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lurker

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  1. Donna, I wish I had more time to respond now, but wanted to quickly mention that someone around here (can't remember who) gives her kid a protein snack every three hours to keep ocd/tics at bay. Also wanted to mention that you should look for Doris Rapp's books on food allergy in kids. (I think that is her name; someone here will be able to correct me if it is not.) She is an allergist and she made many of the observations you have while allergy testing kids. I thought of her book immediately because she mentions giving the kid sodium bicarbonate or Alka Seltzer Gold during the testing if she evokes a strong allergic response. Apparently, it inhibits or limits the reaction. The baking soda craving sounds like it may be driven by instinct. I would suggest trying the Alka Seltzer Gold instead of the baking soda next time, but if you stick with baking soda, PLEASE buy one of the aluminum-free brands. Baking soda has the absolute highest concentration of aluminum you will find on the grocery store shelves. Tami
  2. Faith, I'm doing a "drive by" because I am really busy now, but I wanted to respond to you and Bmom. I will respond at length later. Anyway, you may want to consider getting a "glare guard" to put in front of your screen when he resumes the Wii (whatever that is) next week. They are screens that you put in front of screens to shield the glare/flicker and reduce eye fatigue. They used to be commercially available at electronics outlets before they started pushing the new lcd and plasmas. You could probably get a great deal on ebay and have it by the end of no-screens week! Also (I'm assuming it cables up to a tv?) you should use a small tv. in a well lit room and sit at the farthest practical distance. Tami
  3. Does anyone know if the OCD or ADD come later in non-PANDAS tic disorders too, or are they usually observable at onset?
  4. Bonnie, Clearly its not school! Since it happens in that time-range look for tips for afternoon fatigue. I can't imagine getting a child his age to take a half hour nap at 3:30, but maybe 20 minutes on a trampoline would accomplish the same thing -- reboot his system. My son has only been ticcing at bedtime (book time). I assume it is because it requires complete inactivity, and his hyperkinetic little body is having trouble settling down and needs an outlet. I have experimented with gum (thanks, Judy) and crushed ice and a superhero type toy to diddle with while I'm reading --all seem to provide enough distraction. Maybe your guy is triggered when he transitions into relaxation mode? C.P., Adding to your theory, infants go through that colicky time in the early evening that my pediatrician called the "witching hour." Both my kids did that between 5:00 and 7:00. Tami
  5. Bonnie, Could there be some stress from school? I actually addressed this in your tics/pool/diet thread, and I don't know how to move it or copy it here. Tami
  6. Could this possibly be stress-triggered? I ask because tics seem to appear/be more pronounced in Sept/Oct (beginning of school year) and April/May. The beginning of the school year is understandably stressful for small children -- new teacher, new routine, new kids. Everyone seems to look to allergies/chlorine in the springtime. These are certainly huge issues, but I think that many times no single trigger can be found because they are cumulative --multiple stresses from different sources. Anyway, here is my point: Maybe its "spring fever." My first-grader, who does not have tics, is experiencing quite a lot of school-related stress. She has been having more homework (including double-digit addition and subtraction IN FIRST GRADE), in preparation for two weeks of mandatory standardized testing, which began last week. It seems as if the end of the school year might be every bit as stressful as the beginning. Our kids are expected to learn so much so young now. I swear I ate paste, played in the sand, and took a nap on a little mat when I was her age.
  7. Jenny and Caryn, I bought an additional toaster so I could segregate. My toaster was the kind that, when you push it down, the sides move in and clamp the toast in place. I could see that there were always crumbs on it. Also, you can get a new toaster for $10. If you feel the need to have separate breadmakers (I do not), I would go to the website or call and try to order just an additional pan and paddle, not a whole oven. Tami
  8. MomtoDylan, My friend's daughter had a very similar one. I saw it for the first time when she was about six months old. We were at a duck park and she got really excited. She is seven and a half now. She has seen a specialist, who diagnosed it as a stereotypie. He said that it is very typical of children with autism, but is seen in typical children as well, although rarely. She is bright and sociable and has no other issues. His prognosis was that by about the age of ten, she would have the ability to control it. I can already see that she is aware when she does it and is able to stop herself. Anyway, I'm not suggesting that your child is misdiagnosed ("tic," "stereotypie," "habit," "lampshade" -- they are all just words). I just wanted to share that because its so similar and the prognosis is comforting. Can he be distracted from it? Could you ward it off by offering a high five when he gets excited about something? Does he do it during nervous anticipation or just excitement? I would suggest looking into fish oil as a first step. It's a brain food and the Western diet is really deficient in it.
  9. Ilovedogs, I'm no expert, but you might want to Google generalized anxiety disorder. Your last description sounds more like this to me. I think it is a milder situation where you worry for longer than normal periods of time over things that don't really warrant it, but don't exhibit any of the ritualistic or quantifying behaviors seen in OCD. Tami
  10. My son does not have PANDAS. He is very light sensitive. In the past, he will have been tic free for some time, and then a day at the beach or long car ride will set him off. I'm still trying to connect the dots. I have been looking at information on photosensitive epilepsy. Apparently, in this case, the light flicker is too intense and causes all the neurons to fire at once instead of in their intended order, creating the seizure. I figured if it can set off a seizure, why can't it set off tics? Maybe my kid can diffuse the influx better so he just suffers some aftershocks instead of a full-blown seizure. They have tested different things in clinical trials (drugs, sunglasses, avoidance techniques). It appears that POLARIZED sunglasses work quite well as they cut the glare, or flicker. Flicker is not just from screens, it can be from moving water, watching out car windows, sunlight filtering through blowing trees . . . Changing to LCD or plasma monitors and tv seems to be a good idea. Sitting 9 to 10 feet from tv so that your peripheral vision can take in more of the room helps too. Also sitting at a slight angle, not directly in front of the tv, and never in a dark room. Cartoons are much worse than regular tv, and never fastforward or rewind while watching as it intersperses intense horizontal lines of light in between picture. They actually instruct people with this form of epilepsy that if they approach the tv to change channels or are in proximity of an ambulance or other flashing lights that they should cover one eye with their hand. (Oh, I almost forgot -- disco balls are out! On the bright side, they are much easier to avoid than strep or gluten .) Tami
  11. Debbie, A nice middle-of-the-road approach might be to start making some easy changes now in case you have to go there later. The extreme GF diet is initially very difficult and requires constant vigilance. If you could start by replacing wheat pasta with rice pasta (spagetti, linguini, lasagna noodles, fusilli, and ziti are available at Whole Foods) and/or buy frozen pizzas with wheat-free crusts (Whole Foods or Trader Joe's) and/or change your bread to a wheat-free bread, you will have eliminated 90% of his intake. It is when you are required to reduce that last 10% that makes being gluten free so difficult.
  12. Wow, Judy, If I may, I would like to recommend a gum -- Xylachew and Xlear gum both are made from xylitol, which is an antibacterial, antiviral, antifungal. It is gluten free, and does not contain colors, preservatives or sugars. Try Whole Foods, near the checkout. Congratulations. Please keep us updated. Tami
  13. Tom's mom, That environment does seem pretty benign. So far you've got excitement and lemonaid. The only things I can think of to add as slight possibilities are overheating and roadtrips. Overheating is a somewhat common trigger, and several people here have mentioned backseat ticcers.
  14. Tom's mom, What was the nature of the getaway? amusement park? lake? camping? animals? Knowing as much as possible about the environment will help us with potential triggers. So far all that has been discussed is possible dietary triggers. Faith, Now that you have dragged husbands into this, I will offer mine up: I am certain that my son is triggered by light sensitivity. My husband was not so sure. After I explained to him that this would neccesitate upgrading our televisions to plasma, he apparently decided that the boy is so light sensitive that the computer monitors will need to be replaced as well -- even the one in his office!
  15. Myrose, Welcome back. I missed you. Tami
  16. Debbie, It's great that he has only low sensitivities. Some people remove all reactive foods. I would at least reduce them and be sure not to combine them on any given day. I think high 3-oxoglutaric is a yeast indicator. Which lab did you use? Regarding b-12, were you supplementing at the time of blood or urine testing or had you discontinued for several days prior? The last items are benificial bacteria. I think its safe to say your doc will recommend probiotics and vitamin D. Cod liver oil is a great source of A and D. Tami
  17. Valerie, I looked at IGa briefly. It appears that a complete lack of IGa is relatively common in caucasians. It is the immune factor secreted from mucous membrane (saliva, nasal, etc.). Based on that my first recommendation would be to regularly use gargles (If that is not a word, it should be ) and nasal spray. Ironically, we just talked about it in another thread. A company called Xlear markets products containing Xylitol and grapefruit seed extract (These are excellent antifungal/antiviral/antibacterial agents). My son's pediatrician put him on their nasal spray for some slight (she thought allergic) nasal inflammation. I would definitely try to protect all of his orifices with antibacterial, antiviral products since his body is not manufacturing enough on its own. (Yes, I know how bad that sounds, but there was really no other way to put it!) As far as causing tics, I would assume he is more prone to viral and bacterial infection. It is widely assumed that immune dysfunction plays some part in the onset of tic disorders as many kids acquire them after infections, viruses, and vaccines. Can you think of any specific illness that preceded his onset? or exacerbation? Also, have they checked for food allergies yet? That is IGg immunity. I noticed in my Googling (another good word) that some IAg deficient people have overactive or underactive IGg status. That, along with his gastro problems, would lead me to suspect food allergy. Tami
  18. Jenny, Jamba Juice. (I bought a Magic Bullet and make it at home.)
  19. Calicat, I would suspect the cold started the tics, not the zinc/sorbitol. I have made the observation before that my son tics "where he's feeling it." cold = throat clearing tic; swollen lymph nodes = neck tic; movie theater = blinking tic . . . Regarding the pickles, I think most of them use yellow dye and blue. Trader Joe's sells dye-free dill pickles. They are not as pretty as the others, but they taste great.
  20. Caryn, I guess I will have to use the stuff with carageenan in it after all! Is your son light sensitive too? I know he has experienced blinking in the past, but does he seem overly affected by direct sunlight or movie screens? (Just curious, and my Mundchausen by Internet has been activated with regard to retinal dopamine processing.) Thanks
  21. Betty, Don't ask me how I know this, but there are D2 receptors in the retina (part of eye that is light sensitive). It is my understanding that when stimulated, dopamine turnover is accellerated (locally). It is widely thought that increased dopamine or, more likely, extra-sensitive D2 receptors in specific areas are the catalyst for tics. There is no authoratative basis for that connection. I made it myself, so I could be way off. KIM, HELP! (I've been reading things I don't understand again!) Tami
  22. Betty, To my knowledge, Rice Dream WAS not gluten free, and then some was and some was not depending on its manufacturing facility (some labels said gluten free, some did not). Now it appears that it is all gluten free, and I have not seen a carton without the GF designation for a very long time. If you have always seen the GF on the carton, I am certain it is gluten free. Tami
  23. Colleen, My son's homeopathic pediatrician put him on Xlear nasal spray for some slight nasal inflammation. I had to go to their website to find a local retailer. They appear to have some great products that combine xylitol and grapefruit seed extract, including the nasal spray. They have gum and other products as well. I think they may have had a rinse or gargle product too. Just Google "Xlear." Hope this helps. Tami
  24. Patty and Bonnie, I think almost all orthodontic work begins with spacers. They are in for about a week. Your boys' reactions to the spacers should let you know if this type of dental work will affect their tics. I would suggest discussing your concerns with the orthodontist beforehand and working out a deal where you can opt out after the spacers and not be obligated. Maybe try a mouth guard from a sporting goods store, or buy a cheap over-the-counter teeth bleaching kit that has a dental tray or form in it. Tami
  25. Janene, According to "authorities," people do not tic while sleeping. According to other "authorities," many people with tic disorders do tic during sleep. I think the field is pretty evenly divided too; so it is probably an individual thing. Hope this gives you some comfort. And welcome. Tami
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