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Sheila

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Everything posted by Sheila

  1. Hello and welcome, HateTS--(good name) First, congratulations on graduating from a very challenging engineering school--it's such a great field to be in. That should serve you very well. You've explained that you have had tics for many years and they ramped up recently while under a lot of stress and eating more junk food. It must be especially hard to deal with these increased tics while trying to interview for jobs. Re: magnesium, it helps many and it shouldn't take long to see improvement if it is going to make a difference--but I'd suggest you need to be doing other changes as well before considering getting off your meds (with doctor guidance for weaning). Magnesium is often just one of a number of supplements that might be needed to balance out. Are you up for making some additional changes to see if they help? Here are some ideas -- see what you think. You need to recognize that your nervous system is over active and you want to do everything you can to calm it down rather than risk aggravating it. 1) Starting right away, eliminate all foods that contain artificial flavors and colors--get used to reading labels if you don't already do that. Look for replacements as needed. i.e., like plain potato chips instead of sour cream and onion flavored. Generally, the less ingredients the better. Preservatives are good to avoid also. 2) Eat organic when possible. 2) Avoid sweets--sodas, pastries, other treats. And don't eat/drink items with artificial sweeteners--stevia is OK. Skip dried fruits and 100% (or sweetened) fruit juice in an effort to reduce sugars. 3) Reduce caffeine intake to 1 cup a day if you drink coffee (Do you?). 4) Start taking a multi-strain probiotic daily--can get this at natural food stores. 4) Don't use any scented personal products. You can find unscented substitutes on Amazon or Whole Foods type places. For example: Unscented after shave Apply the same principle to shampoos, facial cleansers, shower soaps, etc. Many with tic disorders are chemically sensitive--and in any event, the chemical scents are often harmful to everyone. 5) It's good to go natural in the home: no scented plug ins, avoid typical sprays, fabric softener, scented laundry detergent etc. Look for 7th Generation substitutes (they are easy to find and nontoxic). You can also look at our article Finding Triggers for Tics and Tourette's if you want to see lots of things that might aggravate tics. It mentions exposures that trigger tics in some people, certainly not everyone--and not everyone experiences all of these many items! You could look through the list, based on a survey, and see if you see anything jump out that might be related to your tics--something that you have suspected in the past that might have made them worse. Another time we can talk about food sensitivities (like the possible need to avoid or reduce dairy intake or other foods) and allergies. These can play a big role in tic disorders for some people. I hope that rather than feel overwhelmed with these ideas, you can see this as having the potential to reduce our tics and eventually get you off meds, we hope. It's a good idea to keep a journal and track what you are doing and any changes, up or down. Hope this is some help to you.
  2. Hi AHB900, I suggest you take Dr. Mullen's lead on this--yes, candida and parasites can certainly be the cause of tics. FYI different types of mold or other allergens like pollen can aggravate tics (mold need not always be toxic to cause a tic reaction). You mention exposures to these around the time of the relatively recent flare. Treating imbalances shown in the lab tests, as you have indicated, should be helpful as well. Can we assume you have ruled out a viral or bacterial infection, beyond the parasites? Also, I would not worry that you have caused any kind of permanent neurological damage related to the supplements you had been taking. I hope you will let us know how things go and what else you learn. Wishing you all the best with your efforts!
  3. Hi aja45, We are glad you wrote. Yes, throat clearing is also a tic and it can qualify as a vocal tic, the others you describe are called motor tics. It would seem that you do have a tic disorder. That's a general label for what you are experiencing. Do you want to share any other symptoms (physical/emotional) that you may have if you want to begin focusing on what might be causing these tics?
  4. Hi -- I have referred people to this clinic located in London. It is the only one listed in the UK on the American Academy of Environmental Medicine for referrals. http://breakspearmedical.com/ FAQ http://breakspearmedical.com/faqs/ Unfortunately I haven't heard back from those referred, with positive or negative feedback. I will check with someone else in the London area who may have an additional suggestion and get back to you.
  5. I read your latest letter and since it is now very clear that your son has a number of different allergies, it is important to zero in on those. When it comes to allergies, the most important factor of course is avoidance whenever possible. This article from the Asthma and Allergy Foundation of America has good information on what to do if someone is allergic to a pet and keeping it in the house, which seems to be your situation. Here I assume your doctor gave you ideas on controlling dust in the house? I know it might seem overwhelming to have different types of allergies to deal with, but at the same time it should be encouraging that this could be connected to his tics. One thing you haven't mentioned is diet. Did the allergist say about food allergy or intolerance?
  6. I spoke with someone who used to have a water treatment business, including for swimming pools. I hope this is some help in your decision making. She said: Baquacil is an alternative. However, it has a tendency to grow pink algae which is a pain to get rid of as well as expensive to treat. It also has a few other problems and the main complaint is the expense of Baquacil itself. Conversion of the pool back to chlorine is a bigger problem than converting the pool from chlorine to Baquacil. It is tho, a viable alternative. I prefer copper/silver ionizers, either in electrical low amperage probe form or cartridge form. This addition of copper/silver ion bactericides with the addition of pool grade hydrogen peroxide(27%) periodic shocking of the pool is my personal preferred method. The draw back to this process is some blue green staining can occur if excess copper/silver is introduced into the pool. Much is written on the web of the different chlorine-free processes but a word of caution: Chlorine-free salt generators really make chlorine in the pool. So it is actually NOT chlorine free. Many new products and improvements have been made since we sold our pool products division 8 years ago. Maybe someone on your Forum could interview a pool products company and report back if there are any other methods now.
  7. Hi LJsAdvocate, Agreed, the salt water pool is better than conventional treatment but the low level of chlorine produced could still bother some one who is very sensitive. I don't have the answer on Baquacil, but I know someone I can ask. I'll see if I can get in touch with her and get back to you.
  8. Giovanni, it would be good if you could get more information from a doctor who will treat whatever your problem is. Since you have been told it is worms, one possibility is pinworms which can cause the itching you describe. This article has some information on it. Cleveland clinic on pinworms. It also tells how the whole family can help with the problem. Does the itching get worse at night? Some report that is the case with pinworms. I don't know whether this is the issue you are having, but it seems you have had the problem for a few years (right?) and you really need a doctor to treat it. Whatever the problem is, it shouldn't go on this long. You must be very uncomfortable. Are you in a location where you can see a different doctor? Separate from the itching problem, do you have any other symptoms with your tics? Have you ever noticed if something makes them worse--like something you eat? Or on rainy days, etc?
  9. OK, Giovanni, that's good. If you get a chance please get back to us and let us know how you are doing.
  10. Thanks for writing back. Please see a doctor to find out what the cause of the itching might be. I know it must be embarrassing to talk to anyone about, but for example, two things that can cause the symptoms you are having are parasites or a candida (yeast) infection. Both of these can also play a role in tics. Maybe the itching is aggravating your entire system, also. It would be good to first focus on learning the cause of the itching and what can be done to give relief. In addition to the two issues above, there can be other causes for anal itching and it is important to see a doctor to rule other possibilities out. Is seeing a doctor for this something you can do?
  11. Hi Giovanni, Welcome to the Forums. I'm glad you wrote, but am so sorry to read about your difficulties. Where do you live? And over the years, have you ever been able to notice anything that made your tics worse? That would help give us some clue. Please write back, we will watch for a reply. Sheila
  12. Thank you for responding, mcturro. I just wanted to let you know that I am out of town and haven't had a chance to write. But I will soon!
  13. Hi mcturro, It's quite frustrating when doctors insist that allergies can't be involved with tics. They are following the lead they take from conventional medical sources. Unfortunately, the medical community in general, and the Tourette Syndrome Association (which recently changed its name to Tourette Association of America) in particular, has failed to look into this, despite many reports from physicians and the public that link the two, and research that points in that direction. An identical twin study supported the role of the environment in Tourette's many years ago, but unfortunately there has been a real failure of the medical community to explore this important issue. The long-standing message given to the public and physicians that TS is solely genetic is now giving way to more focus on environmental factors. But the progress is very slow. You've really been through a lot already, going from doc to doc and ruling out PANDAS/PANS. Now you need to find answers. We don't know what percentage of people have traditional allergies (like grass allergy, mold allergy, milk allergy) that are affecting tics, nor what percentage have sensitivities to a wide range of other agents that don't fall under the category of traditional allergens. Toxins also have the potential to affect tics. Your pediatrician might say the same thing about pesticides as he did about allergy just because he hasn't read a study about it. Yet it is such common sense that most pesticides function as neurotoxins and directly impact the nervous system with the potential to cause tics, tremors, seizures, and more. . Resourceful parents like you are left to forge a way on your own! Thankfully you have the motivation and open-mindedness to do so. Yes, thankfully some people appear to outgrow their Tourette's. Many people also outgrow traditional allergies (and food reactions, as Wombat pointed out). Yet at the same time, some have allergies that surface as adults after not being troubled previously, and some adults develop Tourette's for the first time in the their later years. As you would know, allergic response can depend in part on what part of the country one lives in at a particular time, whether someone moved from a clean house to a moldy house; there are so many factors that aren't on people's radar when they find that tics or allergies are getting better or worse. Hormones can play a role as well. One major exposure to a toxic substance can render a person hypersensitive to low levels of exposures.It can be very individualized, and not easy to sort out. Dr. Doris Rapp released an excellent book a few decades ago called Is This Your Child? which had a subtitle about discovering and treating unrecognized allergies in children. She was the first to widely promote the concept that children could be reacting in a negative manner--both in behavior and in academics--to foods and allergens/chemicals in the environment. Dr. Rapp included symptoms of Tourette syndrome in her findings. When parents--and doctors such as the two you went to--don't "recognize" that there is a potential for a connection to tics and allergies/toxins/foods, then they don't look for the connection nor do they ask families about any connections they may have observed on their own. And worse, they often discourage parents from looking for a link between tics and environmental exposures by telling them it is a waste of time. Meanwhile these doctors have no helpful answers to give when it comes to tics. We never say that everyone with tics or Tourette's has allergies. But we do know that for many people, there is an important connection that should be looked into--and that learning about this can be very helpful in treating the symptoms of Tourette's and avoiding exposures that can aggravate the symptoms. If there is no connection, then so be it. But if there is, learning of it is a real godsend. You could share these article summaries with your pediatrician since you said he likes to read. The first was a small study, the second was large. Association of Tourette syndrome and obsessive-compulsive disorder with allergic diseases in children and adolescents: a preliminary study RESULTS: While only one-fifth of the control subjects had allergic diseases, more than half of the children with TS and/or OCD had comorbid allergic diseases. Positive skin prick tests were greater in OCD patients compared to control subjects. There were no significant differences between the groups in terms of eosinophil counts or IgE levels. Among the allergic diseases, while allergic rhinitis was diagnosed at significantly higher rates in TS patients, eczema was significantly higher in OCD patients compared to control subject. CONCLUSIONS: This preliminary study shows an association between allergic diseases and TS and/or OCD. The results revealing differences in associations between types of allergic disease (rhinitis or eczema) and neuropsychiatric disorder (tic disorder or OCD) need to be investigated in further studies with higher numbers of participants, and immune markers should be examined. Here's another one: Correlation of Tourette syndrome and allergic disease: nationwide population-based case-control study. CONCLUSIONS: Our data showed significant correlation between allergic diseases and TS. Risk also increased with number of allergic comorbidities and with age. Further studies on the mechanism of neuroimmunology of TS are required. - - - - - - - Hang in there and please don't feel lost. (You can feel overwhelmed though, we all did in your situation ) And don't feel hopeless. With the right doctor you can move in different directions and find more answers. The professionals you have been to simply couldn't help you. But there is much help to be had. Do you want to tell us more about your child? .
  14. Well, Wombat -- Since you began with pizzas I thought I'd share this link. It's got 15 gluten-free pizzas. For dairy-free, people will need to substitute for the regular cheese. I haven't tried all these but there's quite an assortment of crusts! See here. Thanks for starting this thread! I'll keep an eye out for other recipies.
  15. I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding. A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member. Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages. What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page. We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all. Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues. We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.
  16. Hi -- the patches contain no medication of any kind, nor do they have any electrical/battery component. They are specially designed patches that the company explains on this page: http://treatnystagmus.com/faq.html They are considered harmless, without known side effects. I hope that helps!
  17. An online cognitive and behaivoral program (tichelper) is associated with Dr Doug Woods. It has a website http://www.tichelper.com but for the last several months has said "coming soon." So we don't know when it will be available to those who may be interested.
  18. Hi -- I had asked about the allergy drops, wondering if maybe they needed to be updated in strength (up or down) as sometimes that can be an issue over time. But you have described multiple testings over the years. Thank you. How is the food journal doing? Have you seen any connection with foods and symptoms? It's good that you had a few tic-free days when you had first written. That's always encouraging, because you know that your goal is to achieve that state once more, and that it can happen. How have things been since then?
  19. Hi Tmy5221, if you haven't found anyone to consult with by now, would you be interested in an online program? Sheila
  20. Hi and welcome to the Forums. I understand your need for a doctor rather than trying to figure things out for yourself. It's really ideal if you can find the right person. After reading the book, do you have any feeling for what you are looking for? Have you seen anything affecting the tics like foods or allergies? Are there any physical issues that you think might be involved? Please drop a note back and let's see if we can think of the best type of field for your situation. Maybe you could let us know a little more about your child. I think many Forum readers would relate to your feeling of being overwhelmed. It's so hard to look for answers while you are dealing with the symptoms in your child and your own emotional reaction to everything. You aren't alone, and we would love to try to help you.
  21. Hi -- One approach to look into with light sensitivity is the Irlen method. Please see this link: http://irlen.com/light-sensitivity-fluorescent-lights-and-irlen/ Helen Irlen is on our advisory board and Latitudes.org has articles by her: http://latitudes.org/helen-irlen-ms-answers-parent-questions-on-scotopic-sensitivity/ http://latitudes.org/the-day-the-notes-stopped-dancing/ http://latitudes.org/finding-solutions-through-irlen-techniques/ http://latitudes.org/can-tints-help-adhd-tics-family/ Two other things to consider would be lab work through an integrative practitioner to find out if there are nutritional imbalances that need to be addressed. Also, a screen to rule out heavy metal overload or toxins in the body. Both of these situations can affect vision. I hope everyone on this thread who is dealing with this can find some relief. It is such an all-consuming problem for a child!
  22. Hello WorriedMom55--I know I dropped the ball on this thread! My dad passed away in December, and since then I can't seem to get caught up with things. I would love to know how the screen restriction period went, as well as the dietary changes you have tried. Have you seen any changes that give you encouragement? I hope you will please update us on how everything is going if you get a chance. Sheila
  23. Hi EileenC, So sorry for the delay in responding to this. The doctor Lisa saw several years ago has rtired. And unfortunately the homeopath, who was much loved by her patients, died in a car accident. Please let me know if you are still looking for a referral, possibly to someone who could run the same type of tests that Lisa first had completed. Sheila
  24. Hi jpdmom, Can you let us know if you found any answers for your child? Did the tics continue after the antibiotic cycle was completed -- and did anything else transpire? We would love to know and hope the situation has improved. Sheila
  25. Sarah, thank you for posting on our Forums and I hope you are finding some useful tips. You mentioned that you were going to see the pediatric neurologist in January. Did you do that -- and what have you learned? As you would know from your readings, there is frequently a connection between the immune system and tic dissorders/Tourette syndrome though this is not always acknowledged by the conventional medical community. Since you suspect your boy may have allergies or asthma, it would be useful to pursue that avenue regardless of whether could be a connection with tics. (Be aware that some related medications have a potential of aggravating tics so be cautious about potential drug side effects if any are prescribed). You mentioned that you have celiac disease -- so it would make perfect sense to explore that for your son or have him tested. Other typical factors often might include other food sensitivities, sugars, artificial additives, every day toxins, outdoor allergens, a nutrient deficiency, pets, and mold exposure. The frustrating reality is that you could control for one factor (like gluten) yet something else (just an example: like new carpeting that is outgassing) might trigger a tic and make you unsure if a diet change is helping. This is where a comprehensive approach can be useful. Please drop a note and let us know what is going on now and if you have any more information to tell us. Hoping for the best for you, Sheila
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