Sheila

We know it has been very difficult for you. The conditions you have can make things seem like a roller coaster, and when you are down it's super hard to realize that you really will be up again. You have friends on this forum who care very much about you, and beerae22 has excellent advice--that you get help from someone in person rather than trying to connect through the internet. Please call the suicide hotline she mentioned when you feel desperate, and turn to family or professionals you know who can help and will be able to follow through with your needs. It's too much to try to go it alone. Please let us know how you are doing--we care and will be watching for a note from you tomorrow!

Hi Seattlegirl, Sorry for the delay in getting a note to you. First, it is wonderful that your son's dad should be back by now? (Did that help anything?) It's so good to know that you were able to target some diet changes that helped your son's tics. Congratulations on making that effort. But we know how distressing vocal tics can be, and you say these are a recent problem for you. One thing you didn't mention in your letter is anything about allergy or possible chemicals in his environment (or in personal products) that could be bothering him. When you have a chance, please let us know if your son has allergies that you are aware of? And whether you have "gone green" in your home with using natural products and avoiding scented items. Even things like perfumes or fabric softeners can bother some people and increase vocal or motor tics. Plug-ins, scented candles, new furniture, paint, can all have this affect. It is not unusual for us to hear that a vocal tic was linked to a chemical exposure. Please give this some thought--whether he could be being exposed to something different at home or school, friends/relatives' house etc. that might be aggravating his nervous system.

Hi Hope2, So sorry to read that your son's symptoms are worsening. It sounds like you are wanting a standard diagnosis for him. The Tourette Syndrome Association says they maintain a list of physicians who are familiar with Tourettes. (Once you have some names, you could call the doctors office and ask about PANDAS also, if you are wanting to rule that out.) From the TSA site: "We get requests for referrals to physicians or therapists (TSA maintains lists by state for Physicians and Allied Professionals as well as legal resources and various camps and schools). . . . Telephone 718-224-2999 or email us. Link: Email TSA " Hopefully you can call them and get some referrals for a diagnosis. I hope this help! Please let us know how you make out.

Hi,Whit-- Welcome to the Forums! Sorry to be so long in getting a response to you. It's good to read that you have an environmental physician and your son has been doing better over the summer--but sorry to read about the recent setback after starting school this year. First, for sure seasonal allergens can affect tics. Many parents on this forum could confirm this. When tics start up during back-to-school time, there's a number of things you can look at in addition to outdoor allergens--particularly the indoor environment in the school as well as any chemical exposures outside. Can you please tell us a little more-- Where do you live--city or state? and what is his classroom/school building like? Is it old and moldy, or new, or freshly painted, carpeted, etc? Is your son on any treatment beyond the ASD-PLEX (sorry not to have a replacement to offer) and dietary restriction--avoiding, I assume, corn and peanuts? Did your doctor put you on any other avoidance program? Would love to know more.

What kind of antifungal is he on? Had he been on any antibiotics? I've heard of an allergic reaction to them causing that, not typical.

Yes pik, this board is and always has been monitored, Though we are sympathetic to your situation, we try to be evenhanded in the public information that is shared about various physicians as well as other people. We have an advisory board that sets policy and we do our best to follow it. Part of that policy is: Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. In particular, though we can't claim to catch every negative post, we try to make sure that material that is against the guidelines does not remain in a public venue in which a person being criticized is not able to defend him or herself. We always appreciate when members alert us to posts that need moderator attention. We felt that the material that was left on your posts after editing was sufficient for you to get your point across. As a reminder, everyone is asked to please adhere to these guidelines, found in full here. Thank you in advance for your help with this issue! Sheila

Hi Philamom, I'm sorry to hear about your mom needing surgery and hope it goes well. I'm bumping this up in case you are still looking for someone to swap IVIG dates. Let us know once you are all set!

Hi -- Have you already figured this out!? Please let us know. (Maybe you have mentioned it elsewhere by now.) Anyway, usually gum overgrowth is due to medications, and the side effect is part of the drug information sheet. Dilantin for seizures has this but a person needs to take it for an extended period. I noticed Dr. Weil was discussing this reaction to drugs and wrote " antibiotics and antifungal medications may help, and a study published in the April 2011 issue of Neurology suggests that folic acid supplementation may lessen overgrowth caused by the antiseizure drug phenytoin (Dilantin). Maybe those interventions are of help in general, not just for a drug response. Would that make any sense in your son's case? Did you end up doing the stool test? The mention of antifungals above was interesting in light of your comment. Hope the problem is resolving?

Hi Rachel, I'd agree that shampoo is quite possibly the culprit. You want to look for ones that are unscented as well as made with natural ingredients. Here's one as an example Click If you click on the bottle you can see what it "doesn't" have -- these are things to avoid. One other possibility, though admittedly not as likely, is that your bathing water has contaminants (like chlorine) that bother him and he gets a more exposure to it when washing his hair. We have heard from people with tics who were so sensitive that they were noticing increased tics every time they showered until they filtered out the toxins. The fact is -- everyone in the family is better off with natural shampoos, and when possible it is good to have a whole house filter or a filter on the shower head to remove chemicals that can be released from the water as steam or absorbed through the skin. We'd love to know if you try anything that helps!

Hi Ilovedogs, Thank you for taking the time to post--you seem to have found a wonderful balance, while doing what you can with the interventions you know help. I love this : With all the diagnoses we've received and all the money I've spent, I know that, in the end, it's all going to be OK and that my son will succeed. The plan may not look like everyone else, like mainstream kids, but that's because it's his path and not someone else's. I had to find acceptance in ALL of it and I had to face my fears and I had to make sure that my son didn't see those fears and that all he got from me was support and love. It's so good you worked hard so your son didn't see your fears. That's so hard to accomplish! (My 3 kids each had different types of challenges, and I wish I could claim to have accomplished that with them.) Self esteem is such a huge factor at the end of the day, and it sounds like your son will have a good strong dose of it. Congratulations on bringing it all together -- (and thank you for having been such an active member on the Forums!)

http://www.houstonpress.com/2014-06-19/news/pandas-medical-mystery/

Hi Grandma, There is some controversy about the difference between food allergy, food intolerance, and food sensitivity. Some parents don't worry about it and just have the goal to avoid anything that is troublesome. It is helpful, as you say, to have some direction to go in. You might want to look at this group in the UK which also has a link to related types of groups. http://latitudes.org/food-allergy-made-simple/ Dr. Albert Robbins wrote an article on food allergy that might be helpful to you. http://latitudes.org/food-allergy-made-simple/ Of course the goal is always to eventually figure out what is behind the sensitivity/allergy so as to calm the nervous system and make someone less reactive. Hope that helps. Sheila

Hi tstryker, It sounds like you've made some good progress with your son. We know that setbacks are tough to take though. A couple of things struck me. It would seem that your own observation that tics are typically worse in the spring and the fall could contradict what you were told by your naturopath --that there were "no environmental allergies." I would not assume that statement to be accurate—or perhaps it is a difference in terminology and there are intolerances that don't fall under her definition of allergy. Or maybe she was talking about that particular testing day? No one gets it right all the time, especially if this was based on muscle testing which is an approach some find helpful, but results can vary widely. Don't let that comment keep you from exploring environmental possibilities. You were also told by her at the time that there were no major food allergies, yet you have noticed foods that make the tics flare: corn, soy, food dye, nitrates. It's great you have been able to figure that out on your own. Whether your son is experiencing classic food allergy or an intolerance or sensitivity, focus on your own observations. I'd start watching with an open mind for what might possibly be playing a role at home, school (in school?) or outside the home. It might be a good idea to print this list below and think about what might be involved. Could you let us know what you suspect on this list? http://ticsandtourettes.com/downloads/acn_tics_triggers_checklist.pdf By the way, we are preparing an article on mouth appliances and will ask the specialist about letting teeth grow in. Wishing you lots of luck and hoping to hear back from you, Sheila

Hi Marce, Just wondering how you are doing now that you have removed all dairy for a couple of weeks. Any improvement? You said you read my book--good place to start! In addition to working on diet, I hope you have been able to get rid of scented things around the house. Any progress there? Those supplements should be fine to take. We'll be interested to hear what you find with them. Don't forget to avoid ALL artificial flavors, colors and preservatives. Is that hard to do in your country? I'm wondering --do you have other allergies that you know of besides dairy? Good luck with your efforts. And thanks for joining the Forum!

Hi Mar, just want to join in on the congratulating! I know you've been with our Forum for a number of years now, and while getting help you have also offered advice that helped many others. Thank you for that. It's great to know your efforts on controlling your son's diet have paid off. All mom's know what a challenge that can be!

Pippi, your report on treating tics with an organic diet is very inspiring! You were a real trooper to try several interventions and not give up. It can be so helpful to have an experience that serves as a big wake up call, like the apple orchard (conventional apples being the #1 worst produce for pesticide contamination.). Imagine if you'd never gone there! Fortunately, you were the type of mother who put two and two together. So many others would have just moved on without making the connection. As you no doubt know, pesticides are neurotoxins--so they should be avoided by everyone as much as possible, especially those with Tourette's. So happy for your family! I'm sending you a private message (PM) Sheila

Hi Pie_224, Sorry for the delay--and to read that you have been dealing with Tourettes since the age of 5. I imagine it's tough as a young mom of two. We're glad you wrote. As a starting point, please do me a favor. Go to this article and see if any of the triggers mentioned there ring a bell for you. We feel that a lot of folks don't know that there can be a lot of things that aggravate tics. http://latitudes.org/tourette-syndrome-association-investigated-part-eight/ In that article you will see a link for Finding Triggers, and it has some additional tips. Please respond and let us know if you have noticed any triggers, and what type. Then we'll see if we can help come up with some answers for you. I read that you don't have insurance. . . Even if you haven't noticed triggers (except the opposite, sitting with a boyfriend!) please respond as there should be things we can come up with to help you. Sheila

Many on this board have told us that when they see a doctor about tics, they're given some combination of this advice: It's probably a transient or temporary tic that will get better on its own. There's nothing you can do—but don't worry. Your child has Tourette syndrome. The tics will "wax and wane," (come and go) and this is one of the mysteries of Tourettes. The best thing you can do is simply reduce stress. The tics aren't bad enough to offer medications because they are very strong. Come back when the tics are worse. I can offer you Drug A and we can see if it helps. If not, come back and we can try Drug B. There is no connection with diet. Natural therapies or allergy approaches are no help. Families are often annoyed with their neurologist or pediatrician for not being more helpful. Or for dissing them if they suggest they have seen a diet connection or other trigger for tics. But it's not entirely their fault! Doctors get their advice from the national Tourette Syndrome Association (TSA). For years the TSA has gone out of its way to make sure you don't use simple, natural approaches. It's appalling but true. Check out my latest article in the series that shows how the TSA discourages families from finding helpful approaches that you could start looking into today. The first comment to the linked article is fabulous, check it out. Then please add your own comment. http://latitudes.org/tourette-syndrome-association-investigated-part-seven/ Children and families deserve better. Things won't change until we all make it happen! Sheila

Hi Jaal, Edward was treated in a manner very similar to this recent article: http://latitudes.org/finding-help-last-diet-environment-causing-tourettes-ocd-child/ I spoke with Edward's family several years ago and he was doing very well. If you would like to learn more about this approach, which includes efforts you can make at home in addition to seeing a doctor if that is necessary, it would be best to get our book, Natural Treatments for Tics and Tourettes. There are lots of family reports there. There is a lot of information there that is not possible to share in the forum or single articles. Everyone is different and there is not one single answer for tics and related symptoms. I hope that helps! Best wishes, Sheila

The latest article for this week has been linked.

Hi Pik, We know how very difficult it is to find a doctor that is the right fit for a family (Not to mention the expense!). Unfortunately, it is a major challenge. That said, we do our best to avoid focused discussions of any particular physician in this open forum. Members should please send a private message if they have any comments they would like to share. We hope you understand--and also hope you find the right doctor for your family. With best wishes, Sheila

Chances are, if you were satisfied with the treatment options that are available for Tourette syndrome and other tic disorders, you wouldn't be on this forum. So many families like you need help finding better therapies than the drugs that are offered. We've written a series of articles calling for an investigation of the Tourette Syndrome Association because for the last 40 years they have ignored information on safer, new directions for treatment while at the same time having a virtual monopoly on information provided to the media. Don't believe me? Click the links below and follow this effort. A 10 PART SERIES ONE Making our case – The first in a series of articles TWO Looking back 40 years THREE There’s a lack of research studies reflecting positive reports received FOUR Dr. Marshall Mandell’s amazing discovery was ignored by the TSA FIVE The TSA ignored the work of Doris Rapp, MD SIX The TSA medical board ignored the findings of the Alternative Therapy Network for Tourette syndrome even while TSA staff referred families to it and success stories with natural treatments were mutually shared. SEVEN The TSA and our organization had a liaison relationship for a few years . . . yet they sought to stifle our message and discourage people from trying natural approaches. EIGHT The TSA has failed to alert the public and medical community that environmental triggers can worsen Tourette syndrome symptoms. Their negligence is indefensible. NINE The TSA has censored and controlled the media message, making it difficult for families and physicians to learn of integrative and natural approaches to Tourette syndrome. TEN This is the final article in a series that has documented the Tourette Syndrome Association’s (TSA) failure to determine the cause of Tourette syndrome and find safe, effective treatments for symptoms. Please support this very important effort. We need to make sure research goes in the right direction and families learn about better options for treatment. Thank you, Sheila

Just a note that this mother http://latitudes.org/finding-help-last-diet-environment-causing-tourettes-ocd-child/ told me chicken was one of the foods her daughter was most allergic to. Not usually at the top of people's list.

Hi Momwithacause, It sounds like you are making exciting progress with your son. That's great. I'm not aware of DMG in injection form (except as a vet product). Deplin is a dietary form of B6 and contains L-methylfolate; it's a prescription "medication"--a water soluble vitamin. You can see the company site here http://www.deplin.com/ Hope that helps and good luck as you keep tweaking things for your son, Sheila

ARTICLE Fox News April 1: Justine Pelletier family wants to take up Harvard Law Prof. Alan Dershowitz's offer to help See here