Caryn

Mary, It should have helped by now, in my opinion. I am guessing there is a trigger somewhere that could be causing this. With our son's corn allergy, for example, we have to be very careful with our vit supps (as most have corn in them, as do most meds). We never saw a great improvement on Bonnies. At the time when we used them we were not on his specific IgG diet. Bonnies helped relieve some of the biggies and helped with his mood tremendously, but it wasn't until after we went gluten and corn free that we saw him really improve. You may or may not be dealing with allergies. Congestion, dark circles, frequent urination, teeth grinding, food cravings, lack of appetite-- these could be signs of a food intolerance. After much reading on the Pandas folks comments, it seems like these symptoms are discussed there frequently, too. Caryn

Vanessa, Ditto on Tami's thoughts as far as food allergies go. It took a good nine months for us to see an improvement in my son and much of that is due to my learning about his severe corn allergies and all the foods that corn manifests itself in. (Like powdered sugar, dusted on cheeses, sprayed on fresh fruits, included in toothpastes, in vegetable glycerins (vanilla flavoring), as an ingredient in most citric acid, and as a food substance for xanthan gum.) You may not be dealing with a food allergy, but if you are you may have to get pretty strict for a while until the immune system calms down. My son can now tolerate minimal doses of corn byproducts without a reaction but at his worst he was very reactive to the slightest dose of anything. I used to feel that if the wind blew up the corn fields near our house that he would tic. Not so anymore. It is that 'bucket theory" again. Definitely rule out the strep. Also read up on the metals issues. In our case that wasn't a factor (save the copper issue). Vitamin D deficiency is a biggie and can lead to an immune system problem so it is good you found that out and are treating for it. Magnesium is great, as Chemar says, but tryptophan may also be missing component as you are doing dairy free. I read about that a while back and it clicked with me. We now supplement with it and my son is doing fantastic. Caryn

We were told two weeks by the folks at Alcat. My Celiac forum group says one month for gluten. We tested negative to milk allergy on the IgG and we were off dairy for about a year before the test. I reintroduced dairy for about two weeks prior and he still tested negative to dairy. I believe dairy is problematic for him and so we only give it with enzymes and rarely. I don't let him have it but only a couple of times a week at the most in small doses.

Hey dut, I think you are going to love this-- I did a little google search as the subject seem fascinating. Couldn't find anything at all but mayo clinic's general "congestion of the sinuses" theory. Then I widened my criteria.... To include.... Are you ready? Veterinary practice! And I found something that pretty much agrees with the premise. http://books.google.com/books?id=OyxGEbjY4...oogle.com/books (page 446) Okay, children are not horses, so read this and do with it what you wish. Found it interesting. Perhaps there is a human study somewhere?

CP, We buy brown rice tortillas in bulk from our Celiac store and I freeze them. The brand is Food for Life. Marci, the owner of the store gives me a discount for buying a case of twelve. They are the only tortillas that are corn free. We have made chips from them and use them to make quesadillas. They break easily and can't be bent to make a taco. As you probably know, gluten is the protein found in wheat that acts as a 'glue' (thus the name GLUten). Some folks don't produce enzymes that can break down the gluten properly and so it causes digestive and neurological complications when eaten as a staple food for an extended period of time. The gluten is also what makes the tortilla hold together so well and bendable. Milk also has a protein, casein, that does the same but also can be difficult to digest (30% of Celiacs can't digest milk protein either). My celiac group moderator posted this link for a thin, pliable gluten free wrap, but it is made with Pamela's mix which has milk in it. http://glutenfreediscoveries.blogspot.com/...wrap-bread.html Bread from Anna is a good mix that folks could use to make tortillas (bean mix, no milk or gluten or corn or soy). I have never done it as I haven't bought a tortilla maker. I agree that a gluten free diet doesn't work for everyone (you really need to know if your family is genetically susceptible), but I have also come to believe that by itself it doesn't work either. I just want to mention this for folks reading this for the first time and unfamiliar with all of this. We do organic, additive free, corn-free, soy-free and dairy reduced, too. Tigger has a varied diet and does eat minimal dairy now with enzymes (but he never tested intolerant to it). We use a lot of goat kefir and yogurt, but occasionally I let him have a gluten free pizza with cheese. We eat a lot of fresh fruit and veggies. I make a lot of soups, and use nut-based flours a lot. It makes it easier when you've got a kid who isn't a picky eater and one that gladly eats protein and doesn't crave carbs. Tigger is my best eater at the moment. I am attributing it to full day kindy. He eats a big breakfast, more than half his lunch, and then is starving for dinner. Yesterday he told me he likes all of my dinners, even the ones that don't taste too good. I know what you mean about varied diet. I did a bit of research a while back because I noticed he began to have a salicylate sensitivity on top of everything else. I learned a few things--- too much B6 over the long haul can cause that. Also, avoiding milk (and not eating turkey, etc...) can cause hyperactivity too due to a lack of dietary tryptophan. Yes, so avoiding certain foods can lead to other problems, even when your intention is to 'cure'. Many of us don't have dietary advice from a nutritionist, so I just want to put this out there as food for thought. Excuse the very bad pun!!!! What matters most is finding what works and sticking to it. Caryn

Cheri talks about making a magnesium lotion with your favorite moisturizer. I like that idea better than putting the salt in the tub. (Less waste). You could bath her then put the lotion with the magnesium on her afterwards. We put magnesium in our son's juice in the morning and also with a lotion at night. Just my two cents.

http://rheumatology.oxfordjournals.org/cgi.../full/38/10/978 Conclusions. Hepatitis B vaccine might be followed by various rheumatic conditions and might trigger the onset of underlying inflammatory or autoimmune rheumatic diseases. However, a causal relationship between hepatitis B vaccination and the observed rheumatic manifestations cannot be easily established. Further epidemiological studies are needed to establish whether hepatitis B vaccination is associated or not with an incidence of rheumatic disorders higher than normal. Geeze, Kim-- If this is true then my son may have contracted the tic disorder because of his celiac-- http://www.pedrheumonlinejournal.org/April/reviewarti.htm He did get the series of Hep Vaxes, the third of which he got the same time as his varicella, about a month before he began his sniffing tic at age 3 1/2. We do not consider ourselves PANDAS, but this certainly does beg the question for folks dealing with PANDAS. It could be an underlying factor for some. Our son, thankfully, never got as sick as what we have read about in SC or PANDAS, especially when reading cases in places like WeMove.org. He also resolved his condition when we changed his diet, but that took about six months and was a slow process of healing. I do believe that the neuro problems are related to the gut in mysterious ways. Just a pity there isn't a one-size-fits-all cure for tics. Thanks for the info. Very fascinating. BTW, I know a few Celiacs that had hep vaxs and never titered properly afterwards, so this study is right on the money as far as I'm concerned. Strange, isn't it? I think kids should be screened for celiac gene at birth much like PKU screening. So simple, and could stop the progression of a whole slew of autoimmune disorders. Maybe someday. I know I put my youngest on a gluten free diet and refrained from vaxing him after Tigger's dx. He is by far the healthiest of the three boys. Hm. Makes you wonder.....

Greg, I will preface by saying we do not have a Pandas child. I do agree with Kim that you should look at a variety of factors that may be contributing to the condition. Have you gotten in touch with a Dan doctor? (Defeat Autism Now)--- they would have experience in the kinds of testing required for a holistic view of things, especially if you don't live in the proximity of a PANDAS expert. Aside from the obvious strep trigger, you will want to test for heavy metal toxicity, food allergies/intolerances, presence of candida, and an overall CBC. There may be digestive issues that are related to the underlying problem. Super bugs are becoming a real problem in our generation, and strep is one of them. We saw our pediatrician, an eye doctor, a naturopath, a pediatric neurologist and none helped us like the Dan Doctor did. Test, test, test. Each child who tics has different underlying triggers. I believe as Kim does, that there can be multiple triggers. It would also be beneficial to get an idea of the extended family's inherited health issues. What runs in your family, your wife's? This may also help point to possible answers or at the very least, give you ideas of what to test for. All the best-- Caryn

I think we are more educated now, for one thing, so kids are getting identified. Look at the increase in Autism, for example. It used to be 1 in what was it? 1,000? Now its, what, 100? When I look back at my childhood I had a lot of the same digestive symptoms that my son had. I also had a histamine problem and the standard treatment was oral allergy tablets when it got bad and antibiotics when I got infected. But my mom cooked dinner every night and we hardly ate out (70s, times were tough). We ate whole foods and drank either milk or water (mostly water, juice cost too much.) I never knew what pop tasted like until probably junior high. Seriously. Not because my parents were into healthy eating, because the cost of a case of Coke. I think our food supply has gotten worse in the last 40 years, and this is causing folks to eat a diet much higher in acidic foods. We also eat a lot of restaurant fare and junk foods as snacks. The highly acidic stuff is less nutritious and can cause infections, etc.... to keep cropping up. Also, I think the genetically modified stuff is a problem too-- wheat now has a much higher gluten content then it once did. And of course we have become the corn nation too, since the sixties. Then there's the whole theory that a less than healthy mother will produce an unwell child.... so generationally, if this trend continues there should be more Autism in 20 years than there is now--- Just musings.

I got this from my local POCHA group and wanted to share. I made a post on my blog about it for anyone that wants to read the details. Basically, you print out a sign that shows you have an allergy friendly house for trick or treaters on Halloween. Send this info to all you know. The more people that get this info the more participants we have on Halloween in our neighborhoods!!!! --Their post includes candies to include for kids with no dairy, gluten, soy, or eggs. They include candies that have artificial colors, flavors and preservatives. I hope their list gets expanded for kids with cerebral allergies, like ours, but this is a brand new organization and needs as much support as possible! Check it out. I hope everyone gets involved. http://healthy-family.org/caryn/877

Do you have a lot of mercury fillings in your teeth?

I stumbled on this site looking for gluten free info relating to tics and neuro issues. I was amazed at how long she has been doing this and how well documented she is. Her son is now in fourth grade (dxd at age 2). I believe that the PANDAS is secondary to the autism dx. I am not sure that she was dealing with the PANDAS from the start or if she was and didn't realize it until much later? She also talks about Lyme disease too. I just notice that she was able to ease up on the diet but still has to be gluten free after all these years. You can get lost in that blog though. Here is an index page that chronicles what she did specifically: http://www.hiddenrecovery.com/2008/04/inte...n-overview.html I posted a comment and she responded the same day. I'm sure she would answer your questions if you asked her.

Sorry, Here's the original article I found: http://hiddenrecovery.blogspot.com/2007/10...or-my-kids.html

When under stress ds sleeps less, about 10 hours. When he wasn't on his special diet he slept only 7 or 8 hours. Last summer he had a growth spurt and slept 12 hrs a day (also had no stress). We limit computer in evenings and get him into bed early. We allow him to wind down for about 30-45 minutes in his room. He reads a lot and plays quietly. Then we tuck him in, pillow talk with him and turn out the lights. This seems to work in getting him to fall asleep by 8:30-9 every night. He wakes around 7:20. If he stayed up to 10:30 he would still wake at 7, so I know exactly what you mean.

Kim, Funny, you and I are following the same thing. There's been a lot of news this last week on D. Probably because we are heading into winter. I saw the article that states kids need 400 IU a day, now, too. Suzanne Somers talks a lot about D in her new book. It is supposed to have anti cancer aspects among other things. I just finished a post on it after being part of a long conversation on D in my celiac support group. It is especially important for parents using a dairy free diet to be up on all the D research. It is also important for PANDAS folks to look into the D issue as well as most of my research shows that a lack of D can lead to autoimmune disorders. I even found an article on Celiac.com that poses the question of a D deficiency being one of a few underlying factors that lead to early onset of celiac in toddlers (our case over here). Anyway, I'm glad you brought it up. Here's my post that includes my research. Anyone is welcome to comment with additional links beneath the post if they find more info and want to share. The slide show video was very informative, if you have time (Doctor Holick). It is about thirty minutes. I was sent the link by a friend on another list. My browser didn't play it well in sync but I was still able to hear the audio perfectly. The main gist of his research really debunks the myth that vitamin D toxicity is likely with 10,000 IU a day. Now I have no intention of trying out his theory myself, especially without a doctor's advice, but he does prove that vitamin D supplements are important for folks and safe in modest doses, especially during cold, winter months and in northerly climates where there is less exposure. Caryn http://healthy-family.org/caryn/811

I really enjoyed this blog. Lots of info in here to glean. http://hiddenrecovery.blogspot.com/

Got this in my inbox and wanted to share : The Invisible Mother...... It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously, not. No one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? & Can you open this? Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.' One night, a group of us were having dinner, celebrating the return of a friend from England . Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe . I wasn't exactly sure why she' d given it to me until I read her inscription: 'To Charlotte , with admiration for the greatness of what you are building when no one sees.' In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything. A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.' I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.' At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride. I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree. When I really think about it, I don't want my daughter to tell the friend she's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want her to want to come home. And then, if there is anything more to say to her friend, to add, 'you're going to love it there.' As mothers, we are building great cathedrals. We cannot see if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women. Great Job, MOM!

Faith, Have you ever tried tryptophan? I got Suzanne Somers new book and in one chapter the interviewed doc talked about different body types and one was a seratonin type and another GABA. Don't have the book in front of me right now as I am cooking in the kitchen I will do a little digging on that later. We used to use GABA but now use tryptophan. Our son has NO symptoms right now at all, mood wise, tic-wise, even his handwriting is great. We are doing cod liver oil too. But I have to research more on the seratonin vs GABA types..... Anyone else with info jump in. I will come back to this tonight or tomorrow... Caryn

Check out this link. Scroll down to http://mindd.org/serendipity/archives.php/107-Disorders.html This foundation talks about underlying causes of immune dysfunction and gut-brain connections. There is no reference to PANDAS or tics, specifically.

Michelle, Have you seen a regression since starting table food? In our case our son was an early crawler but was a very late walker (almost 15 mos). Enterolabs does a genetic test that costs $150 and looks for gluten intolerant genes and not specifically celiac, which makes sense to me, as there are only 2 of the 9 gluten intolerant genes associated with celiac. Not testing positive for celiac does not rule out issues with gluten, it just rules out celiac. Our middle guy will never get celiac but we still keep him gluten free like Tigger because he is prone to infections otherwise. Every time we give in and let him go off the plantation he ends up with some kind of respiratory issue and subsequent ear infection. Caryn BTW-- if you have a non celiac gluten intolerant child enzymes may be a good option--

Toe walking and apraxia are loosely related to gluten intolerance. Did you say your son tested gluten intolerant a while back? I have a friend going through some similar stuff right now. Our middle guy was tested and has two gluten intolerant genes, but not the celiac one my oldest has. This trait runs in families.

Mary! I feel so bad for your ds and dh, but oh my gosh, can I relate! I could so see that happening over here w/ my dh-- When our son is doing fantastic (as now) he develops the 'well is he really that allergic' mentality. It always takes an infraction to remind him why we are doing this. So glad to have a place like this to come to.... Makes me feel so normal when I hear stories like yours! Thanks for sharing. I'm sure this episode will keep him on the straight and narrow until at least Christmas this time--- Well, hopefully longer, right? Caryn ah, men.... They just can't cope at all without the women in their lives!

Indigo, What kind of allergies did the doctor test for? Speech issues can be related to food allergy/intolerance issues as well. Our son had speech issues as well (couldn't pronounce "C's" and "R's" and "F's" and a slight stutter that we were told to 'wait' on much like Michelle was because our son was also only 4 at the time. We had a few motor skill issues that I was always keeping watch on, things that concerned me from my special education teaching days. For instance, my son had a 'crossing the midline' issue. He had trouble pedaling a bike (didn't learn that until this year-- at 5 1/2), had severe handwriting issues (although he is considered gifted and learned to read before 4 yrs old), had pronunciation issues, and visual processing issues. His coordination was off as well. We saw major improvements in these things after we found out he is Celiac too and changed his diet. The changes didn't happen overnight but just on the issue of handwriting alone the improvements are remarkable. And I can confidently say that it was the diet more than anything because he was not actively practicing his handwriting as he has only just now entered kindergarten. We've been on the diet now for over 1 1/2 years. If you haven't got adequate titers and cultures to prove that in your case it is indeed cut and dry PANDAS I would highly suggest you get further testing to rule out other causes as well. Don't overlook other options. Check out terms like developmental apraxia of speech, gluten ataxia. You will find info on many different forums that discuss these issues, especially on Autism forums. For certain susceptible folks gluten is a neurotoxin. Many folks that use a GFCF diet get positive results. We aren't on one. Our diet is specific to an IgG intolerance test we took. I personally found these success claims to be true in our case as well. In addition to improved coordination skills and handwriting skills our son also has better concentration. He is doing great in school and is not in need of supports for a disability-- speech is age appropriate as is handwriting and gross motor skills. We do use supplements as part of our regime (which I believe helps as well). He's a different kid now than he was at onset, and he has been stable since about five months into the gluten free diet. We don't see wax and wanes unless there is accidental ingestion of an allergen or his immune system is under attack, and then the symptoms are ever so slight in comparison to his onset of symptoms. Look into it. Caryn

We do that and use a cast iron pan.

In our case our son was never fully vaxed and never received either the MMR or the flu shot. When we ran his metals testing he was not high in any metals either, except copper, which was extremely high.... and his iron was low..... A perfect, huh? except when you consider gluten sensitive enteropathy.... They all tic for different reasons. In our case the vaccines he got prior to 3 yr old preschool were the catalyst, but the diseased state of his body was already there, and had been for quite some time. The improper diet coupled with the vaccines caused what I believe to be the 'perfect storm' in his case. We never did more than one vax at a time (some were combos). He received his first vax at age 6 mos and last at age 3 1/2. I am not 100% against vaxes and may try again when he is older.... or not. Certain ones I think are good to get if he doesn't contract the disease by a certain age. He has an uncle that was sterilized by Measles when he contracted it at 18. Right now he is doing fantastic and completely symptom free, so I am always optimistic when things are good!