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Everything posted by Sheila

  1. Hi Patty, sorry I didn't answer this, just missed doing so. Sorry but I don't know the answer regarding the liver. "Reaching" is usually a good thing to do when trying to find answers! Acupuncture sounds good -- and the biotin. Are the acupuncture treatments focusing on the liver? I hope you come up with the connections you need. By the way, it was so fortunate that you found a NAET practitioner who could help his vocal tics. Sometimes it works for people and sometimes it doesn't, and the skill of the person doing it can make a big difference. ( If it is someone you would recommend, woul
  2. Hi Jacky, welcome to the forums. How has your daughter been doing after starting no dairy and sugar? Any change at all? Any other association or change in her life that you can think of besides having a cold (that humming started after)? Hopefully some answers will be forthcoming. My son had tics (resolved) but humming was not one of them, so I am jumping in here but not able to give you a personal experience. Please do let us know how things go.
  3. mrbeanhq, for a full list of items without additives you could get a membership to the Feingold Association. They have a lot of info on their website for free, but the membership could be well worth the cost since your child is sensitive to many additives. In addition to membership benefits described on their site, they publish a comprehensive additive-free food and shopping list for an additional cost that they update 4 times a year, which saves you reading labels (and they even search out ingredients that might not be on a label.) It also addresses salicylates mentioned by Chemar, above
  4. mlee, the time frame can sometimes depend on what someone is intolerant of but typically a few weeks should be good time to start seeing progress. It has been a week for you now -- are you seeing any change? It is good you could have someone develop an eating plan, it can be hard to figure out on your own when you have some classic (common) items as you do. We will be anxious to learn more -- and what aspects of the new diet are most challenging or hopefully easier than you expected.
  5. Thank you for your response, Chemar. I agree with everything you said. It is unfortunate that there is so much misunderstanding and misinformation about this topic. Confusion might be a better term in many cases, and there is not an answer that fits everyone. But most on this forum would agree that the doctor should have pursued it, if nothing more than to rule out a possible connection. Yes, it could be good to post your situation on the PANDAS/PANS site on this forum if you have not already done so. Please let us know how everything turns out or if you find new answers. Glad you can
  6. It's great that your son's teacher has developed a secret hand signal for him to leave the room to calm down. And I see your note about two of your kids being in their 20s. What did the infectious disease specialist say last week? A national organization had some trigger suggestions for eczema, which you said you were dealing with. It's a good reminder to go natural throughout the the home, not just with personal products. For the mattress, after you have it cleaned, Amazon carries hypoallergenic covers that can be a help (other stores have them as well). Most comfortable ones h
  7. Hi mlee. I like LifeExtension.com for a quick review of some nutrients. Although they are selling product, they offer reviews from the literature. This might be helpful to you on L Theanine Click here.
  8. bernerchiro, this is encouraging! Thanks for the detailed report. I can imagine that a monster truck show would be very stimulating. Please do keep us posted on the nutritionist and anything else that come up.
  9. Hi capreva -- as you probably know, Intuniv (guanfacine) is used to treat high blood pressure. Links below show a 2017 study for which it was not better than placebo and the researchers did not recommend future study on it for a chronic tic disorder. The other link shows you potential side effects. This is not to say that it can't help someone, but the evidence was not strong for recommending it. FYI Latitudes.org is not against use of medications, I'm just sharing what recently came out about it. Hope that helps. (And welcome to the forums!) Recent study suggested not usefu
  10. This is so encouraging bernerchiro. I hope you will keep us posted. I know it can be a challenging diet to follow but if that is an important answer, it will be so worth it! You are paying close attention to symptoms and foods, and that is what it takes. Sounds like you are doing a great job We would love to hear about the nutritionist after you meet with her. Please let us know how it goes.
  11. Hi gaga -- so sorry to read of all these difficulties with your son. Hopefully he will get counseling to rule out any serious issue having occurred. A spine exam is a good idea. When there, find out if that person is familiar with nutritional supplements and testing for food allergy; some chiropractors are, some are not. Where do you live? A doctor who specializes in nutritional imbalances might be able to help. Also, if this came on on suddenly, do you think there is a chance he has an infection of some kind? Diet can make a big difference to help support the emotions. A
  12. Hi vlada_s, thank you for sharing on the Forums, and welcome. You have done all the right things with seeing doctors. that is good to read. Sorry no one got back to you; long messages sometimes get overlooked. Today should be the day for the allergist, right? Please let us know what the allergist says, OK? In my book, which you said you have, there is a section on lab tests (by Wm Shaw) and perhaps the doctor would consider some of those. You will want to be ruling out any toxins, if possible. You are right to be concerned, but do not assume that this means your little girl wi
  13. Hi Marie, For starters, your pediatrician or naturopath could order blood tests to look for a bacterial or fungal infection. But I am not saying you need that, it is a decision the practitioner could make, and he or she might decide on other types of tests as well at some point. Did your son have a cold, sore throat or any illness before the tics started in November? Can you think of anything that changed in November--home, school, activities? And does he have allergies, or do you have them in your family? If your naturopath is experienced with food sensitivities, you might wa
  14. Hi patty, We have not had reports, to my knowledge, that link Tourette's and hair loss at an early age as you describe for your son. I know you and he would very much like an answer for that. Off the top of my head -- not as advice based on experience -- you could consider consulting an endocrinologist re: the hair loss to see if there is a cause that has been missed or options besides Rogaine. Have you done that? I imagine you are reluctant to consider a strong medication given the other symptoms and allergies you describe. I checked on the internet briefly, as I am sure you have
  15. Hi Kimfocusinmind, To date no one has posted on this herb but perhaps someone will write with their experience. As with many healing herbs, gotu kola has some documented benefits, including reducing anxiety, but some caution is also needed. Here is some information on it, see an excerpt below plus the full article from Penn State There are many types of gotu kola preparations and it could be best to consult an herbal specialist if using it. It seems Anthony, the MedicalMedium linked by you in your post, only suggests it along with a lot of other conditions it might help
  16. Hi motherof3, we are glad you wrote and welcome to the Forums. What is the date for your PANDAS evaluation? It sounds like you have already started some key dietary efforts. Even when PANDAS is involved, it can be helpful to avoid potential triggers as you figure things out. It takes time to get accustomed to different terms, like additives. Just do the best you can at this point and look for foods with simple ingredients. The Failsafe cookbook will avoid salicylates, which may or may not be an issue for you. I raised 3 kids, one with Tourette's, and know you have your hands full.
  17. Hi Anna, We are happy to have you join the forums. I can see why you have been so concerned about your boy's tics and his running. It sounds like you have done a good job of keeping track of what he has been reacting to. About the salicylates, have you had a chance to read the thread by KevinMA : Detox diet - blogging our journey ? It was just updated today so you will see it near the top of the list. I mention it because he discusses salicylates and maybe it will give you some ideas. You have seen several issues improve, but now notice this hypersensitivity. It is impossible to say w
  18. Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction. You can also ask this person for suggestions on nutrient supplements. Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. If your son has a problem with gluten-- and not e
  19. Hi jcmom-- I'm glad you found something that is helping your son. Is he still doing better with this? Collagen has a large amount of glycine, which plays a role in muscle development. Collagen also affects the nervous system. For a medical explanation see here. I saw an article that suggests the supplement may help improve the health of the gut, which we know can be linked to behavior and tic problems. However, it is not proven. Dr. Mark Moyad, who is quoted in this article, suggests that contamination can be a problem because collagen can be derived from a number of types of animal/fi
  20. Hi Mombear--welcome to the forums, though I'm sorry it has to be when you are dealing with these difficulties with your son. I know it is so concerning. I would suggest that you may need a professional help deal with some of the issues you have described. The good news is that you have seen a connection with the immune system and allergy, which conventional medicine does not explore for most tics. At the same time it can be difficult to figure it all out by yourself. To answer your question about any one else having success in eliminating tics, yes --my son's problems started with ma
  21. Hi --You are right that services seem to be geared toward kids. Since you are in Canada and can't find local resources in order to try a behavioral approach, you might want to try an online program (which I do not have feedback on from users). It ALSO seems designed for kids but it would seem that adults could use the techniques. That is just an assumption on my part. There is a fee for the program. https://www.tichelper.com/ Neither myself nor latitudes.org are associated with this, I am just passing it on in case it might be of use. It is totally online, as I understand it.
  22. Hi -- that is an interesting question. I couldn't find any research on the subject, although there is a single case report of someone who had Tourette's and also had thyroid related issue. So you are saying that your son has TS and you are on thyroid supplements?
  23. Hi -- you are making some very positive changes.Good for you. So glad you are reading labels now. It could be that an air purifier in the bedroom with a HEPA filter would make a difference, if you can afford that. It is important that the bedroom be allergy free. Can you steam clean his carpet or whatever the powder was put on? Do you have a doctor/naturopath who could check to see if he has an intestinal candida yeast infection and needs an anticandida medication--and could determine if he has a nutritional imbalance? Hoping you see real improvement with your efforts!
  24. Hi -- sorry for the delay. I heard back from the neurologist who also thought there could be an emotional component but could not say based on the short video. He thought seeing a pediatric neurologist as you plan for a second opinion, was a good idea. Where do you live? Am wondering if it makes sense to be tested for Lyme based on where in the country you are? Also, a suggestion -- I would remove the link in the opening to your first post, so that in the future it will not be readily available for sharing. (You know you can always remove the link on YouTube when you are finished wit
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