Claire

Hi Scouts, No time for a long post right now but here is a link with a study or two mentioned on tonsils. Hard to find which study though! http://www.neurotransmitter.net/pandas.html Anecdotally, I have heard mixed stories on that tonsil removal. Welcome to the board! I am sure others will have more info. Chemar in particular has supplements for her son's OCD that prevented him from needing meds. They may be worth investigating, but apparently you can't do both at once. For my son's lingering (much more minor though) fears after strep, we used an air filter and focused on mold elimination. Also melatonin (1/3 mg) at night solved his night fear issues--I feel it broke the cycle there. Intense fears are so sad, I have been there and I am sorry for you and your child. I encourage you to read other threads here, so many of us have found paths to help our children back to happier lives! Claire

efgh, Of all of our kids, your son seems to have the strongest reaction to TV. Really, that strong a reaction to the visual aspects of TV makes him having a reaction to computer likely, even if not directly noticeable. I would be very hesitant to have anyone make any formal diagnosis of him until you tried no computer for a week also. Please note that I am not suggesting that you take away computers, even for a week--I am just suggesting that you consider this aspect 'IF' you are thinking of going through some formal assessment and diagnosis for your son at the end of one year. Your son is one of the children I would worry about being misdiagnosed otherwise. I think of Heather and the peace of mind she says this knowledge gives her. This doesn't mean she doesn't let her son play computer anymore since the tics are minimal with some limits and her other health measures. By the way, reintroducing computer for my son this past week, even on an LCD monitor is starting the arguments that we used to have (even before his tic reaction to computer). When his time limit is up, he is now playing a game with levels and randomness that make it very difficult for him to stop and he gets quite mad at me. Those games are just terrible. The randomness of taking away all your points or not finishing a level is just unhealthy for some kids. (He lost 2 game days of progress because I distracted him to give him his 1 minute warning). The characters move around and he must track and chase them--maybe that is a trigger for other neurological issues also. I am thinking of not allowing this game, but will give him another chance. He was mad for hours and he rarely gets mad anymore (he went through a stage there). I didn't realize it had that aspect--he has always had a hard time with those games, but does fine with others. I honestly think that no computer was easier, but that's life. Claire

Chemar, No, it is just water and electrolytes. They do make a slightly colored version with flavorings, but I am not training my son to want his water sweet! We used to have sucralose, but now occasionally use Stevia, but that it is--at not in our water! Jennifer, Thanks! I have been wondering what happened to you--So glad your son is doing well!! Really it is so good to hear. Funny, because I noticed a behavior difference when my son started milk again and you noticed it for wheat. I thought about your raw milk, but right now my son just decided he will actually allow soy milk in his granola. I do need to ask the immunologist about raw milk, since my son actually tested positive for it. Very interesting on the wheat, thanks. Funny how I look at it sooooooo differently than I used to. My mom got colitis, and I keep thinking it is a wheat or yeast issue now. But she isn't interested. And now she has rosacea (brand new) and they put her on antibiotics. It helped, she went off the antibiotics and it came back. I must figure that there is a better solution than antibiotics..........ugh! I will ask my son's doctor about FOS and check it out. Did it help? Claire

Congratulations Jeff! This is truly a community service. I just hope people more spread the word. I am glad that the article focused on more than tics. Thanks for doing your share. Many of us hesitate to go public... Interesting, this food etc...allergy blood test form I got actually had a test for artificial colors! This is for me not my son, but I will check it out. Claire

Heather, It is remarkable the impact of screens--I just know that there are others out there for whom it is also so binary. After you know the trigger, it does give piece of mind, doesn't it? Knowledge is power! I think people sometimes think that I want everyone to just cut out screens, but really I am just encouraging people to find out just how much impact they have (for those who even have an impact). Because once you understand the trigger, as a parent, you still have the COMPLETE ability to manage the trade-offs between happiness/emotional health and neurological health based on your best parental instincts and the clear guidance from your child. Like Jeff and the artificial colors--occasionally his kids get junk food (e.g. holidays). We went a year with some screens as we tried to find a balance and manage his 'happiness'--but in his case he got more sensitive and by 9 1/2 we had to remove all but the LCD monitor completely (maybe it is the age 10 peak thing?). But it was summer time and that helped a lot, as you have noted bad weather doesn't help. Did you ever try to have him watching a DVD movie on your LCD monitor to see if that reduced his reaction at all? My son watched 2 movies this weekend on our 15" LCD monitor (from across a well lit room, etc...) and even played computer (static game) on it and he had no reaction. Of course, after months with no computer games (his choice, since I always allowed 20 minutes every other day), my son is 'in the computer game mood' right now. Next week (after he takes this big math test he has been preparing for), I promised him we could try 30 minutes a day-everyday-of computer, plus 2 movies on the weekend to see what he can now tolerate with the LCD monitor. Of course he knows that should he exhibit symptoms, I will stop all for a week, then try again, with maybe longer times but still every other day, or shorter times daily. He is pretty excited. I am glad you son is doing well with the NDF! I need to find out more about Threelac before my son's next doctor visit. As you know my son too is coming of yeast/heavy metal detox, and I am sure it is helping--he gets retested next month. I really like that the food restrictions are less with Threelac. I want him to take the test first to see if the Capryllic Acid worked. But I may start on the Threelac sooner--I need to do the research for my doctor on it though. Claire

Clare, Have you ever tried Melatonin? It is great for sleep. My son and I both use it, and my brother and his son. However, I have no idea about going off meds, and though Melatonin is an over the counter supplement, I would talk to your doctor or an alternative physician. Sleep is so critical! --Claire (same name different spellings. Plus AusClare makes 3 of us! and 2 Jennifers...)

Heather, I saw your other post on TV. Finding that right balance of trigger control and emotional happiness is not easy is it? I am going through it with my son on carbs vs protein (his balance should be shifted due to the yeast), and I am leaving him a lot of control there--e.g. he still basically eats carbs (potatoes, rice, granola). His protein is power bars, cheese and 2x weekly he has chicken. The good news is I finally found a soy milk he will have with this granola--at least a little protein there. Claire

efgh, Mother's Day is my own peak for allergies every year and I often get eye rubbing myself from them. Like Chemar, I have my own solution, which is either rinsing my face with warm water or putting a warm wet washcloth over my eyes. I think the moisture is soothing--Chamomille likely has added benefits. Claire

http://www.mercola.com/2002/may/8/distilled_water.htm Mercola is down on distilled Water. Interesting, because my son's DAN doctor says he supplements distilled water with minerals--which fits Mercola's comments here. We now use reverse osmosis now and/or 'glacier' bottled water. Questions: 1. My son likes the SmartWater electrolyte water. (No sugar or artif. colors like Gatorade). Should this just be drunk when it is a hot day or he is hiking/sweating? Otherwise the electrolytes are too much? 2. Feingold vs Whole Foods. If you are doing the Feingold diet, other than worrying about salycites, if you shop at Whole Foods only, do the Feingold lists become unnecessary? E.g. Is Wholefoods all 'Feingold friendly foods'? Like Feingold, Whole Foods still has things with corn syrup in it. Due to corn, we stay away. I am reading more on yeast and FYI having dairy/wheat/egg/corn allergies with yeast sounds quite common. Claire

Hi Jennifer, You have a lot to deal with there, with all the medications. In addition to reading the threads on this site and asking questions, I suggest that if you have insurance and can afford it, you look at the doctor list at the top of the site. These doctors will help you look for underlying health issues or food/environmental triggers that may be aggravating your son's condition. I don't know much about bi-polar, but there are a spectrum of neurological issues such as ADD/ADHD, tics, ocd etc.. that have been helped considerably through these methods. Are you saying your son was diagnosed with ADD/bipolar at age 3? Was he on repeated anti-biotics as a child (e.g. ear infections)? Claire

efgh You might consider taking him to an opthamologist trained to assess visual tracking. This sounds like a potential factor. It may not affect learning/reading but may be a stress on his system. When my son was ticcing from computer, playing piano and reading that music set him off. Jean commented on this too once. Claire ps You sound worried about the 'complex tic'. I am sorry for your worries there! Good luck.

Jeff, No one took offense! The terminology is tricky--thus my term uncontrollable vs involuntary. It can sound like seizures otherwise. You are doing well to try to clarify. Maybe urges to tic that are uncontrollable in intensity??? Claire

Hi Chemar and Jean, Thanks! I will check out inositol, and investigate kynureine. He already takes magnesium--but he wasn't taking it when he had the fears. efgh re Caprylic Acid, I just give him 2/3's the dosage on the bottle. But some bottles are soooo different in amounts. I am reading a ton and can't find anything on dosages. Also, one thing I read said capryllic acid and over the counter remedies are good for yeast in the gastro. tract, but not for systemic yeast or a long standing condition. Not sure how you tell the difference. I will do more research over time and let you know if I ever find out more. Claire ps Well Chemar, as for 'colonic irrigation' I just can't do it to my son (he resists even pills, and would never go for it!), but if needed, I will try it out, oh dear.

After more thought (even before reading Heather's post), I think "Uncontrollable" is the right word for many if not most ....as opposed to "Involuntary". Claire

Hi Jeff, I hope there is a link to the article, it is good to hear that you are spreading the word. I agree sensations are uncontrollable, but the tics can be controlled for some--at least temporarily. For some, I don't think they actually can contol their urge to tic--it is too strong. Especially when their mind is on something else, or the trigger is unusually strong, they are not likely even consciously aware that they are doing it. When my son had tics, he could only control it for a very very short time. It may be the difference for an adult, or for severity of the urge. Claire

Shawn, Since you mentioned smelly feet... Chemar posted a link here from an active poster on another thread on Pyrollia. "FJ" says that smelly feet are a key symptom of this 'disease' that is basically 'cured' by zinc/b6/magnesium I think. You should ask FJ on the other board. http://brain.hastypastry.net/forums/showth...86040#post86040 It turns out there is this great at-home urine test you can mail in that is $34 plus shipping. You don't need a doctor to sign anything. You just need to go vitamin-free for 3 days first. Again, your smelly feet comment makes you a candidate--you could be one of the lucky ones for whom this simple solution works, as it did for FJ's son. I don't know how many others have tried this with success, since it is a theory of hers and I don't usually read that board, but the cost is really not much compared to some tests. You must freeze the urine before shipping it via Airborne. I just sent away for a kit myself. As for the bright lights, light sensitivity can be an issue with high mercury levels Sorry I don't have the link for that. (or a Riboflavin deficiency, among other things) Mercury detox is discussed here, and can be done with antioxidants but generally best under a doctor's guidance after being tested first. We have threads on that, Heather did a lot on that one, please check them out. My son has high mercury levels and some light sensitivity and is sensitive to the flicker of CRT computer monitors--they actually trigger tics. Do you know what your refresh rate is set at? Try to move it as high as possible--it takes only a minute and can't hurt. If this is an issue, an LCD monitor is ideal. But they aren't cheap so I would change the refresh rate first and see if it helps any. Go to the desktop, right click on properties and set it higher. Let me know what the highest rate is once it is set. Some only go to 75, which is better than 60hz, but 85 is better and 95+ is ideal. Try to ask yourself if you have ever gone a full week without computer or TV and if you noticed any improvement. That is about how long it takes to really get your nervous system back in order. I know that can be impossible for a college student to do, but vacations do occur. I wouldn't mention the TV other than that you mentioned the light sensitivity. There are other things to check of course, and without an alternative doctor, again, please read the threads and see what strikes you. One last thing: do you crave carbohydrates, sweets and/or breads? Claire

Welcome Shawn We have had a lot of new visitors in this past week, and you can find that information on various threads, including the one initiated by 7Roses. More than anything, this is very complex, and though many here have had success, it isn't so much one formula as a process, so no simple response. So I encourage you to also read many many threads, or review the alternative doctor link at the top of the site that Sheila Rogers, site editor posted. Good luck and feel free to ask questions as you read... Claire

Thanks a million Chemar! I will check these out. You are right that the fears could have been other things too, it is just so complicated sometimes. Claire

Hi Julie, Sheila Rogers, the editor of this site, has posted links to types of doctors at the top. On these lists are MD's and Naturopaths, and other. These aren't the only lists, but a good starting point. http://www.latitudes.org/forums/index.php?...st=0entry3404 Claire

Chemar or anyone else with experience with OCD symptoms and supplements--- Does 5HTP help with compulsions or obsessions or both? I tried 5HTP 2 times with my son when he had fears during strep and it really wired him to the point of freaking both of us out. Is there something else that you recommend for the obsessions part. I really want to have it on hand should that ever happen again, it was just horrible for him. I will of course investigate what you recommend, but your guidance would be greatly appreciated to help me get started. More the obsession part than anxiety part. Thanks, Claire

Heather, Jennifer, Phyl, Chemar, Ronnas and my son's all have had issues with yeast, and all have seen improvement when the yeast was treated. Thus my reinforced presumption in assuming that yeast is a likely factor for aggravating tics. Certainly the DAN doctors test for it with Autism spectrum disorders, including ADHD, Autism, Aspergers, For Heather, Jennifer, Chemar and me, our children had heavy metal issues, and I just read that mercury suppresses the immune system and makes yeast infections more likely. Jennifer had this down months ago when she said: you gotta rebuild the immune system. From here come food sensitivities also. Okay, my cousin's doctor (she used to have chronic fatigue) said there is an at-home yeast test. I have NO idea of the reliability, and this may be completely BOGUS, but it is easy to do. Don't ask me more on this one, and don't hold me accountable for it. I hesitated even posting it, but maybe over time we will see if it is worthwhile SALIVA TEST First thing in the morning, before drinking water, spit (a really big one) into a glass of water. Saliva floats --no yeast Saliva floats, but 'stringers' start dripping down in the water --yeast Saliva sinks --worst yeast. We just did it this am and my son and husband's both floated (I mentioned the other day that I thought my son's yeast was much better, based on no more cravings and his concentration at school is back to being good--in time for the standardized tests). Mine had stringers, and we know from testing that my yeast is high. One data point doesn't prove anything, and I don't know the doctor. But maybe if your kid has stringers, you might consider further investigation. Claire

Susanna, The bottom line is that when a child has strep, especially one with tics, they are considered 'at risk' for PANDAS and need to be treated. I believe that any child with strep should be treated (this is the norm) though one practioner disagreed with me, saying that it would go away on its own and only a percentage develop complications'. (e.g. rheumatic fever, etc...). I was shocked to hear that they were willing to play the odds game. My son got fears with strep (3 different times) and the antibiotics cleared them. However, I am still convinced that multiple rounds of antibiotics causes issues with yeast, and problems associated with that. Claire

Theoretically, if it were pandas, the symptom can improve as the strep goes away. Sometimes it takes 4-5 days. What antibiotic are you using? My son wasn't responsive to one they gave him, in spite of claims that strep doesn't acquire resistance. But PANDAS symptoms don't always disappear with treatment. The more often they have strep and the longer it goes untreated, the more likely the symptoms stay. Even so, there is still hope for the antibiotics, and great hope for other methods should the antibiotics alone not work. The arm rashes are definitely worth asking your doctor about. Maybe a reaction to the antibiotic. However yeast can cause rashes too, and perhaps the antibiotics triggered yeast issues in spite of your probiotic use. Too hard to tell of course. I am sorry you are having a tough time right now! I remembering worrying while we figured out the cause and resolved our son's tics. It was a tough time. If you stick with this, you will help your child! Claire

mopower, tics are muscle movements that you feel compelled to do, such as blink an eye extra hard or flex your jaw. If you will go to the tics and tourettes board here, it is much more active and you are more likely to find answers. Most no longer take drugs or have their kids take drugs such as ssri's, but find natural methods to help. Everything you are talking about with the immune system is addressed, and most of us who have been doing this for months or longer have found relief to varying degrees. http://www.latitudes.org/forums/index.php?showforum=1 Good luck, Claire

I am bumping this for newcomers. The case study that Chemar posted on the improvement of OCD/tics with correction of yeast imbalance is compelling. Especially for those kids that crave carbs and bread, I consider this worth investigating. The RAST test and stool tests for yeast showed negative for both my son and me. So I recommend the Great Plains urine test. 913-341-8949. On my invoice, the cost for their "Organic acids test" which showed "elevated yeast/fungal metabolites indication a yeast/fungal overgrowth of the gastrointestinal tract" was $127. I am reading a bunch on yeast now that I have it as well as my son. Unfortunately, it involves a change of diet. I am trying to sort it all out. I have bought 4 books on it now. I want to investigate Heather's recommendation on Threelac, since she said it requires less of a diet change. Some non-prescription supplements for it are: Capryllic acid, P-au d'arco (anti-fungal), aged garlic (garlic is okay, but can create body odor), and even echinacea. Plus probiotics. No one states how many mg's of each though, so I still read labels at the store. The capryllic acid bottles vary incredibly though! I am reading again that so much comes back to the immune system, and I remember Jennifer crystallizing this concept for me many months ago. My gut says that my son's yeast is much much better and even normal again. I hope I am right, I will find out in June when we retest him. Claire