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.

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.

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

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

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

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

Thank you very much Shelia for hosting this invaluable forum, adding the new PANS label, and upgrading the site. I'd like to remind everyone that Swedo's 2012 updated paper: From PANDAS to PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) clearly states in figure 1 that "Lyme, mycoplasma, and others?" are in the same infectious triggers category as Group A Streptococci (PANDAS).
 
 
 
http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf
 
Lately there seems to be less strep only PANS children and it is great that our resources can be grouped together now which will help us reach our goal of healing our kids.

I would also ask that the respect work both ways - for those of us who are not dealing with lyme, respect should be shown for our decisions/approach as it relates to how or why we have ruled it out without judgement.

LLM - I tried to use the "Like This" feature but was told I had "reached my quota of positive votes for the day" (eventhough it's the first attempt at hitting like!). Not a good start to postiivity!!!
 
But I would like to riterate your point about using phrases "in our experience", "something to think about", etc... it's something I always try to live by!! I'll also add that if I'm going to insert a differing opinion, especially one that may be "controversial" - I'll preface it with something like "some my not agree", or "this might not be a popular response" to highlight that I am not trying to be negative - just offering a different point of view. I feel it has gone a long way to helping keep discussions civil.
 
And ditton on the FB group - we're all just trying to hlep our kids out! Disagreement can be healthy, as long as it's repsectful!!!

Couldn't agree more. I think it's fine for one or two posts about lyme & co. especially to a newbie or to someone who posts about symptoms that are less than traditional pandas (e.g. drenching night sweats that could be babesia and isn't common to Pandas and perhaps a parent doesn't have that info yet). But we aren't here to diagnose or "convert" others. Throwing out ideas to explore is different than badgering and tone of post is critical to the health of this community.
 
I think it's important we self-police and if you see a thread taking a negative turn, I hope everyone feels comfortable speaking up and respectfully reminding us to get back on point. Would hope to see "some things to consider consider," "in my experience," "maybe" and not "should," must," "definitely"... Same would go to PMs - if a parent chooses not to pursue your thoughts in a public thread, please don't continue to badger in a PM.
 
I have strong feelings about certain topics within Pandas based on personal experiences. Sometimes I try to insert an "opposite" view for balance but if I ever come across as too negative or disrespectful, I'd hope that someone would let me know (in a kind way). I belong to a FB group that struggles with the same issue. For the most part, there's tolerance but unfortunately, some forget to rein in their passions. Let's let this pull us together and not apart.