Sheila

Hi pinkmom, Thank you for sharing this helpful information on magnesium. I have spoken with Dr Teich at length on the phone and know that based on the approach he lists on AAEMonline.org as well as our conversation, he does the type of assessment and treatment that many have found useful. That said, we have not met and I do not know anything about his practice as far as insurance, costs, etc. (except NYC and some other major cities always seem high). If you see Dr Teich I hope you will let us know how things go. Some in Dr. Magaziner's office (the clinic you are considering) do similar testing--it seems Dr Kyle Meyer is a naturopath, not an allergist or physician. Naturopaths can be very helpful, it just depends what you need. I am not trying to convince you who to see, one way or another. Do you think you will see someone soon?

thanks for the helpful update! Are things still progressing nicely?

OK, good luck. Maybe someone else will have different advice! Sheila

gaga, please keep a log so you can monitor how things are going. Something simple, not stressful. We have charts for free on our Trigger Resources pages, which were actually designed as a supplement for those who order the Stop Your Tics by Learning What Triggers Them book. Why don't you go to the section where we have these charts and see if something appeals to you. I think it will help you to put ideas and plans down on paper and that can relieve the need to keep thinking constantly about things. It will also help to give you some direction. I know what you mean about fearing for the future, but as long as you are taking steps in a positive way and seeing some improvement, you will feel better and so will he. Studies have shown that most of what we fear never happens. And it is so good that he is happy and doing well with sports. Enjoy his smiles. Also if you keep a log, then if things worsen for a bit, you can go back and try to figure out what might have caused that to happen. One reason we feel so out of control with tics is that we imagine there is nothing we can really do about them, but for most people that is not the case. There is lots of reason to be hopeful. If he continues to do well and you still have the same problem of worrying so much, then it would be good to get some help for yourself. You could think about seeing a good counselor or find a naturopath who could see if you need something to help adjust your emotional state. You sound like a wonderful mother, and you may have the tendency that most of us moms suffer from, of putting everyone else's needs ahead of your own. You will be able to help your family more if you can find some peace. If you are needing certain nutritional balancing, then that makes it much harder to feel happy. Sometimes there is a simple solution. Does that make sense to you?

Hi mildticer, Welcome to the forums. I see that no one jumped in here with the particular breathing tic problem you are having. Sorry to hear about it, I'm sure it is a challenge. I wanted to mention that in a situation like this, it is sometimes helpful to think back and try to remember if anything might have changed in your life about a month ago when this started. In other words, approach it with the assumption that something caused the change. It could be something like stress from a new job, change in relationship, or an infection. But it could also be something like a new location for work or home (environmental issues--exposures to dust, mold, new furniture) a pet, allergies--or even a change in personal products -- cologne, for example. Also a major change in diet or drink. Or even a new or different car. There are a number of influences that can play a role. Can you take a little time to brainstorm anything that has changed along those lines? Please let us know. I hope you can get back to us and also hope you are feeling better, Sheila

Hi tropea22, Detox as a treatment has been helpful for tics, but typically when there is evidence of some type of toxic overload. As one example, it was learned by parents that their young boy with severe tics had been exposed to arsenic. After that was discovered through lab testing, his tics were successfully treated with detoxification efforts. Others have been tested and found to have high levels of different toxins. The concept that toxins can affect the nervous system is grounded in common sense. The methods used to "detoxify" should be determined by an expert and any treatment carefully overseen. That said, the term detox is used quite broadly these days, especially given the fact that in the West, most of us have been exposed to toxic chemicals and have assimilated them to varying degrees. Certain foods and nutrients are often touted to detoxify the liver and the body. In your case, did the naturopath have specific reasons to recommend these remedies or do you think it is more of a general cleansing approach? You might want to be sure that the naturopath is well trained in homeopathy for children. (This is just a general statement, I have no idea who you are seeing and what your specific situation is.) I hope this is some help.

Hi gaga, It can be upsetting to see the worst situations online. I'm sorry it has been so difficult for you. Have you had a chance to do any of the suggestions that others made in your previous February posts? Tic can be concerning, that is for sure. But the swearing is not common, as you mention you have read. It helps to know that you are doing something to try to address the diet or allergies you said he has; feel like you are moving in the right direction. Maybe you can get some support and counseling for yourself? Let us know how things are going, please and what your options are.

This is a good suggestion, James. The pre-test (with tongue depressors or similar approach) can often reveal whether this might be a good connection. it is not always a foolproof assessment but worth considering. We have a number of posts on this on the forum. Go to the search box and put in Stack. All threads related to an appliance are not under that search term but you will see lots of feedback and can then search for related topics if interested. It can also help to have a jaw assessment by an experienced chiropractor, an osteopath specializing in manipulation, or an expert cranial sacral therapist who could assess the situation and possibly make adjustments. It would be great if both of you will keep us informed, and we sure hope it goes well.

Bernerchio, your efforts really are inspiring, and I love that you have a nutritionist guiding your steps. That can make such a difference. You have the determination it can take to bring about change. For some it is a simple fix, for others it takes a wider approach, as you are doing. For the light sensitivity, you might want to consider getting him tested by an Irlen specialist. I know you mentioned some improvement in this area but he might respond to Irlen filters (you can also search Latitudes.org for info). When there is a connection to specific light wavelengths, they can address that -- which removes some of the visual stress. His sensitivity sounds quite significant, as you described it affecting his gait. (I'm glad he could manage the books without much blinking!) We really appreciate you keeping us updated on your approach and the results. It will help many people. Will watch for more news!

Jacky, for sure we hear about those specific items triggering tics. There are many such accounts on this forum. Also consider whether your little daughter is in her bedroom more at night around the time you describe, and whether that might be any clue -- lots of people find their kids react to a dusty room or bedding/mattress, or other issues in the bedroom. How is she when she wakes up in the morning after a good rest?

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, would you please send me a PM with the person's name and location future referral purposes.) Anything else new at your end?

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.

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. Something to consider.

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.

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 get mattress dust covers -- they make them for the mattress and for pillows.

How are things going now, jcmom?

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 have cloth material on the outer layer. Looking forward to hearing back, Sheila

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.

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.

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 useful for chronic tic including Tourette's Side effects

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.

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. Are you able to make sure he gets wholesome food (skip the junk food!)? I know it can be so concerning to see your child go through this. He needs help and I hope the headteacher can point you in the right direction.

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 will develop Tourette's. There is no reason to assume that. I always remember a mother writing how her little boy's tics were so bad that she had to carry him. It turned out he had been exposed to arsenic in pressurized wood, and once he was detoxified for that, he was OK. There are so many things that could play a role in tics, and you want to look into them. I'm surprised the neurologist did not do anything in the way of evaluations. Please do get back to us on what the allergist thinks. And hang in there, there must be answers for your daughter. Question: any chance there is mold in your home?

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 want to let that person guide you on diet at first, to avoid frustration at your end or feeling overwhelmed. For milks, a lot of people find that types like almond, almond/coconut, or rice milk can take the place of regular milk. You can get more ideas from your practitioner when you go for test results. How is your journal keeping going--have you been able to note any positive change yet? Remember that everything does not revolve around diet only, although it can certainly be a major, important player!

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 done more thoroughly, for a connection between Gilbert's Syndrome and hair loss, but only read a couple of comments from doctors that suggest there is not a connection. Of course that is not definitive. What are your thoughts on that? And how is your son doing otherwise? Well, I hope.