Giselle

Hi there, is anyone using either of these products or something similar? Apparently they also kill intestinal yeast. If you are using them can you use them mostly for the yeast killing purpose? I mean can you take them with that intention mostly, not just for digesting phenolics? Thanks, Giselle

Hi Sandy! Welcome to Latitudes! I'm so glad you found us. From what my son's doctor says "tics are tics" and he told us that whether or not there was a vocal component was only a matter of classification and irrelevant. An Irish Wolf Hound and a Scottie are both dogs - just different. He was telling us this when we first went to see him and my son had motor tics only and we were so worried about it being Tourettes. Well the vocal tics came and there truly was no difference - they were both tics. And we did the same thing for both. I can see why you found us - your reluctance to take medication. That is how I found this board as well. We had an experience that made me realize that perhaps medication wasn't the answer. We had taken him to an amunsement park and at some point during the day he ordered a strawberry icecream cone. Within minutes his tics went off the charts - I would have thought he was having a seizure had I never seen the tics before. I realized if something he ate could make them that much worse then perhaps something he didn't eat could make him that much better. And it was true. We had allergy testing done (delayed food allergy testing, not the scratch test - although we had that done too but it wasn't near as illuminating). Turns out he was allergic to gluten (wheat, oats, rye, barley, etc), casein (milk protein), corn (that's a huge one), tomatos, bananas, soy, dyes (no surprise), cashews, and a few others that aren't nearly as impactful. When we eliminated these from his diet it eliminated about half of the tics. We then found out that he had yeast overgrowth pretty bad - we dealt with this and still do as this one is a toughy but you get to know the signs when there is a bloom. We heavy metal tested him and found he was high in lead which corresponded to a deficiency test which told us his deficiencies. He was having a real tough time synthesizing and processing B6 (now he takes P5P which is one step further broken down and this works). Because of this B6 problem his copper to zinc ratio was out of whack and this leads to a build up of lead. Lastly we tested his neurotransmitters and found he was really low in dopamine, serotonin, and epinephrine - finding this out really helped with his OCD and as a result with his tics too as it seems many of his tics are OCD in nature as he has to "get them right". As you read people's stories and questions here you will find that people come to their tics from different avenues. Some have pyroluria (we tested for that but he didn't have it - but many here can tell about that. Many have food allergies, some have the B6 problem with the yeast, PANDAS and many other things. I think of it like a cold - there are hundreds of viruses that cause the human cold but our bodies can only do certain things in response to the cold - conjestion, itchy eyes, sore throat, cough. It's that way with tics -the body can only do so much in response to what it feels are assaults or toxic loads - just find those burdens and eliminate them and the tics reduce or may be eliminated. I totally think you should go see this doctor, and as Chemar says, be completely in control of your care - evaluate what he/she says, the medication they might possibly prescribe, etc. Then perhaps get the opinion of another doctor - one like many of us here use - either an Integrative Doctor, DAN Doctor (Defeat Autism Now), or an Environmental Doctor - they all use traditional testing but follow a protocol that looks at the things I've described above like allergy, deficiency, toxic burden. Read all that you can here and over at Brain Talk Communities http://brain.hastypastry.net/forums/forumdisplay.php?f=253 While over there you might like to go out of the Tourettes forum and investigate the many others to see if they apply to you. And please keep in touch and let us know what happens! Good luck on getting off to a good start on this new journey! Giselle P.S. My son, whose tics were very severe, now only tics just before, while and just after he gets sick! Yeah!!!!!

WHOO HOO! YOU GO GIRL! So proud of you! Good luck and have a glorious time! Giselle

Hi Simon, a DAN doctor is a doctor who practices by the DAN protocol - DAN stands for Defeat Autism Now and they do many tests like we've been discussing to find out what the toxic burden on the body is and then offer solutions to help reduce the toxic load. I expect that many of the tests COULD be done by your doctor but many doctors are not familiar with them or don't believe in them because they've not been trained to do them - if he/she is willing and familiar with the tests then you have a wonderful doctor. I think the tide will turn when doctors look to the nutritional way of seeing the body but as of today they only get a week or so of nutrition in med school (if that!). Most of the tests we are talking about require a doctor to order them, and for sure a doctor to understand the results so I would most definitely encourage you to look for either an integrative, environmental, or DAN doctor. They could also possibly save you lots of money because once you tell them about what's going on with you they might be able to rule out some of the above tests and hence save you money. I know our DAN doctor is treating some patients who live in Japan and has conferences with them over the phone so if you aren't in the US I think this can be done. There is also a Dr. Robbins, I believe, who's an evironmental doctor out of Florida who will also do the same, at least he used to. Giselle

Hi Simon, I agree they are all important and should you test that something is an issue for you, acting on the test results will give you so much relief you will think that that was the most important test. But I think I might try a pyroluria test first because you will find so much relief getting the extra B6 and zinc that having that would require. The other really important one would be the yeast test (OAT). It seems soooo many people with TS have a yeast problem that the sooner you get on that the better and it will help with all the other things that come down the line. In other words, if you start dealing with the allergens but still have yeast you will not see the results as quickly. And then that would be the very next thing I would do - the delayed food allergy test - so important. Then the heavy metals test. Should you have heavy metals having done all the rest will help you to be healthier to go through the process of eliminating them. Now if you get the doctor Chemar is talking about they can do many of the tests all at once. Of course that's realizing the costs all at once but it would definitely get you going a lot quicker. An Environmental doctor could also help in this as they would do the same protocol. Good luck and keep us posted. Giselle

Kim, that's amazing - the dendritic cells and immune disregulation! Thanks so much for posting all of these articles! Giselle

Hi there, I know aluminum is really tough on the system. And just the fact that the immune system is challenged by any vaccine I think would do it. I would suggest extra probiotics to help the gut do its immune thing and extra B12. Hope this is short lived, keep us posted, Giselle

Oh my gosh!!!! Most definitely!!!! If you have any of those things and can address them I guarantee you will feel better and most possibly tic less! Our own dear Carolyn is proof of that! She took the tests, did what was necessary and is med free and doing very well! Please please have the tests and let us all know. I'm so excited that you are considering this step - I know it will be hard work but soooooo worth it! Good luck and keep us posted! Giselle

Hi Chrissy, it sounds to me (not a doctor but my son has the same thing) like he has a tic disorder (much like Tourettes) as well as OCD. If you go over to the Tourettes board there is a lot of information about having both these things together as they very often go hand in hand. Good luck, Giselle

Hi there, it can be mercury but it can be other things like deficencies as well. My son has vitamin deficencies and an inability to properly process B6 which causes lots of chain reactions. His neurotransmitters are all out of whack as well and we are trying to properly balance those with precursors 5HTP and SAM-e and it is working quite well. Read lots here and over on the Tourettes board as many Tourettes people have cormorbid OCD and they use lots of alternative treatments over on that board. Good luck, Giselle

Hi there, OCD in my opinion. But don't be upset - knowing what it is is just the first step in helping to release yourself from the compulsions. Looking around here and over on the Tourettes board (many Tourettes people have OCD as well so there is lots of information over there) will definitely help you. Good luck, Giselle

Hi there, I posted a while back about neurotransmitters so will attach a link: http://www.latitudes.org/forums/index.php?showtopic=1408 He's been doing really well on this regime until just recently when he got a horrible cold but it is already starting to settle down now that the cold is almost completely out of his system so I think that it was just the added burden of the cold that overloaded his body. I'd really suggest getting a neurotransmitter test through NeuroScience - it really helped us with any guessing. It only cost $160 and tested sooo much! Giselle

Hi there, my son also has tourettes and OCD. He takes 5HTP, SAM-e, Taurine. He takes 200mg twice a day of the SAM-e but this was done under a doctor's care. He weights almost 60lbs and is 8 years old. He had a neurotransmitter test done through NeuroScience which indicated he had low dopamine, serotonin, nor-epinephrine and high epinephrine, histamine and GABA. He was doing amazingly well and we saw no OCD since June of last year - but he recently got a horrible cold and it effected his OCD. I'm already seeing it calming down some but we have a ways to go. I've actually got a call into his doc to see about inositol. What was super nice about his long period of no OCD was that his tics were also next to nothing because his OCD manifests mostly as getting his tics "just right". During this cold period I had another neurotransmitter test done to see what was up. Will let you know what it says. Giselle

Hi Kim, I'm sorry, I forget where you live, but here in California you may decline some and choose others - we were able to anyway. Giselle

Hi Kim, yes he's having a few tics as he got really sick and now the red bumps so perhaps that's all it is. Thanks, Giselle

Whoops! Sorry all! here goes again. . . http://ajplegacy.physiology.org/cgi/conten...tract/204/3/520 I hope that works. Already over at Brain Talk - where I posted this question as well- there have been a couple who have said that their tics get worse in cold and when by the oven - interesting!

Hi there, this might sound silly but I wonder if the reason many of our kids seem to get worse in the winter is simply because it is cold. I know this study is about mice but their histamine and seratonin was effected by the cold - I know those two neurotransmitters are huge issues for Hoyt and it has been really cold here. Any thoughts - am I nuts? http://ajplegacy.physiology.org/cgi/...ract/204/3/520 __________________ Giselle

Hi again, does anyone know what red bumps on one's bottom are a symptom of? It's not like a rash but just some scattered red bumps, almost like little pimples on the cheeks (of his bottom). I used to get these as a child too -is it yeast? He takes a bath every night and wears cotton undies. Thanks, Giselle

Hi there, does anyone know what neurotransmitters get used up more quickly when someone gets sick? Would it be seratonin as it is so prevalent in the gut and the gut is fighting the sickness so hence uses more? Thanks for any thoughts on this, Giselle

Kim, yes Hoyt is quite bad (when not on our regimen) - as bad as Emily when he's really going - and as far as courageous I don't know, I just thank God for red dye. That was what made me realize that if something could make him that bad then something could make him that good. I'll never forget when all this started it was the rolling eyes blinking business (boy am I ever homesick for when it was JUST that) and then we took him to Universal Studios to relax him (we originally thought this was nerves) and take his mind off his ever so stressful kindergarten. It worked until he ordered a strawberry soft serve ice cream cone. This is before I knew ANYTHING about nutrition and I remember thinking "wow, that's not the color of any earthly strawberry" It was neon RED!!!! Tasted wonderful and was eaten down to the last drip. Within fifteen minutes my son was reduced to what I would have thought was a seizure had I not already seen the eyes rolling and blinking - we actually have it on video tape as we wanted to be able to show it to the doctor we knew we had to bring him to. That very evening, through tears, I combed the web and found our wonderful Latitudes. One of the first threads I read was about how red dye made tics so much worse and the rest is history. I thank all of you wonderful people for helping Hoyt. He's ticcing a bit right now because he's had a horrible horrible (off for 10 days!) cold but is already almost back to "normal" - no vocal tics, no noticeable physical tics (except when super sleepy or sick) YEAH LATITUDES!!!!! Giselle

Hi, I live in California too and it is a state where you can decline vaccinations and still register for school. You have to sign a waiver (which they don't really tell you about as they'd rather you have them) but you DON'T have to - especially given you're child's history. I sign one at my son's school and for Cub Scouts and all is well. He hasn't had his vaccinations (after a certain point he was really reacting badly) and he is still in school - but I have to redo this each year. Giselle

Hi there, did anyone see the Miracle Workers episode last night about Emily Bressler and her TS? Just wanted to know what everyone thought. Her Mom mentioned that they "tried everything anyone suggested to them" but in her list of what they tried didn't say anything about diet/supplements/deficiencies etc. so I wonder. I was a little sad to see that they said her TS was the "most extreme case"- because then so is Hoyt's (when he's not on our regimen - very mild when he is). I'm happy it helped her but I wonder if 19 is too young still to know if you're going to out grow it? I was quite a late bloomer and don't think everything settled down until I was at least 23-24 - goodness I didn't even get boobs until I had a baby! Again, I'm not trying to be a party pooper it's just I feel all mixed up about it. Anyone else? Giselle

Hi Brenda, my son is only 8 and I didn't find him to be moody - he was just emotional - seemed any slightly sad thing would bring tears and detailed conversations that when on and on about how sad it was. He was very OCD about many things. We had his neurotransmitters tested (by NeuroScience) and found he was very low in dopamine, seratonin, and epinephrine but super high in norepinephrine, GABA, and histamine. We supplemented accordingly (all done through his DAN and Environmental Docs). His OCD (and over-emotional tendencies) went away as did most all of his tics as they were OCD in nature (he had to get them "just right"). It was amazing. He seemed to level out. He still gets sad, angry, happy, elated - but it all seems more "appropriate" for lack of a better word. We also did many other things before the neurotransmitter test. We had tested for yeast (he had it), heavy metals (high lead), allergies (gluten, casein, soy, corn, etc), deficencies (B6, magnesium, his zinc to copper ratio was out of whack) and as a result either eliminated foods, added vitamins, worked on his yeast. One of the first things we tried though was Bonnie's vitamins. At first he seemed to do well on them, then he did horribly on them and actually got way worse. We found out why. He has a real difficulty synthesizing and breaking down B6 (hence his deficiency) and we had to give him P5P which is basically B6 but is one more step broken down for him. Also fish oils are horrible for him because of his high histamine - apparently the choline contraindicts high histamine (makes it worse). Instead he takes Flax Oil which works fine. I guess each child is unique and how they come to TS is unique - like a puzzle. Our job is to find all the pieces (or as best we can) to help their bodies not be strained - which helps with their TS. Good luck, Giselle

I'm sorry, I just have to vent a bit. There are several families at my son's school who have issues that from all my reading here and over at Brain Talk could be changed for the positive with diet - other things too of course but diet for starters. Specifically ADD/ADHD and OCD. One Mom who has known about my journey with Hoyt really took a lot to heart and has had her son and daughter tested and is taking the necessary steps, diet wise, to address their allergies (they found gluten, and 22 other foods!). Then there are the others who have heard about Hoyt (it's a tiny school, only 200 kids in K-8) and want info and just glaze over about perhaps eliminating gluten and casein. I swear most people would rather change their religion than change their diet! I was calling one of these Moms to ask her about Cub Scouts and discovered she was on a trip to UCLA to get an MRI for her eldest son because his medicine wasn't helping his ADD and mood swings. I told her to look into his allergies (he's got horrible shiners) and she told me "it can't be food, it just can't". Do you know where she was? She had stopped at Jack in the Box and was ordering when I called! He was ordering a large strawberry shake with his dinner. I feel terrible for that kid - he's having a horrific time in school concentrating and getting his homework done, awful time at home with tempestuous moodiness and those shiners! She told me "we can't go without wheat, he loves bread and pasta too much". So frustrating! Thanks for listening.

Bumping!!! Like manna from the god's! Giselle