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lurker

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  1. Hi, Lori, Welcome. I would suggest Epsom salt baths and/or Natural Calm (magnesium citrate) and/or melatonin as alternatives to Clonidine for a bedtime aid. You may find them equally effective without the risk of Clonidine's side effects. Read as much as you can as fast as you can and ask as often as you like. This place is frequented by some of the best friend/perfect strangers you will ever meet. If I may ask, do you have genetic family history, or did his onset at three coincide with his vaccination schedule, or a viral or bacterial infection? Don't feel bashfull about your distrust of Western medicine, it is somewhat common around here. When I asked my ped what I could do about my son's tic disorder, he told me, "start drinking." In his defense, it wasn't bad advice . Regarding the "leg pain" has or is your son having a growth spurt? I do recall my son complaining about left lower leg pain in the first week of his onset of tics, which was approximately 4 days after his DTaP vaccination. LEG PAIN, ANYONE? Aside from that, various sources have tenuously connected Tourette's or tic disorders to restless leg syndrome. Again, welcome, Tami
  2. Jenny, Just a thought: When it comes time to enroll her for school, go back to the neurologist and say, "You're right. There is a fine line between tic disorders. Unfortunately, the school district only recognises one. And she won't get the accomodations she needs if it is called a generic "tic disorder."
  3. Jenny, Your post got me thinking. "Special needs" is as encompassing as the term "handicapped." Both paraplegia and a broken ankle are considered handicaps and will get you special accomodations, but they are not even in the same zip code as far as impairment goes. It is a shame that accomodations can't be made without a label. Tami
  4. Mack5mom, This is probably a really stupid question, but did they test for and rule out Epstein-Bar virus? It was the first thing that came to my mind based on those symptoms. [Edit] Nevermind. I looked it up, and her white blood cell count would have escalated instead of dropping.
  5. Carolyn, NAC is currently being investigated in a US clinical trial for its effectiveness in the treatment of OCD! I'll look for more info regarding the specific trials and publication dates. On a side note, it is an immunomodulator as well, and is suspected of reducing inflammation in cystic fibrosis patients. Tami
  6. Cheri, I know product endorsement is not attractive within a forum, but secrets like iherb were not meant to be kept. I just noticed your reference to it last night and went to their site. I saved so much money. Their prices were half of what I have been paying for the exact same products. The other site you mentioned before Easter, Natural Candy Store, saved Easter at my house. Do you have any other recommendations? Thank you, Tami
  7. Cheri, I am so fascinated by your salacylate question. (It activated my "Mundchausen by Internet".) After a quick glance it appears the theory behind salacylate intolerance is that it CAUSES INFLAMMATION in those who cannot tolerate it. However, as you said salacylate is a famous ANTI-INFLAMMATORY. We may just have to accept this like a typical Benadryl warning: "May cause drowsiness in some; may cause sleeplessness in others." Also, if memory serves me, it is prossessed through the PST pathway, so it could be a matter of high sulfation/low sulfation or under/over methylation -- concepts which I still cannot understand. Bmom, I have never heard of HBOT, but I'll google it. Thanks. Tami
  8. Tracey, I don't have any real answers for you, BUT my gut feeling is don't go "cold turkey." If you are going to discontinue -- and I'm not suggesting you don't -- I would do it slowly, very s-l-o-w-l-y, like pour out a tiny bit of powder from a capsule or nip off the end of a pill every couple of days until you get to ground zero. Stopping abruptly might jolt his system, and I believe all our kids have very sensitive systems.
  9. Cheri, I will look into the salacylate thing, but my short guess would be allergic response and equate it to penecillin which is a known killer of bacteria, but not tolerated by all.
  10. Kim, This is so far over my head, but wouldn't this indicate that N-acetylglucosamine, via branching activity, would be beneficial in both cases, whether strep related or not? I have done so much research and I am firmly convinced that no matter how a tic disorder is initiated (strep, allergy, vaccine, nutritional deficiency, errant genes, virus ...), we all end up with a disregulated immune system that cannot calm down (chronic inflammation). I don't mean to upset anyone, but IN MY OPINION, I think we are all dealing with the same thing. There just seems to be a difference in the proverbial "straw that broke the camel's back." Even in clear-cut cases of PANDAS, where there is no question that strep initiated the tics in a dramatic way and needs to be avoided, some of these kids appear to be set off by a virus or red dye and other things that are not strep related. I think we should all be looking into ways to down-regulate or modulate the immune system and reduce inflammation. Just from looking at the tic triggers checklist, I can see that most items are inflammatory: artificial dyes and preservatives = inflammatory; chlorine = inflammatory; pollens and molds (if you are allergic) = inflammatory; wheat/dairy/corn = inflammatory; stress = inflammatory. Also, the conventional drugs that work for some people -- many are anti-inflammatory (blood pressure medications). Azithromycin (sp?) = anti-inflammatory. Removal of dietary items provoking antibody response = anti-inflammatory. Omega 3 oil is the only non-pharmaceutical anti-inflammatory that seems to appear regularly in research with acknowledged benefit. We need to find more. I can't imagine there is or ever will be a lot of grant money for non-pharmaceuticals as there is not enough profit. Any suggestions or experience with natural anti-inflammatories? (Sorry for the rant. I'm a shut-in today with two sick kids.) Tami
  11. I don't have an explanation. I hoped I would. I have a theory that my kid tics where his stress points are. For example, over-tired, too much tv = blinking; swollen lymph nodes = neck tic; cold = throat clearing tic. If her first tic had anything to do with what Nasonex treats (either a sniffing or blinking or throat clearing tic) I would have assumed it removed the stress or sensitivity causing the tic to emerge in that area. But she seems to have very stable tics, whereas my son seems to develop a new tic specific to where he needs relief. He had a cold several weeks ago. I thought he developed a coughing tic. Turns out it was pneumonia. Bad Mommy! Have a good night, My Rose.
  12. My Rose, Sorry about your week. My guy has pneumonia so I'm having a long week too. What was the first tic that went away on Nasonex? What is the current tic that isn't going away? Tami
  13. My Rose, The "rare" side effect you mentioned made me wonder if the adverse reaction reporting for drugs is similar to VAERS (vaccine reaction). I'll bet its even worse. I would be willing to bet your neuro didn't report the reaction to the manufacturer or an agency, or inform you as to how it is done. In business and in politics they use "multiples" to determine constituent/customer dissatisfaction. If a congressman or corporation receives so many complaints, they know that there is a number they can multiply the amount of complaints by to get the real number of people who are similarly disgruntled but did not write. I imagine the multiple for side effects is really high and that no one really cares what it is.
  14. Jas, Sorry I put your name in front of that paragraph. It wasn't really meant for you. You made it pretty clear that you were never going to medicate. I only tossed that in at the end for anybody else who reads it, maybe even years from now. (I think it saves Cheri time ) I'll edit. Tami
  15. Clonidine has some anti-inflammatory properties. I saw a study involving mice. Systemic inflammation can be a result of food intollerance, poor nutrition, infection -- things that can be controlled to some extent by diet and nutrition. Interesting fact: In the study the inflammation was induced by injection with carrageenan. It is commonly used in dairy products, ice cream, some rice milk. Cheri has mentioned it as a trigger. Poor little mice. As far as clonidine goes, even if it works, I don't think the possible side effects are worth it. You may trade in some tics and mild OCD for a more serious movement disorder (TD) and psychosis. Tami
  16. Congratulations, Carolyn. You must feel great knowing it is out of your body. Could you give us relatively new folks more details? How often did you chelate? What metals were targeted? How did it feel? Were there exacerbations or just improvements? Of particular interest to me, what agent was used for aluminum? I am glad to know you feel it helped. I'll bet you continue to improve as your body adjusts to life without metal overload. Thank you, Tami
  17. Cheri, You have mentioned teething tics before. Could you indulge me? I am working on a theory here. I have read about premonitory urges, the sensation or feeling somewhere that makes one tic in a certain place. I have heard the clearcut sensation-urge thing develops around the age of 10 and that younger kids can't really distinguish an urge. Anyway, I'm thinking it is sort of a chicken-egg thing. I have noticed with my son, he will develop an eye tic if he has been watching too much tv/too tired; develop a throat clearing tic in concert with a sore throat/cold; and most recently, he developed a neck tic when his lymph nodes became swollen. I got the swollen node (only one side for me) too, and noticed it created quite a bit of sensation (dull pain on movement/sensitivity) in my neck. It is like his tics emit from his stress points. Sometimes, I feel like I am plugging leaks in a sinking boat when I am addressing his tic triggers. If I put my finger in one hole, water just squirts out someplace else. Here's my question, can you recall the specific tics your son had when teething? Were they mouth, jaw, head tics? Or unrelated to the affected area? Thanks, Tami
  18. Kim, My theory is that if he did have strep, the adjuvant in the vaccine would not only do its job (cause an excessive immune response to chicken pox), but also to anything else circulating in the immune system. I have researched aluminum adjuvants fairly well, and what is known about them is that they heighten and enhance immune response for an extended period. They do not know exactly how this works but it does. And since they have been used for over 80 years they are safe. ( I paraphrased that last sentence, but no kidding that is the theory.) The other thing that science will concede is that if aluminum adjuvated vaccine is injected into the right arm, and another antigen is injected into the left leg, the adjuvant will kick up the response to both. This tells me that adjuvants are particularly dangerous when there is existing infection or autoimmunity. Having said that, I don't even know if aluminum hydroxide is in the Varicella vax. I would assume all vaccines have an adjuvant though. By the way, they are working on a new adjuvant, can't remember the name, but its approved for use on animals, and it promises to be much more reactive than aluminum. Tami
  19. Judy, I think I confused your grandson with somebody else in the previous post, but my point is he was given the vaccine in error. Pease mention this to your attorney. I think this may be the basis for your case. Tami
  20. Jas, I think there could be a million reasons for a tic disorder, but if we are talking genetics only, then there are a lot of genes in the body that are programmed to express at a certain time or when some unknown influence triggers them. For example, your daughter has not gone through puberty or menopause yet, but she has encoded genes that will express themselves at the appropriate times. Also, in the autism study that was mentioned regarding the mercury exposure, the vaccines before 7 months were correlated with tic disorders at 7 years. I would have to assume that it is a period of growth or development that triggers it. Another example, I went to a small school, but a handfull of girls had grey teeth. Their mothers took tetracyclene (sp?) during pregnancy, and the first clue anyone had that there were side effects was seven or eight years later when their children got permanent teeth. Diabetes is an example of a disease that is not usually evident until middle childhood. I hope this helps some. P.S. This got me wondering if my little man will be bald in 45 years!
  21. Tracey, TWO to THREE DAYS after vaccination. I have an overachiever .
  22. C.P., "I remember after being married for a few years (did not know he had TS) . . ." You have no idea how meaningful, hopeful, and inspirational that was for me. By the way, I live near "the Valley," so if my son were to develop a word tic like "um," "dude," or "like," no one would ever notice. Tami
  23. C.P., I feel your pain. Has he been sick recently? Could he be coming down with something? It seems like some of our kids consistently react right before showing symptoms of illness, some during, and some after. My son's tics had been gone for about a month. He cought something and still didn't tic (although he was somewhat sensitive). Then he started ticcing again (slight shaking of the head as in "no") and I noticed large swollen lymph nodes in his neck. Then I noticed a golf ball sized one in my neck, and my sister (I see her once a week) has them too. I guess what I'm saying is that three of us having it means it has to be a virus or bacteria, and it set him off again. Can you rule out a low grade infection? Tami
  24. WARNING: I am going to rant. I got a really strong sense of "Mommy blame" from this study. Even the language suggested it -- "maternal smoking" was repeatedly used instead of "fetal exposure." I know that ultimately they pointed to lack of oxygen, but seriously, previous generations of mothers smoked more and prenatal care is so superior now. This should indicate decreasing rates. It used to be thought that overbearing mothers caused kids to have tics (and autism). Now its mothers who smoke. I think that the link is genetic. "Overbearing" indicates OCD, not environmental influence, and some smokers are self-medicating for ADHD. My mother smoked, and I don't have tics. I have never smoked, and my son has them. When my mother started smoking, doctors were appearing in cigarette ads. Our local 50's Cafe has some of the old print ads on the walls. They say things like, "4 out of 5 doctors recommend . . . " One even features a former President of the United States. I can only imagine that in 40 years our children will read things like "Mothers who vaccinated their children . . ." and "Mothers who allowed their children to eat Cheetos and other synthetically colored preserved foods . . ." As for the PANDAS moms, I don't know how they will blame you, but I am confident that they will find a way.
  25. Carolyn, I haven't had time yet to follow your links. I really want to study this before I start asking you questions. But one thing jumped off the page and screamed at me: "Tylenol cripples the sulphation (detox) pathway." Pediatricians routinely recommend that you give babies Tylenol BEFORE vaccinations! Many parents give it to them after too. Also, I have an appointment with the naturopath next week.
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