Sheila

Hi Mar, Here are some forum links on expanders and tics, and they tend to be quite reassuring and positive. Hopefully your daughter will experience the same. At least you are aware that in some cases there might be a reaction, and you can deal with that if it happens to occur. These links are the first ones that came up for me; you could search "expanders" in "forums" and see what else you find. Please do let us know how things go. Hoping for everything to go smoothly, Sheila http://www.latitudes.org/forums/index.php?showtopic=16586&hl=expander http://www.latitudes.org/forums/index.php?showtopic=20165&hl=expander http://www.latitudes.org/forums/index.php?showtopic=20165&hl=expander http://www.latitudes.org/forums/index.php?showtopic=10160&hl=expander

This was moved from the OCD forum in the hope that members posting on PANS might have some comment.

Good luck with looking into allergens and chemical exposures. Am not sure if you have seen this article on triggers on our site. It is expanded in our book (the book is featured on the website where those worksheets are provided); the article gives you a quick start. http://latitudes.org/articles/finding_triggers.htm The comment about infection was just a general one, am not implying that one exists. It's good he hasn't been on a lot of antibiotics. For sure it could be a good idea to look into candida, especially since this was mentioned to you already. Many with tics report a reaction to sugary and yeasty foods, and this is sometimes connected with candida.

This is a video prepared by Dr Demerjian in Burbank, California, contact info at the end of the video. There is definitely a connection with jaw alignment for some people with tics/TS. It's always encouraging to see success stories. You can find other videos online. Here's a published case report http://www.tmjstack.com/casereport.pdf

Hi -- again, have a related comment under your Tourettes forum thread. NAET is difficult for me to respond on. Some people find it helpful and some reputable practitioners endorse energy medicine like NAET and similar approaches; other families report it was not useful. It may depend both on the the individual health circumstances and the person doing the testing.(If NAET treatments were going to clear the food allergies, shouldn't your son be able to tolerate the foods better and not need the strict elimination diet? Or did you just use it for identifying troublesome foods?) I can say that OCD, tics and hyperactivity can all be affected by foods, allergens, and chemical exposures. I personally would explore more traditional testing for inhalants (as mentioned in Tourette forum). Not sure if that is feasible for you. It's not possible to predict whether managing allergies will completely eliminate symptoms, but it should help. If there is an unidentified exposure or infection that is creating an underlying immune hypersensitivity, it could be difficult to completely heal until those factors are under control. These are just general comments, naturally can't be sure about your particular situation. You son sounds like a real trooper though, having cooperated with your efforts -- and fortunately finding some success. Sheila

For the inhalant allergies, you might want to consider Modified Quantitative Testing (MQT). It is mainstream, generally covered by insurance, and is considered more accurate than standard skin pricks. It provides a more specialized therapeutic dose than standard inhalant testing. Could look for someone experienced in this technique. If you introduce a new food back into his diet that you already know he has been sensitive to, a very small amount should be used to avoid the possibility of a significant reaction. Also, try to have it in pure form (not a processed food) and organic. For example, a little organic cream of wheat made with water versus a muffin. This assumes wheat is a problem, not a gluten sensitivity. Avoidance of a food for more than a year is often helpful in reducing reactions in mild to moderate food issues, but it depends on the severity and type of food. Peanuts, tree nuts, fish and shellfish are often the most long term. Some allergists prefer to have a child retested for a food before introducing it orally, to be sure it seems safe -- again, depending on the circumstances; and some want to have any oral challenge done in their office. You can be the judge of whether that is needed based on the level of reactions to foods that you've seen. It is important to be sure that he avoids all chemical additives in foods including artificial sweeteners, while you also watch the environmental exposures. And keep sugars to a minimum. Has anything else changed for him -- new house, remodeling or painting, leaks and mold, pest treatments, new car, new or remodeled school? And what do you think about his bedroom--how is it as far as electromagnetic exposures and dust, pets, etc? Sheila

Bumping for content on approaches to home electromagnetic exposures.

Hi JosyJoy, I just posted a note to you in the Tourettes forum, where you had started a thread. It is related to food allergy and other allergens, and how they can cross react. Not sure if you will find that a match for your son. http://www.latitudes.org/forums/index.php?showtopic=19978 We do know from reports we receive that OCD behaviors can be triggered by foods and allergens, though of course there can be other factors playing a role, as Nancy has pointed out. Hope you will keep us posted on how things work out for you and your son. Sheila

Hi JosyJoy, It's good you have been able to stick to a rotation diet and see improvement with tics, and you say you've seen they get worse if he eats the wrong food. But I know that is hard to maintain that diet. Sometimes people can let up on the diet a little after an extended time, or at least experiment with doing that. Sometimes the food reaction is related in part to the total load of allergic issues a person is dealing with. In other words, if he is an allergic child and those allergies are not under control (dust, mold, pollen, animal dander) or he is exposed to toxins/scented products his food sensitivities might be worse. Since he is so sensitive to foods, there is a chance he is also sensitive to other things in his environment. Did your doctor advise you in this area or have you had a chance to look into it? Tics often do get better with age-- just as childhood allergies often improve over time. Of course it is hard to predict. The Great Smokies Medical Center clarifies some of the common cross reactions that can occur between foods and inhalant allergens. See the info below. Does your son have allergies? If so, they may need to be controlled in order to get the best response to dietary approaches. If you are especially allergic to ragweed, there is an increased chance that you will react to the following foods through cross-reactivity: chamomile, melons, squash, egg, milk, mint, bananas, and lettuce. If you are especially allergic to grass pollen, there is an increased chance through cross-reactivity that you will be allergic to: legumes, including beans, peas, cottonseed, soybean, and its byproducts, and cooking fats. If you are especially allergic to birch pollen, there is an increased chance that you will react to the following foods through cross-sensitivity: raw apples, carrots, and celery. More info from this site here. Does any of this seem to be a match for your son? Sheila

Bumping this up for the good ideas!

Hi MMMommy, I just wanted to say hi, and that I hope you find the help you need for your son very soon. I think you'll find lots of good ideas on both the PANS and Tourette Syndrome & Tics Forums. We're glad you're here! Sheila

Hi Openminded! It's nice to know you've been checking out the forums for a while and decided to become a member. I hope they can continue to help you and your family members. I see you are a retired teacher. If you can find time and would want to offer some ideas to members posting about academic problems, that would be great. Do you have a special area of interest? Know what you mean about not finding the help you needed with the doctors you saw. That's why most of us are here--we've had to be our own advocates and search for answers. Sounds like that's where you're coming from too! Hope you are doing well, and welcome! Sheila

Thanks for all the good feedback. These are great points you all have made, and I agree it works both ways--as well as for posting on other forums about possible PANS issues. I'm looking forward to things going smoothly!

We have merged the PANDAS and Lyme forums under PANS. The two forums were previously separate due to a conflict between members. In the past, some people were insensitive to those who thought PANS type symptoms might be due to Lyme disease or to a combination of infections. We had to make a separate Lyme forum to "protect" these members from aggressive PANDAS posters. The feedback we've received recently is that the tone in the PANDAS forum has improved. Members should now be able to post about Lyme and other infections under a single PANS category and not fear aggressive replies. Please know that we will not tolerate a lack of thoughtfulness on the forums. If we receive reports of intimidating or unkind posts, a warning will be given before a suspension or permanent banning. We are counting on everyone to do their very best to make sure that this a safe and helpful forum for the many who need it. Thank you, Sheila

Bumping this up for its great list of MSG free foods. Some items maybe have been adjusted in the meantime, but it gives a good start. And in general, companies are moving toward less use of MSG, not more.

Hi Lee101, We're glad you're here, and hope you find the help you need. You say your daughter has had tics for the last few years (sorry to hear this), and they have been worsening, especially since last October. I wonder if you have seen our article on triggers for tics. It caught my eye in your last note that she seemed much worse recently -- and this seems to also be when she started swimming at school. Our organization has heard from parents whose kids have had major reactions to chlorine and other chemicals in pools -- behavioral changes, OCD, and/or tic-related activity--even self injurious behaviors. It is possible she is hypersensitive to a number of things she is exposed to in her daily life. While you look for answers to her condition, please check this article and see if anything rings a bell. http://www.latitudes.org/articles/finding_triggers.htm Sometimes a child has so many symptoms over a long period that it is difficult to recognize triggers, especially when not actively watching for them. Finding triggers doesn't always solve the whole problem--there may be other issues affecting the condition such as nutritional deficiencies or imbalances, a toxic overload in the body, or infections -- but it can definitely reduce symptoms if identified triggers are found and then avoided. You want to protect her body from anything that could be aggravating her nervous system. Chemicals/pesticides, scented products, dust, mold, pollens, animal dander (if allergic to it), dietary issues like food sensitivities or food allergies, and artificial ingredients in foods, are types of things that could be playing a role. Have you noticed any times that the tics seem to get worse, aside from fatigue and stress? (You can think about this after reading the triggers article, OK?) If you like, you can let us know anything you have observed, and we can try to brainstorm for answers with you. Sheila .

Hi Eileen, It's good you had your daughter tested to get a better understanding of her strengths and weaknesses. It must feel good to start getting some answers to her academic performance. It would be helpful to have more information on her scores and the interpretation provided though. WISC-IV composite scores (for each of the 4 categories) are usually presented in terms of 100 being average, with a high of 160 (extremely gifted) and a low of 40. And then percentiles are usually given, to tell you how many children out of 100 would have scored the same way. Could you give more details on all the scores they gave you? It makes sense that they would not provide an overall IQ with personal strengths in some visual areas and weaker verbal skills. It's kind of like if someone was a good sprinter but a poor swimmer, it wouldn't make sense to combine their performances and comment on the person as an overall athlete, that would not be meaningful. Could you please write back with more details from the report they gave you and any specific suggestions they gave? Then we can give more feedback. Thank you! Sheila

Hi there -- Sure sympathize with what you and your wife are dealing with. Your son is super cute, and you seem to have a great relationship, so nice to see that. While I think most of our members would agree that he is experiencing tics, the cause of them can vary. It's a good thing you will see a physician who can help rule out any number of medical conditions that can cause tics and behavioral issues. If you are told the tics are hereditary and there is nothing you can do about it except medicate, our organization is here to say that is not true. If you notice, the name of our group is "comprehensive" neurotherapy. The reason for this is that causes of neurological reactions can be multiple, and approaches often need to be comprehensive to get the best results. Sometimes there is an underlying immune issue that is triggered by an infection. But at other times there is no infection. And even if one or more infections are identified, this is often only part of the overall situation. It's important to look at everything that could be involved, from diet to allergens, toxins, infection, and other influences. Please take heart that there are answers out there. A number of environmental issues can cause all the symptoms you mention, including for example, a significant mold exposure-- or home remodeling with new cabinets that outgas toxins (Just using these as a couple of examples). Once the immune system is reacting to something like these, then another harmful influence, such as bacteria or virus, or allergens and foods, can have a larger impact than they normally would. Things can start to snowball. Similarly, an infection can start first and weaken the system -- and then other environmental factors can increase the body's negative response. Just looking at or "fixing" one of these issues could help, but sometimes it won't solve the whole problem long term without a good comprehensive approach. The helpful links list that Chemar gave at the bottom of her post area includes a link to our article on common triggers for tics. (OCD and behavioral issues can also be set off by these, depending on the individual.) Try to go through this list and see if any ring a bell for you. If so, you and your wife could try to eliminate his exposure to them. If there are triggers within your control, hopefully things could calm down a bit as you proceed to look for other factors. See here http://www.latitudes...ng_triggers.htm Let us know if we can be any help with looking at these factors. Wishing you all the best. Sheila

We would like to feature some successful Lyme accounts on our new website, which will launch later this month. We hope you will consider sharing your story; it will be kept anonymous. It can be up to 1000 words. It should please include Age of person and what the symptoms were What led you to suspect Lyme What treatments if any were tried before you realized it was Lyme How you received a diagnosis of Lyme and where you found help How the child or adult is now, and how your family has coped Any words of advice for someone new to the possibility of Lyme Personal accounts are often the best way for families to see their options and we would love your help. Please send your story by email to Sheila@latitudes.org. You will be contacted to confirm that it was received, and for clarification as needed. (If you have trouble keeping it short, type what you want to say and we can tighten it up!) Thank you! Sheila

Also, Stuart -- take a look at the article on our website for triggers for tics and see if any of them seem to apply to you. Let us know -- others may have some additional suggestions and follow up. Do you have a family history of allergy? Have you ever noticed anything discussed in this linked section make things worse? http://latitudes.org...ng_triggers.htm

Hi Stuart -- and welcome! It's good you have started to clean up your diet. That's a great first step. There's lots of other issues that could be playing a role in your ADHD and TS symptoms -- like food allergy or sensitivities, allergens (dust, mold, pet dander, etc), nutritional deficiencies, viral or bacterial infection, to name just some key ones. Are you still in the UK? If so, our book Natural Treatments for Tics and Tourettes is available from Amazon UK. (Of course it is also on Amazon in USA. ) We would recommend the book, as it has many suggestions, along with reports from doctors and families on what might help. After going through it, it may give you an idea of the type of doctor who could assist you if you it seems you are going to need one. We'd love to hear from you on how things are going. Do you have any specific questions? Sheila

Hi TS Mommy, I know you must have gone through so much with the leukemia treatment, and now these serious tics are so difficult to deal with. I'm sure many forum members are wishing the best for you and your family, and hoping you find the help you need. I'm going to send you a PM so we can arrange to talk. Please try not to despair. I'll put some feelers out for possible resources after we talk. Sheila

A new scale for parents to rate the severity of obsessive compulsive symptoms and 11 associated neuropsychiatric symptoms (i.e., anxiety, moodiness, sleep disturbance) is in the development phase and available for use. The current scale is based on the clinical experience of doctors Susan Swedo, Miroslav Kovacevic, Beth Latimer, and James Leckman, with the help of parents Diana Pohlman, Keith Moore, and others. Instructions to complete and score the scale are included throughout the document. ACN appreciates that Dr. James Leckman, Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale, has given us permission to share the scale here. We hope it will be helpful to parents. Click here to view and print the scale.

A new scale for parents to rate the severity of obsessive compulsive symptoms and 11 associated neuropsychiatric symptoms (i.e., anxiety, moodiness, sleep disturbance) is in the development phase and available for use. The current scale is based on the clinical experience of doctors Susan Swedo, Miroslav Kovacevic, Beth Latimer, and James Leckman, with the help of parents Diana Pohlman, Keith Moore, and others. Instructions to complete and score the scale are included throughout the document. ACN appreciates that Dr. James Leckman, Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale, has given us permission to share the scale here. We hope it will be helpful to parents. Click here to view and print the scale.