Caryn

Cancer sores (gum boils, mouth ulcers) are a sign of immune deficiency. You have lowered immunity. It is viral and points to probable nutrient deficiencies and the presence of stress. Prior to the pyroluria dx and finding out about genetic celiac, cancer sores were quite common in our house too. There is a definite imbalance there if it is constantly reoccurring. I believe in addition to low magnesium stores it has also been tied to iron. I know that is a common symptom for a celiac prior to diagnosis and gluten free diet. Try taking some immune boosting supps and see if it helps lessen the duration.

EAmom, Read the dissertation. It calls PANDAS into question in many regards as a stand alone dx. Much of the data is PANDAS specific in the 171 page document. It can't hurt to read it, even if you unequivocally find yourself in disagreement with it. It is an eye opener to say the least. I highly encourage you to do the food intolerance testing and the OAT testing to see if there isn't a correlation there that you are unaware of. For example, anorexia nervosa has been clinically tied to celiac disease. I also found one study that linked it to OCD. There are many documents that point to schizophrenia and celiac to the point where it is no longer contested. There is also a condition termed 'silent celiac' in which the person has no symptomology at all but still has flattening of the villi upon biopsy and very high antibodies. I am certainly not suggesting that your daughter has celiac, but you cannot assume she does not have issues with yeast, bacteria, or food without proper lab testing to either confirm or disprove your theory. In our instance with our son, tics were also the last symptom to present. He had a host of digestive issues prior to that and behavioral issues too. Antibiotics are used to suppress the immune system. They do not heal it. They mask underlying problems through the act of suppression. That is why long term antibiotics are used to abate the symptoms. The IVIG study I referred to is a classic reason why you need to READ THIS STUDY. They discussed the very fact that the IVIG worked with the PANDAS kids short term, but NOT long term. This was Pat's whole point in her previous post and in her experience with her daughter. It doesn't appear to be a very good long term solution. The problem continues to resurface when this protocol is used in isolation. And let's face it, IVIG is costly. Caryn

EAmom, Have you done an OAT test on your PANDAS child? What is your treatment protocol besides long term antibiotics? I am just curious. We did pyroluria testing two years ago, as many of you know. The doctors found our son positive and we have since learned that it is hereditary and other family members have it. We got in touch with a wonderful doctor who is a worldwide expert in the field and he has personally contacted me on several occasions in how to properly treat this condition. He helps our family doctor to work with us and we have had tremendous success treating our son through these means. Our protocol includes an allergy specific diet that is low sugar, organic as possible, non-chemical, and fortified with specific vitamins and minerals based on lab test results. We have learned that our son's condition causes low glutathione levels in addition to low B5, B6, C, Magnesium, and zinc. This, coupled with his gluten intolerance, created the 'perfect storm' during his toddler years-- leaky gut that further depleted nutrient stores and led to brain-related symptoms. I have read Pat's recent post that now she believes her daughter has PITANDS rather than PANDAS. As most of you know, our son tested negative on strep titers 2 1/2 yrs ago and so we never pursued a PANDAS dx even though originally we might have based on his symptoms, the onset of his disease, and various other factors, including much advice we were being given by other parents who had been there. At that time I was really, truly, frightened and my son had several behaviors that were antisocial to say the least. He was: biting his brother, neighbor kids, playmates changing clothes incessantly after each trip to the toilet, up to six times a day had insomnia so bad he slept at most 7 hours a night had tics so bad he needed to stay home from school for two weeks had very poor weight gain had inappropriate laughing while being reprimanded at school, so bad that the teacher thought we should consider removing him from the class had very poor eating habits, to the point where he only ate about six things, all of which we later learned he was pretty much allergic to he had daily rage attacks, to the point where he would get physical with kids/adults, etc... had episodes of inconsolable crying, to the point where he would make ME cry issues with light sensitivity and screens I was told he had ADHD, that he did not have friends in preschool, that he needed more discipline, less discipline, more encouragement, less toys, more time and affection, less T.V. time, etc., etc., etc...... We were living a nightmare to say the least. My kid was chronically getting infections of all kinds-- croup, double ear infections, sinus infections, inexplicable rashes, eczema, strange smelling stools, stools with undigested food, etc.... He had dark circles under his eyes and a big pot belly that was hard to the touch. He was extremely irritable at times and then terribly remorseful afterward. He was so unhappy. He used to tell me that he hated himself. I got to the point where I didn't go places with him anymore because he was so unpredictable. I was afraid of when and where the next tantrum would come from. The kicker came when he pushed a kid down on the tile floor in the bathroom at school because he didn't flush his toilet. This was when we took him out of school for two weeks. The child I took out of school for two weeks 2 1/2 yrs ago no longer exists today. My son has NONE of the above symptoms. He is level headed, calm, peaceful, happy. He reads above his grade level, has friends he plays with regularly-- kids who call to come over, is on sports teams, and is a leader at school that others look up to. He is certainly not perfect, but his sense of humor is an indicator that he has regained his sense of self. He also no longer has tics. I read a long thesis about tics and Tourette Syndrome about a year ago: "Is Gilles de la Tourette’s Syndrome an Autoimmune Disease?" by Pieter Hoekstra. It is 171 pages and really is a MUST read for anyone pursuing a PANDAS dx and looking for a treatment protocol for their child. There is a whole chapter devoted to IVIG. We never did antibiotic treatment for our son, or IVIG treatment. One could argue that our son fits the criteria for "PITANDS" as well, based on his onset symptoms and history of chronic infections/illnesses. What Hoekstra argues is the fact that ALL folks with Tourette Syndrome have immune function problems. We went a completely different route than the 'protocol', if you will. So I offer up an alternative viewpoint for folks to ponder. The underlying conditions that are present at dx, in many cases, may mean that the treatment protocol has to be a life long commitment. From what I have learned over time, kids with leaky gut may regress back to the disease state if the original genetic markers (ie: gluten intolerance) are ignored and a return to the original diet and lifestyle resume. In some cases it could take 5-7 years, but the original disease state will resume once adequate damage occurs.

My son has some but not all of the symptoms, too. Be sure to stay off of all vitamins and minerals at least 48 hours before the test if you take it. My son did have light sensitivity but doesn't anymore. Certainly not as severe as you describe. In my experience it is the zinc deficiency that makes the eyes sensitive to light. I could be wrong. High mauve requires high doses of zinc until the tissues are saturated and then the dose is lowered. It is dangerous for someone without mauve (pyroluria) to take large doses of zinc as it would be toxic for them. So we went through that process and then afterwards the light sensitivity seemed to dissipate. He is now on a much lower maintenance dose of zinc. If you have a lot of anxiety and you are pyroluric you will have greater symptoms because the oxidative stress from higher cortisol levels will cause you to deplete your stores faster. So during times of stress a pyroluric may find that they need to alter their supps. Most doctors don't know much about mauve. Let me know if you do get the test done and if it is positive.

Maybe you should test yourself for pyroluria. It is a simple urine test and will reveal whether or not you have severe deficiencies in B6, mag and zinc due to oxidative stress. http://healthy-family.org/caryn/63 In the mean time maybe get some polarizing sun glasses to wear while at work? It might help take the edge off.

I have a thread on that. Benadryl Dye free capsules is our go to. http://healthy-family.org/forum/index.php/topic,278.0.html Also look into immunological stuff to help as well. B complex with B5, fish oil, Vit D deficiency, and dysbiosis may lead to bad allergies. Low glutathionine levels are an indicator. So high antioxidant foods should help. Probiotics are also key. Thankfully Tigger doesn't appear to have bad allergies this year so far.

Lori, You may want to start with an OAT test through Great Plains Laboratories. Dr. Shaw will actually be speaking at a conference on Tics, Tourettes, OCD and Depression on May 23-24 in Fort Worth/Dallas area. I believe you may still be able to register. There will be tons of info on natural treatments and many guest speakers. I'm going! The OAT test will at least let you know if there is candida or bacterial overgrowth problems. Caryn Our story is here: http://healthy-family.org/caryn/289 and here: http://healthy-family.org/caryn/704

We used to use goat milk kefir exclusively but our son never tested intolerant to cow's milk so now we are on the cheaper cow-based stuff. We still avoid cow milk altogether and only give him goat milk to drink or bake with goat milk/kefir, whichever is available (as the goat milk is easier to digest). I bought a yogurt maker a while back and just used the Meyenberg goat milk containers to make the kefir in. This saved us time as Whole foods is about 40 minute drive. We only removed cow based dairy products for leaky gut symptoms (all the literature tells you to do that until the gut is healed) and have since reintroduced it very successfully again (after about a year off of it. We used to do heavy mega vitamins, especially B6, to stop the ticcing symptoms and OCD-like symptoms (he was never officially dxd OCD, just had some minor symptoms of it). This was when he was very reactive and was struggling with the leaky gut issues. Now we do a B-complex which includes elevated b6, b5, and decent amount of b12. We do zinc, and mag w/o the calcium (due to dx for pyroluria). The calcium is in his diet now with the dairy, so I am satisfied with that. We have recently started NAC too. We stop the D in the spring and summer months and will pick it up again in November. We do Borage oil and vit. E (regular RDA dose). I agree on the methylation issues. I also agree that all these things do repair over a very long, slow healing process when the internal mechanisms are dealt with. We never did the b12 shots, but I have read that they are necessary for some with tic disorders. I avoid C like the plague due to Tigger's corn allergy. Even the supposed corn free ones seemed to cause tics a few months back. Now that he is much better I may try C again. I just feed him foods high in C regularly, but I may try that next time he gets sniffly. You mentioned about a low gluten diet-- I am sure that gluten intolerance isn't the case in all kids with tics/Pandas. Leaky gut, however, most certainly could be. It seems like anyone who tests for it finds dysbiosis, whatever the cause may be. BTW, your theory about kefir may be true. Recent studies have linked one particular strain of bacteria to helping heal damage caused by gluten in celiacs as well as preventing future damage when the test subjects ingest gluten. I'm not in a rush to introduce gluten again with my son, but it is nice to know that there is a kefir available to help him minimize the damage should he fall off the bandwagon and cheat sometime. We are committed to Kefir for life too!

Pat, I agree 110%. We've been doing kefir daily for almost 1 1/2 yrs now. We add it to his breakfast 'shake' which includes the B-complex, zinc, mag, and fresh fruits. He drinks that down with his fish oil supps and borage oil caps. We've been on a specific diet and supp plan for over 2 years now and our son has NO symptoms of anything, finally. No tics, no ADHD, no OCD-like tendancies. He is pleasant, happy, has friends at school, sleeps well, plays sports, is enjoying his childhood. I think-- and I've yet to research this so I have no proof-- I think the probiotics are helping to eliminate the many allergies he originally had. His diet is much more varied now than it was when he was tested with 17 allergies. We also do digestive enzymes (no longer daily but when he eats rich foods-- hard to digest), and we still keep him on a low sugar diet (honey in lieu of refined sugar, sometimes using evaporated cane juice.) It is a lifestyle change, really. We all eat differently now because of this experience. I don't have testing to prove that he had either candida or clostridia. I can attest to the fact that his symptoms did seem to worsen before they got better. But anything beyond that would be circumstantial and leading. We deal with allergies here and not PANDAS (negative on the titers), but I agree that when the gut was healed my son's symptoms stopped. I recently (since December) started vit. D supps and noticed a huge difference in him this winter as far as overall immune health. He did not get sick at all this winter. (First time since he was born-- he was a chronically infected kid-- ear infections, croup, sinus infections, eczema, etc.....) Thanks for sharing, Pat.

I was a chronic bedwetter with major kidney/bladder problems as a child. Bedwetting is tied to urinary tract infections and bladder infections big time, especially if the urine smells bad, is discolored, has floating clouds in it. Kidney infections cause flushing and fevers (my M.O. as a kid-- I would run fevers up to 105 and need to be rushed to the hospital). They found out when I was six that I had a bilateral reflex to the kidney and after surgery I was fine, but still prone to occasional infections and still had occasional bedwetting episodes until I was 8. No more fevers though. As an adult I learned I was gluten intolerant, and possibly undiagnosed Celiac. (I went gluten free before getting testing done, so no dx unless I want to damage myself again to get it. My son with tics also had bedwetting issues as well, and still does on occasion. There can be a whole host of reasons for it and not just one. When I get lax on his diet and let him have offending foods to excess, especially milk or corn, I could almost guarantee he will we himself as he sleeps very deeply and soundly. Bedwetting in and of itself should not alarm parents. I think it is fairly common in young children, especially if it is in the family. It can be associated with food allergies/intolerances. But frequent urination, foul smelling urine, discolored urine, and painful elimination are all signs of infection. I was on long term antibiotics as a child for my kidney issues and my mother will tell you that although it was necessary it wasn't great for my immune system. I developed many allergies as a kid and looked like a bean pole for many years. My mother had lots of natural remedies that she used to help my renal system. Drinking lots of liquids is one thing. You may need antibiotics to clear the infection and then you need to instill natural remedies to keep the body healthy as renal issues tend to resurface regularly. It may just be a 'weak' area of the body for infection. Look into dietary habits that you can change, and supplements that will support the renal system and keep it healthy. Read about proper body PH. Flushing the system regularly is the best way to keep the kidney, bladder, and UT healthy. This means drinking a lot of water. Cranberry juice is loaded with sugar. Not a good idea in my book. Cranberry supplements would be better. Not going to heal an already present infection, though. For natural antibiotic you could drink grapefruit seed extract (a few drops in a glass of water) several times a day, take oreganol (liquid or capsule)-- this would be preventative, to ward off future infections. Go see the doctor. I would look for an underlying cause if this is common with your child-- dietary causes (candida, sugars), immune related issues (allergies), and possibly physical issues (in my case I needed surgery).

Too much magnesium will cause soft stools.

A new study has been released which is in agreement with Dr. Rodney Ford's philosophy-- That an ounce of prevention is worth a pound of cure-- Gluten intolerance is regressive and a gluten free diet is not only beneficial for the non-celiac gluten intolerant person but also preventative.

Pat, We use Oreganol over here in capsule form. As long as they can swallow a small capsule (and they DON'T bite it) there is no bad taste involved. I do not give it daily (we are not a PANDAS family) but I do give it when the kids around my kids get sick or they have a hint of something coming on. It has worked beautifully this winter (combined with the Vit D supps which was another new thing I started). No one in our house got sick or needed antibiotics this year. Caryn --BTW, we tried the NOW brand and the Oreganol. My husband used it to fight off a sinus infection. We agreed that the Oreganol was better and well worth the extra money. I gave three doses a day with each meal when there was exposure at home or at school. The cure rate for my husband was longer than if he had gotten antibiotics but shorter than if he had suffered on without any treatment.

Have you done an OAT test on your daughter through Great Plains? Is she on any kind of supplements? Enzymes? I started a thread on over the counter allergy meds a while ago. We use Benadryl dye free as needed but allergies aren't much of a problem for ds this year as compared to years passed. http://healthy-family.org/forum/index.php/topic,278.0.html Seasonal allergies can be a sign of other underlying issues-- there may be a chronic vitamin-mineral deficiency, gut dysbiosis, or food intolerance that is contributing to the allergy problem. The right diet and supps can really help reduce symptoms if they are obnoxiously unbearable.

B6 is good and in many cases elevated levels are necessary to help alleviate symptoms. But lab testing is vital to determining what amount is necessary. There is such a thing as too much B6 even though it is water soluble. If you google it you will see that. I have a 6 yr old and when I started on this path he was barely 4 and very small for his age. I was giving him high doses without lab testing in the beginning because that is what I was reading should be done. My son has a condition called pyroluria and so B6 supps are a vital part of his regime. All I am saying is that there needs to be a balance in the supps and doctor advice involved or you may end up creating an imbalance somewhere else. Also, if you are doing an elimination diet or a GFCF diet or any other 'gut healing' regime there is a good chance that once the gut heals the high doses are going to be too much and will need to be adjusted. Our doc told us as much when he advised us about how to manage pyroluria effectively. Some, not all with tics, also find they have pyroluria.

Betty, What are your B6 doses like? Are they high? We saw a decrease in salicylate sensitivity when we reduced the B6. I read about that a long time ago and then personally saw an improvement when we reduced the B6. Caryn

Kim, Read Mercola's article. He talks about the 1918 flu leading to strep infections that killed people. It wasn't the flu that caused their deaths, but the strep. So movement disorders would probably fit that theory as we know today about antibiotics and PANDAS.

Colleen, If they are both dilated together then I think it might have to do with too much dopamine. (Which is also a tic trigger). I remember reading that somewhere. You might want to google that. You want to lower dopamine and raise seratonin. Are the dilated pupils in conjunction with poor sleeping and increased ticcing? Then I would think it was a dopamine issue. If one is dilated then there is a more serious biological issue. Caryn

If he's got strep you've got to do it. Don't worry about the tics. From my experience, and from a corn allergy standpoint, antibiotics could be tic triggers because they most likely contain wheat or corn. I found one antibiotic that was gluten and corn free and we used it successfully for Tigger 1 1/2 yrs ago when he got a double ear infection. So I would say give it and if you see a spike in tics and you know allergies are an issue, then call and ask for another type of antibiotic. We used Amoxil. I wrote a thread on it for future reference because I had to do quite a bit of research on the antibiotics. http://healthy-family.org/forum/index.php/topic,198.0.html Give probiotics four hours after each dose of antibiotics. Give the full course of antibiotics. Eat a healthy diet for at least two weeks after the antibiotics that is sugar free, low starch, and high in probiotics. He should be just fine. I was really freaked out too and so afraid of what might happen but everything turned out just fine. Be sure to get plenty of vitamin D, E, C, and antioxidants too.

It's nap time, so I've got a few minutes. I learned that my son's celiac caused leaky gut issues and this generally leads to problems digesting the proteins found in wheat, milk, corn, soy. We never stopped feeding him meats, but with the corn allergy being so bad we did limit chicken and did go toward only grass fed beef for a while. We ate a lot of fish, salmon, etc.... He eats chicken now (all natural but not necessarily organic) and regular corn-fed beef (not a lot and usually organic). When we gave up the dairy I noticed his attention was worse and he was a bit hyper. Didn't know if it was hidden corn because the corn allergy did that to him too. Then I read an article about GFCF diet and lack of dietary tryptophan causing ADHD symptoms. So we began supplementing with 5HTP and he improved. We now use dairy in the diet in moderation and no longer need the tryptophan supps. But too much meat in the diet will cause dopamine levels to rise and this will cause lower seratonin (which is what you want to increase to alleviate tics and restore 'calmness'. Once my son's gut healed we pretty much went back to 'everything' in moderation except the corn, wheat, and gluten. These he can't have at all or he will just re-destroy his gut. We also do the Feingold diet to keep the toxic load low. He's doing great. Knock on wood. Not sick once this year from school and no ticcing. Yes, to answer your question, too much protein in the diet is not good for the tics based on our experience. Same goes for dairy. Too much is bad, I don't care if the kid is allergic to milk or not. Increased calcium reduces the magnesium absorption. Best to try to maintain a balance. We do kefir every day still. I switch up the brands. He gets about 1/4 cup in the morning and then takes his magnesium after dinner. He might get the odd dinner with dairy but not daily. Maybe once a week. Once in a while I will let him have ice cream too. He is taking all of this in stride now-- two years later. So for all those reading this and at the beginning of their leaky gut struggles--- there is hope! Just stick to the routine religiously to heal the gut. Oh, and we are still using enzymes with dairy or any other 'rich' foods. He does not take enzymes with every meal. My new kick is baking with sunflower seeds, flax seeds, and pumpkin seeds to boost nutritional content and magnesium levels naturally.

Dr. Mercola just wrote a 10 page article about the swine flu. He had so many hits it temporarily crashed his server. I finally got it up. The gist is-- This is a bunch of hype. The CDC will push for massive vaccinations to protect folks from it just like they did in the 70s. He points out that there were more deaths in the 70s due to the swine flu vax than to the actual flu. Something to ponder. He also writes a nice history of the pandemic in 1918 and how studies have shown that it was not the flu that killed the folks but strep. Today we have antibiotics and can treat it safely and effectively. So I say, go about your business and turn off the news. The media is just trying to freak everyone out. Take your vitamins, drink your fluids, call your doctor if you get sick but don't worry beyond that. Here's his article: http://articles.mercola.com/sites/articles.../Swine-Flu.aspx

CP, Yes, too much protein-- meat-- and it throws the balance of seratonin off. I will explain more later later when I have time about the tryptophan, etc..... (from what we discovered ourselves. Caryn

We broke the skin with the wheatabix cereal bar by rubbing vigorously. If you just place the item on the arm without scratching the skin nothing will happen. I did it with my husband as a funny joke. We have been gluten free for 2 years in the house and he is a known cheater. (The wheatabix was stashed in the upper cabinet and I didn't even know it was there.) I joked about doing a scratch test if we had wheat in the house and low and behold he fessed up. He broke out in hives and needed benadryl spray to stop the itching on the scratched skin area. We are still planning on doing an allergy test. The doctor didn't think IgE was worth it as he said my husband probably already knows what bothers him. We will probably do an IgG. Hubby just took the GREAT PLAINS OAT test. It was very interesting. He is very healthy but needs to boost glutathionine in his body. So we will supp. with NAC now, just like Carolyn.N always talks about. BTW, I'm not sure a small child would sit well through an at home scratch test. It was not comfortable for hubby. Oh, and now he is sticking to the GF diet. LOL.

My husband has been refinishing our basement and has had an increase in allergies as a result. I just wanted to share what he's been doing to help alleviate his symptoms. 1. He eats gluten free (he is gluten intolerant according to Enterolabs testing) 2. He has been taking B-complex with adequate B5 (also known as Pantothenic Acid) It has been proven to help with allergies because it helps the adrenals. It is also good for teeth grinding. 3. He has been using a nettipot every night. 4. He has reduced sugar intake and milk intake (He uses a drop of goat milk in his tea and that is about it). 5. We have bought all new pillows to help ease night congestion. 6. He showers at night instead of morning to remove pollens before bed. 7. He's also taking magnesium to help him sleep at night. My husband has always had seasonal allergies but this year he really developed major symptoms when he had to gut out our flooded basement. He does have a deviated septum and gets easily congested. It is allergy season so I thought I would post this. My husband says the the single most relieving treatment is the nettipot followed by the B5. He has been gluten freeish on and off over the last couple of years but never 100% until recently when the allergies got so bad. He has not done allergy testing yet, but we did an unofficial scratch test on his arm using Wheatabix cereal and he broke out in hives and needed Benadryl spray to stop the itching. He is noticing that certain foods are causing the roof of his mouth to itch (walnuts) so we are also watching for that. He recently took the OAT test through Great Plains and one supplement they suggested was NAC. Very interesting! He will begin treatment with it soon and I will let you all know if it helps alleviate his allergies.

Yes. My son has what are considered 'cerebral allergies'. Have you ever read Doris Rapp? (Is This Your Child?). We are not a Pandas family. We deal with allergies that cause our son's tics. He is doing great now and has been virtually tic free for almost two years. We have been doing a special organic, all natural, allergy avoidance diet now for 2 years. Dysbiosis and malabsorption can cause allergies to crop up. Also, allergies are a symptom of an unhealthy immune system. It is possible that changing the diet could lessen or even eliminate chronic strep and other bacterial infections. It has to do with balancing the body's PH levels. If you keep the body in proper PH by avoiding certain foods you create an 'unhealthy' environment for the bacteria and it cannot thrive. Caryn Our story is here: http://healthy-family.org/caryn/289 and here: http://healthy-family.org/caryn/704