut out wheat and dairy this year based on allergy test results. I think that all of these things have helped him. He still tics every day but at a much lower level, EXCEPT during spring, when he always gets worse, without fail. This has to be due to his environmental allergies as we found he's highly allergic to most grasses, trees and weeds. We have tried using sublingual drops (thru our environmental doctor) to desensitize him but these have had no effect and so we'll start with shots through our traditional allergist next August. Things that have not helped him - Sam's symptoms got worse a few months after onset when he got his MMR shot. With hindsight, I so wish I hadn't had that done, but I didn't know as much as I do now back then. I have not had him immunized at all since then, and don't plan to at the moment. Some supplements make him worse, definitely fish oil and taurine. Stress also makes him worse, be it good or bad stress. Things that appear to help him = magnesium and L-Carnitine and a safe and predictable structure to his day. Anything out of the ordinary will make him a little more edgy. Hope this helps Sue

I have tried taurine twice with Sam and both times his tics got worse. I give him Peter Gilhams Natural Calm for magnesium. I find L-Carnitine works well for him as far as reducing tics is concerned.

Took me a while to find this so thought I'd pass on the link - www.ocfoundation.org in the winter 2008 newsletter. It's a lot to take in! Guy, thanks for the link.

Funny you should say this as Sam started doing this a few days ago. All the boys in his class learned how to make themselves burp and now he keeps doing it. I have no clue if it's a tic, OCD or just being a boy. Very frustrating though.

Although I have not used quercetin, I have a friend who used it for her s10 year old son who has many environmental allergies and suffered a lot with nasal congestion and asthma. He was on several meds. He does not have TS. He took quercetin (2 am and 2 pm) and also butterbur. He also still used nasal spray and eye drops. She found that this was his best spring and summer yet for symptoms and she highly recommends them. I think she got them both from Thorne Research. I used Moducare and HMC+ for Sam this year but didn't start them early enough to help him with the tree pollens in early spring, but I do think they helped him thru the rest of the summer, although pollen counts here were not too high this year so hard to tell. I am definitely going to use them again starting around January next year to try to get ahead of the game! Sue

Wow. Thanks for the explanation, Caryn. I will read this again in the morning when I am a little more awake! Sue

Caryn I find your viewpoint really interesting. We have no obvious family history of TS or anything like it and I absolutely believe that Sam's immune system holds the key to all of his issues. One thing I don't understand - what does HCL mean? Sue

Just wanted to say that Sam has a lot of eye tics going on right now - started around February, pretty much when the tree pollen started. That's also when he started looking at lights more (mentioned this on another post). We live in the Pacific Northwest so don't have a pool - not really a need for one here When his tics first started (3 years ago when he was 4) there was nothing going on with his eyes - it's only started the last couple of years, and generally in the spring/summer, so I'm sure that it's allergy related. Have never seen it in the fall/winter months. I just got him back on the Xlear nasal spray (have never used Nasonex), and I will keep giving him that twice a day for the next couple of months. We first started using that last year - can't say that it's helped with the eye tics, but it definitely doesn't make him any worse, and at least I feel like I'm doing something to help him with his stuffy nose at this time of year. Of course I'll never know if he might have been even worse without it or not.. We also just restarted desensitizing sublingual drops for his pollen allergies and we also give him Moducare which is supposed to help with 'balancing' the immune system. Sue

Just a quick update. It took almost 2 days for Sam's pupils to return to normal. He had them dilated on Tuesday afternoon and they were almost back to normal on Thursday morning - they were contracting when I shone a light in them. This morning (Friday) I can see that they are smaller than yesterday, so I think even thru Thursday they were not totally back to the right size. I checked in with his teacher today and he is doing way better. The eye doctor wasn't too concerned about the length of time it took for him to return to normal, but we agreed that it makes sense to get him some Transitions glasses. I'll be doing that in the next couple of weeks. Not sure how well he will adapt to wearing glasses but I'm determined to give it a try and will update everyone if it seems to be helping. Sue

I don't have a recipe (but would love to get hold of one) but I can tell you that the Bobs Red Mill GF Wonderful Homemade bread mix is good. Sam is not having any milk, eggs, wheat, cheese or rice at the moment (based on IgG test results) so I was happy to find this. We use soy milk or oat milk, and Ener-G egg replacer in it. Sam loves it. It costs around $4 for a pack which makes one loaf. I noticed that Amazon sell it in bulk too. Sue

Sam had his eyes tested for the first time yesterday. He had drops in his eyes to dilate the pupils. No big deal. The eye test was fine except that his eyes don't converge well so it's tiring for him to read for long periods, so they gave us some exercises to work on to improve that. Today at school he was totally not focused, ticcing a lot in all kinds of ways and really off topic. He came home and I knew immediately that he was having a really bad day and his teacher confirmed that. I couldn't work out what had changed until I looked at his eyes! His pupils are still dilated. I stood his brother next to him by the window and his pupils are hardly contracting at all. I put a call in to the eye doctor and am waiting for her to call me back. But this is the first time that I've ever seen a real connection between something and his tics - there's never been anything this obvious before. I know someone mentioned recently about D2 receptors in the retina increasing dopamine if they are overly sensitive. Has anyone else experienced anything like this? I'm wondering if wearing tinted glasses of some kind would really help him out, as he's been glancing at lights/the sun a lot lately and I think he's overly sensitive to them and is distracted by them, but then looking at them is increasing his tics. Does anyone have any comments or suggestions?? Sue

Sam is also staying awake later than normal. Is your daughter getting plenty of exercise? Also, maybe an Epsom Salts bath would help before bed. But honestly, I work at a school and all the kids just seem more 'high energy' at the moment. I think it's just the arrival of spring, lighter evenings, and the end of the school year in sight! It may just be that - I think sometimes we are just extra aware around our kids and forget that other kids also just experience changes in their behavior patterns at times. Just my opinion (didn't want to leave you reply-less!!) Sue

I'm really interested in what you've been discussing about light sensitivity. Sam goes thru phases of looking at lights - not staring, just kind of quickly glancing at them. He had a baseball game a few days ago and it was a very bright sunny day. He was looking up toward the sun constantly, and his tics, which were already there, became even more exaggerated. It was one of those games that you just want to get done with ... Anyway, I had him wear sunglasses because I knew it was very bright, but it didn't really help. Does anyone know if you can get glasses that will help with that kind of thing over the summer? (We're in the North West so don't need 'em the rest of the year ) Or is there any other way of dealing with that? Has anyone been to an optician with that kind of issue? Just wondering..

We switched to the Feingold diet about 2 years ago. There were no instant changes either way, but on looking back 2-3 months after we had started, we could see how much Sam's overall temperament had improved. After only 3 weeks, I wouldn't worry about any 'off' days. For us, it was just a gradual improvement. His tics didn't go away but were more mild, but his anger and irritability were more of an issue to us and they were definitely helped by the diet over the long term. I strongly encourage you to stay with it - it's just a healthier way of eating for the whole family anyway! Sams mom

We had Sam tested by our environmental doctor using a method called SDET (Serial Dilution Endpoint Titration). They inject the allergens directly under the skin (which creates a little bubble just under the skin) and then measure the size of the reaction to it.

Spring is always our worst time of the year with Sam as he has huge allergies to pretty much every kind of pollen that's been tested so far! He started with symptoms during the spring when he was 4 years old. We have worked on other things which have helped to reduce the severity of his tics, like diet, air cleaner in room, supplements. But he always gets worse in spring. The funny thing is we never knew he had pollen allergies as he never showed the classic symptoms of them. We had him tested because his brother and Dad have many pollen allergies and were amazed at how bad he was. Last spring, we did see a little nasal congestion at times, but that's all! We used desensitising sublingual drops for a year to try to work on making the pollens less of a problem for him but when the doctor retested him after a year of taking them, his reactions were actually worse than on the test the year before!! So we are taking a break from them, and will maybe start him on the immunotherapy shots later this year. I feel glad that our spring here in Washington has been quite cold and wet this year - I think it's helped him so far, although he does have tics at the moment, and they are 90% facial ones, so quite noticeable. Sams mom

I strongly recommend the Feingold diet, or a diluted version of it, to everyone here. We put Sam on the Feingold diet about 2 years ago. He started with tics when he was 4.5 yrs old - he's now 7. His tics were really bad that first year and, through research and info from this forum, I decided that I needed to clean up his diet. I joined the Feingold program because it was pretty close to what I wanted to do, and I knew that without some kind of program to follow, I would struggle to make the changes that I needed to make. I was pretty lazy with cooking for the family.. I spent a week reading thru all the literature after it arrived and made a list of meals, snacks, etc. for the first couple of weeks. Then I went to Whole Foods with the directory and bought all the ingredients. It is NOT easy to start with but it really does just become a lifestyle change after a while. I only followed it rigorously for about 3 weeks. I never felt that Sam had any issues with salicylates so I added those all back in pretty quickly. But it gave me a foundation to work from, and we still work from it 2 years later. Don't be put off by the big changes that you may have to make. Fill in the checklist of your child's symptoms and be sure to look at it again every month or so. It's so easy to miss what you've accomplished if you don't do that. There was no sudden improvement but over the course of 3-4 months it became obvious that it had really helped Sam's temperament. We'd had some problems with him hitting other kids and being very short-tempered at times. That was one of my biggest concerns and is no longer a problem for us.. He's so much more flexible and considerate to others. I read a lot and knew all the bad stuff about artificial colors but never believed that they were a problem for Sam. But it was only after we had cleaned out his diet of colors for at least a couple of months that we saw the effect that they had on him when he did have them (mostly at birthday parties). They have a really negative effect on both his tics and his temperament, but we had never been able to see that so clearly before. Changing your family's diet to more of a Feingold-type diet will only help all of you. The kids will adapt to it really fast, especially if you all eat the same things. I really would encourage you to go ahead and try it in some way. Sams mom

We found that Sam was allergic to just about every pollen there is around here and started him on the drops a couple of years ago. When we retested him a year after starting, his reactions to the tests were worse than the year before i.e. his allergies had grown worse! Our enviro doctor said that can happen sometimes with young kids as their bodies are still growing and changing (Sam is 7). Also, some kids have more saliva in their mouths and therefore the drops become more diluted?? Anyway, I lost my faith in the drops, plus they were $90 for a 3-month supply and not covered by insurance. I plan to start him on shots in the next year and see how that goes. Sams mom

I tried Sam on Nordic Naturals fish oil a couple of times and felt that his behavior worsened both times. I didn't notice a huge difference in tics, but he became more volatile.

Lisa I highly recommend that you find a good naturopathic doctor in your area. They are much more open to the kinds of treatments that our kids need. I don't really have any connection with Sam's neurologist or pediatrician, other than at visits for annual reviews, as they really have nothing to offer in the way of help. We have a wonderful naturopath here who is totally in tune with the kinds of tests and treatments that we want to pursue. Look some people up in the phone book, ask around for recommendations and, most importantly, call to talk to them before making an appointment. Ask them how they would deal with a child with the symptoms that you have described and their answer will tell you if they are the right person for you or not. As much as this forum is a huge help, we all really need that one qualified doctor who can help us out with the tests and treatments that we know our kids need. Finding the right person to share the work will also take a huge weight off your shoulders. Good luck Sams mom

I got this info from the Feingold organization and thought it was worth sharing. Most of us have to deal with allergies and food sensitivities of some kind, and having something like a Martha Stewart publication would sure help to give this issue a higher profile. I've copied the info that I got below. I hope the link will work, but if not, just go into www.marthastewart.com and look for The Big Idea. You can vote once a day up to Feb 7th. It's the leading vote-getter right now Wondering what Martha Stewart has to do with Feingold? So was I - until one of our volunteers sent me a note from our Members Message Board about it. Martha Stewart's blog is about "The Big Idea," a company-wide competition for Martha Stewart staff members to share their own ideas for the future of the Martha Stewart Living Omnimedia. (Okay, I don't know what "Omnimedia" means, either, but it sounds impressive.) The seven finalists are featured on the web site so that the public can vote, and you can vote once a day until February 7. One choice is a new publication for people with food allergies and intolerances. An allergy magazine by someone with her celebrity stature could be a powerful presence, and would surely address issues many Feingold members face. You can go to the following web site to read more about it and to vote: http://blogs1.marthastewart.com/martha/?rs...mepage_Homepage When I voted, a few minutes ago, the allergy-recipe magazine had just edged out the original front runner by 1 percentage point. There are only 5 more voting days, so feel free to forward this to all your friends, or to post it on any message boards you may belong to for people with food sensitivities, so that all who are interested can vote.