pmoreno

You're right - it's all in the wording. Some call it neuro-immune dysfunction and some call it autoimmune encephalitis which is all very acceptable. I think the reason some doctors have trouble with the PANDAS label is because not all children who have these autoimmune reactions react specifically to strep (some react to viruses only). Therefore, they are reluctant to put kids on long-term antibiotics if it is not warranted. I think there are a number of parents on this board with kids who react to different antigens (some to strep only, some to viruses only, some to strep & viruses and other bacteria). Sometimes I think we need to actually change the label from PANDAS to neuro-immune dysfunction because that would encompass all. The thing is that PANDAS is a little bit better understood because the most research has been done in the early days by NIMH. Pat

Hi Pat I had a hard time getting anyone to respond to this question myself.I had one person who swore to this 1 person.There is a DO in NJ where i live DR neunbrenner(sp) Hes in Edison his web site is full of info But I couldnt get any person to tell me anything . The drs who sell them love them Its hard .Also I do neurofeedback with Danny (I havent done it in 2 weeks )I think he got more anxious after.He would fall asleep everytime I wanted to give him a rest to see how he would do. I will try it again this summer .Ps my insurance did cover the feedback. Let me know more about the keifer and where to get it how it works (in simple terms) Melanie Hi Melanie: Did you say he got more anxious after having the neurofeedback or just when he stopped having it? How long did you use it? Yes, the people who have an interest in HBOT (sell, rent, etc.) are more likely to give positive reviews, but I wanted to hear both sides of the story, especially from people who have used it long-term to see if they felt it was worth it. The kefir (I feel goat milk is the best), but you can get cow's milk too - probably more common, but more commercial - would have to look at all the ingrediets. They say even the cow milk kefir can be used by those who are sensitive to casein because the bacteria and enzymes in the kefir actually break down casein, so that many people can eventually tolerate casein in their diet again after some long term kefir use (3-4 months). The beneficial bacteria sets up colonies in the gut (whereas when you eat yogurt its only good for a couple of days and then it's gone). It has been thought to correct gut imbalance - by the large number of good bacteria crowding out the bad bacteria and yeast. It would take about 4 months to really get there, but you can see results within a couple of weeks. It's been thought that some of the aggressive behavior or spaciness is brought on by overgrowth of yeast or clostridia and then when you kill those with hardline drugs like flagyl or diflucan they can get a die-off reaction which looks about the same as the behavior you saw originally. The kefir does the same thing but slower and you don't see the die-off reaction as much. If you add s.boulardii for a while (1-2 months), it can give it an extra boost. Besides all that it contains a ton of B-vitamins and all the minerals they need, along with protein (essentially, kefir is a complete food). You should really google it and get all the facts. Pat

Hi, I generally post on the PANDAS board, but I think there might be more of you here on this board that have used HBOT with your children and am curious how many of you have used it and what the response has been. I have read that it can be helpful for brain inflammation which is something that autism, PANDAS and other neuro-immune disorders have in common. Some articles I've read indicate that there are studies that have shown a high percentage of success with decreasing brain inflammation, but then I have read some things where parents have invested an unbelievable amount of money and done hundreds of sessions with no real change. I'd like to get some answers from real people before I decide to try this with my daughter. She has actually improved quite a bit these last few weeks since I've gotten her gut bacteria/yeast under control with kefir, but she still has a ways to go with cognitive impairment as a result of all this. Am thinking of doing HBOT and maybe neurofeedback. thanks, Pat

Hi, About the supps - 5-htp can cause nightmares, inositol doesn't always work, B-complex is always good for calming nerves, Omega 3 is definitely effective for inflammation, taurine is actually good for decreasing brain activity (as in repetetive or intrusive thoughts). Zinc is good as immune support. S. Boulardii is a good probiotic when yeast overgrowth or bacterial overgrowth has been proven, but is not necessary to continue after about 2-3 months. Kefir is good at establishing colonies of beneficial bacteria that would help keep gut in balance. Also there is a supp called A&I from New Beginnings that has N-acetylcholine, along with a couple of other things that is supposed to be very effective for brain inflammation. Pat

Mom MD: I am so happy for you that you found a specialist that knows what she isdoing. I'm convinced that the PEX will do just as you say and will be very effective. The only thing that concerns me is that once he is recovered from this episode, that he may at some point in the future have another episode triggered either by strep that manages to evade the abx, or by some other trigger such as a virus. The underlying reason for the autoimmune response doesn't necessarily go away with the PEX - it gets rid of the offending antibodies but it doesn't change the integrity of the immune system as far as future responses go. In order to treat the immune dysregulation, I think you would have to consider other types of treatments - I don't know that I would want my child on antibiotics from now until adulthood - especially when you can't be sure that this will definitively keep the strep away. You may have read other posts on here from parents who have had their children on long term antibiotics and will still get exacerbations at various times. Pat

if you're asking about the kefir, it's fine to take a full glass in the morning and then do two or three a day with meals (since it has enzymes that help with digestion). Seems to be the same for kids or adults.

Emma, I am an oncology nurse and most of our patients on our floor have C.dif - it's because they are on frequent antibiotics and their absolute neutraphil count is also low. The reason that they have people glove and gown is not usually to protect the family members or the staff that enter the room - it's to avoid having it spread to the other patients on the floor whose immune systems are suppressed. With PANDAS kids the immune system is overactive (not underactive). All of us have C. dif in our gut at all times. The reason that we're not sick from it is because usually it's in balance with the other bacteria present in the gut. The problem comes when you take antibiotics which kill off not only pathogens, but the good bacteria as well. That leaves an open space ready to be occupied by opportunistic bacteria (and c.dif just happens to be the one that really proliferates in a situation like that - along with yeast). As long as your daughter's white blood cells are within a normal range, I wouldn't worry about her "catching" anything from these patients. The only problem she might encounter is if she's on long-term antibiotics and she starts having an overgrowth of her own c-dif (this would have absolutely nothing to do with other c-dif positive people she comes in contact with). If her gut bacteria is out of balance, you can either have an organic acid test done to confirm this, which would cost you a couple of hundred dollars, or you could assume that she has the problem and start giving her kefir on a daily basis which would regulate everything within a month or two. By the way, yogurt is not quite as effective. Another good probiotic to give along with that (only necessary during the time of an exacerbation) is s. boulardii. Pat

Myrose & Suzan: In answer to the question about mixing it with other supplements - It doesn't interact or interfere with other supplements, but eventually as it improves digestion (since it has enzymes), it actually helps absorption so that any extra vitamins you give might be more than they need. After a few months of taking it, most people really don't need any extra supplements because it is so rich in vitamins & minerals (particularly B vitamins), in tryptophan (which converts to serotonin) and helps with general calmness and better sleep. The beneficial bacteria establish themselves and colonize the gut (they adhere to the walls) and thereby help heal leaky gut syndrome and makes it unnecessary to take additional probiotics. You can get commercial kefir (made from cow's milk) at almost any store, but even though it is thought to be OK for use by lactose intolerant individuals (due to the fact that lactose is broken down by kefir), I still am not crazy about the commercial brands due to the other additives and potentially inferior cultures. Also, some of the ones I've tried are kind of thick and kids might not like that real well. I get the goat milk kefir at Whole Foods. I know that this chain of health food stores are all over the country - if there isn't one near you, I'm sure there must be other health food stores in your area. The one that I use is very smooth and creamy - no lumps or curds. If you mix it with enough fresh fruit (you can even sweeten it substantially with agave syrup or honey) to the point where even picky eaters would like it. Pat (By the way - we are at 3 weeks now of consistently good moods with Gaby - just a very few occasional odd questions like "so, it's not OK to have negative thoughts?", just asked for reassurance. but absolutely no outbursts)

sorry, think there was an error in the link - will try again. http://www.sciencedirect.com/science?_ob=A...49c46a7cc16cb0f

Hello all, I found that link that I had mentioned re: the study done on kefir's ability to fight intracellular pathogens (maybe intracellular strep?) read for yourself and let me know what you think. http://www.sciencedirect.com/science?_ob=A...&_fmt=&

yes, this was one of Gaby's things too a year and a half ago. It luckily only lasted about 4 days (as many of her odd behaviors would last for a while and then disappear to be replaced by others). It was kind of like she would complain that she had to spit and she went through towels and towels every day for several days. She would say that she hated it and couldn't stop spitting. This repeated one time with the second episode but not as severe and lasted only one day. Pat

On another forum I read some interesting posts regarding the use of elderberries in preventing and treating flu. Some people use it prophylactically on a regular basis, and some just use it when they catch the flu. It has been clinically proven to shorten the length of symptoms from 6 down to 2 days. I looked it up on wikipedia - here is the link and it, indeed, does state there that it has been useful for treating both influenza A and B. From Wikipedia, the free encyclopedia Jump to: navigation, search Elder or Elderberry European Black Elder (Sambucus nigra) European Black Elder (Sambucus nigra) Scientific classification Kingdom: Plantae (unranked): Angiosperms (unranked): Eudicots (unranked): Asterids Order: Dipsacales Family: Adoxaceae Genus: Sambucus Sambucus (elder or elderberry) is a genus of between 5 and 30 species of shrubs or small trees, formerly placed in the honeysuckle family, Caprifoliaceae, but now shown by genetic evidence to be correctly classified in the moschatel family, Adoxaceae. Two of its species are herbaceous. The genus is native in temperate-to-subtropical regions of both the Northern Hemisphere and the Southern Hemisphere. It is more widespread in the Northern Hemisphere; its Southern Hemisphere occurrence is restricted to parts of Australasia and South America. The leaves are pinnate with 5–9 leaflets (rarely 3 or 11). Each leaf is 5–30 cm long, and the leaflets have serrated margins. They bear large clusters of small white or cream-coloured flowers in late spring; these are followed by clusters of small black, blue-black, or red berries (rarely yellow or white). Contents [hide] * 1 Species groups * 2 Uses * 3 Ecology * 4 Medicinal Use * 5 Folklore * 6 Gallery * 7 References * 8 External links [edit] Species groups Sambucus canadensis showing the complex branching of the inflorescence. * The common elder complex is variously treated as a single species Sambucus nigra found in the warmer parts of Europe and North America with several regional varieties or subspecies, or else as a group of several similar species. The flowers are in flat corymbs, and the berries are black to glaucous blue; they are larger shrubs, reaching 5–8 m tall, occasionally small trees up to 15 m tall and with a stem diameter of up to 30–60 cm. o Sambucus australis (Southern Elder; temperate eastern South America) o Sambucus canadensis (American Elder; eastern North America; with blue-black berries) o Sambucus cerulea (syn. S. caerulea, S. glauca; Blueberry Elder; western North America; with blue berries) o Sambucus javanica (Chinese Elder; southeastern Asia) o Sambucus mexicana (Mexican Elder; Mexico and Central America; with blue-black berries) o Sambucus nigra (Elder or Black Elder; Europe and western Asia; with black berries) o Sambucus lanceolata (Madeira Elder; Madeira Island; with black berries) o Sambucus palmensis (Canary Islands Elder; Canary Islands; with black berries) o Sambucus peruviana (Peruvian Elder; northwest South America; with black berries) o Sambucus simpsonii (Florida Elder; southeastern United States; with blue-black berries) o Sambucus peruviana (Andean Elder; northern South America; with blue-black berries) o Sambucus velutina (Velvet Elder; southwestern North America; with blue-black berries) Elderberry cultivation in Austria * The Blackberry Elder Sambucus melanocarpa of western North America is intermediate between the preceding and next groups. The flowers are in rounded panicles, but the berries are black; it is a small shrub, rarely exceeding 3–4 m tall. Some botanists include it in the red-berried elder group. * The red-berried elder complex is variously treated as a single species Sambucus racemosa found throughout the colder parts of the Northern Hemisphere with several regional varieties or subspecies, or else as a group of several similar species. The flowers are in rounded panicles, and the berries are bright red; they are smaller shrubs, rarely exceeding 3–4 m tall. o Sambucus callicarpa (Pacific Coast Red Elder; west coast of North America) o Sambucus chinensis (Chinese Red Elder; eastern Asia, in mountains) o Sambucus latipinna (Korean Red Elder; Korea, southeast Siberia) o Sambucus microbotrys (Mountain Red Elder; southwest North America, in mountains) o Sambucus pubens (American Red Elder; northern North America) o Sambucus racemosa (European Red Elder or Red-berried Elder; northern Europe, northwest Asia) o Sambucus sieboldiana (Japanese Red Elder; Japan and Korea) o Sambucus tigranii (Caucasus Red Elder; southwest Asia, in mountains) o Sambucus williamsii (North China Red Elder; northeast Asia) * The Australian elder group comprises two species from Australasia. The flowers are in rounded panicles, and the berries white or yellow; they are shrubs growing to 3 m high. o Sambucus australasica (Yellow Elder; New Guinea, eastern Australia) o Sambucus gaudichaudiana (Australian Elder or White Elder; shady areas of south eastern Australia) * The dwarf elders are, by contrast to the other species, herbaceous plants, producing new stems each year from a perennial root system; they grow to 1.5–2 m tall, each stem terminating in a large flat umbel which matures into a dense cluster of glossy berries. o Sambucus adnata (Asian Dwarf Elder; Himalaya and eastern Asia; berries red) o Sambucus ebulus (European Dwarf Elder; central and southern Europe, northwest Africa and southwest Asia; berries black) Norwegian: Elder = Hyll [edit] Uses Ripening elderberries. The flowers of Sambucus nigra are used to produce elderflower liqueur. The French and Central Europeans (Austrians, Croatians), but particularly the Swiss (the foremost experts of Sambucus cultivation and culinary applications) are known for their elderflower syrup, most commonly made from an extract of elderflower blossoms, which can be added into pancake (palatchinken) mix instead of blueberries. Most Balkan counties (Serbia, Romania, Macedonia) will use a similar method to make a syrup which is diluted with water and used as a drink. Based on this syrup, Fanta marketed a soft drink variety called "Shokata" which was sold in 15 countries worldwide. In the United States, this French elderflower syrup is used to make elderflower marshmallows. Wines and cordials may be produced from the berries. Berries can be used to produce marmalade. Ornamental varieties of Sambucus are grown in gardens. In Germany the umbels of the elderberry are batter coated, fried and then served as a dessert or a sweet lunch with a sugar and cinnamon topping. Hollowed elderberry twigs have traditionally been used as spiles to tap maple trees for syrup[1]. [edit] Ecology The berries are a very valuable food resource for many birds. Elders are used as food plants by the larvae of some Lepidoptera species including Brown-tail, Buff Ermine, Dot Moth, Emperor Moth, The Engrailed, Swallow-tailed Moth and The V-pug. The crushed foliage and immature fruit have a strong fetid smell. Valley elderberry longhorn beetle in California are very often found around red or blue elderberry bushes. Females lay their eggs on the bark. Larvae hatch and burrow into the stems. Dead elder wood is the preferred habitat of the mushroom Auricularia auricula-judae, also known as "Judas' ear fungus". Pith wood is a term for heart wood of any type of tree. Pith from the Elder tree (not sure which species is best) is used by watchmakers to clean tools prior to working on the fine parts of mechanical watches. [edit] Medicinal Use In a placebo-controlled, double-blind study, Elderberry was shown to be effective for treating Influenza B. People using the Elderberry extract recovered much faster than those only on a placebo. This is partially due to the fact that Elderberry inhibits neuraminidase, the enzyme used by the virus to spread infection to host cells.[2] A small study published five years ago showed that 93% of flu patients given extract were completely symptom-free within two days; those taking a placebo recovered in about six days. This current study shows that, indeed, it works for type A flu, reports lead researcher Erling Thom, with the University of Oslo in Norway. Thom's findings were presented at the 15th Annual Conference on Antiviral Research. The study has been accepted for publication in the Journal of International Medical Research. The study involved 60 patients who had been suffering with flu symptoms for 48 hours or less; 90% were infected with the A strain of the virus, 10% were infected with type B. Half the group took 15 milliliters of extract or and the other group took a placebo four times a day for five days. Patients in the extract group had "pronounced improvements" in flu symptoms after three days: Nearly 90% of patients had complete cure within two to three days. Also, the extract group had no drowsiness, the downside of many flu treatments. The placebo group didn't recover until at least day six; they also took more painkillers and nasal sprays. It's likely that antioxidants called flavonoids -- which are contained in the extract -- stimulate the immune system, writes Thom. Also, other compounds in elderberry, called anthocyanins, have an anti-inflammatory effect; this could explain the effect on aches, pains, and fever. Elderberry extract could be an "efficient and safe treatment" for flu symptoms in otherwise healthy people and for those with compromised immune systems, such as the elderly, Thom adds. Russell Greenfield, MD, a leading practitioner of integrative medicine and medical director of Carolinas Integrative Health, advocates treating flu with black elderberry, he says in a news release. "It can be given to children and adults, and with no known side effects or negative interactions," he says. "But don't expect grandma's elderberry jam" to ease flu symptoms like body aches, cough, and fever, he warns. "Extract is the only black elderberry preparation shown effective in clinical studies." [edit] Folklore The Elder Tree was supposed to ward off evil influence and give protection from witches, a popular belief held in some cultures. If an elder tree was cut down, a spirit known as the Elder Mother would be released and take her revenge. The tree could only safely be cut while chanting a rhyme to the Elder Mother.[3] [edit] Gallery This section looks like an image gallery. Wikipedia is not a collection of images, and policy discourages galleries. Please help by moving freely licensed images to Wikimedia Commons, possibly creating a gallery of the same name if one does not already exist. See Wikipedia's guide to writing better articles for further suggestions. Black Elder (Sambucus nigra) American Elders in flower, Pamplico, South Carolina, USA American Elder flowers Elderberry fruit heads, Yauhannah, South Carolina, USA Red-berried Elder (Sambucus racemosa) Ripe elderberries in August [edit] References 1. ^ Medve, Richard J. et al. Edible Wild Plants of Pennsylvania and Neighboring States Penn State Press, 1990, ISBN 9780271006901, p.161 2. ^ Kelly, Greg and D'Adamo, Peter. "Blood Groups and Influenza" (2000-2009). 3. ^ Howard, Michael. Traditional Folk Remedies (Century, 1987); pp. 134-5 * Vedel, H., & Lange, J. (1960). Trees and Bushes in Wood and Hedgerow. Methuen & Co Ltd. * http://www.dadamo.com/science_bloodgroups_influenza.htm [edit] External links Sister project Wikimedia Commons has media related to: Sambucus * Elderberry, elderflower, and why they matter (2008) * Elder bush info and recipes from the BBC “Guide to Life, the Universe, and Everything” * Mrs. M. Grieve, A Modern Herbal (first published in1931) * Germplasm Resources Information Network: Sambucus * National Institute of Health — Medline page on Sambucus nigra L. * Sureaux Création d’une collection botanique (in French) Retrieved from "http://en.wikipedia.org/wiki/Sambucus" Categories: Sambucus | Berries | Medicinal plants Views * Article * Discussion * Edit this page * History Personal tools * Log in / create account Navigation * Main page * Contents * Featured content * Current events * Random article Search Interaction * About Wikipedia * Community portal * Recent changes * Contact Wikipedia * Donate to Wikipedia * Help Toolbox * What links here * Related changes * Upload file * Special pages * Printable version * Permanent link * Cite this page Languages * Български * Català * Dansk * Deutsch * Español * Esperanto * Français * Hornjoserbsce * Hrvatski * Íslenska * Italiano * ქართული * Lietuvių * Magyar * Nederlands * 日本語 * Nnapulitano * Norsk (bokmål) * Norsk (nynorsk) * Polski * Português * Română * Runa Simi * Русский * Simple English * Slovenščina * Svenska * Türkçe * Українська * Walon * 中文 Powered by MediaWiki Wikimedia Foundation * This page was last modified on 21 May 2009, at 19:18 (UTC). * All text is available under the terms of the GNU Free Documentation License. (See Copyrights for details.) Wikipedia® is a registered

I've looked at this a little more closely and the only concern I have is that they tend to use a lot more meds rather than a natural approach. I think that the idea behind it is good and it is very close to what many of us here on this site have said about healing the gut. I'm just not sure I want to use SSRI's and some of the anti-fungals. There's such a fine line between helping and making things worse. I feel a little safer with the natural things (like substituting inositol for SSRI's for instance). What I am glad to see, though, is that there seems to be more and more activity with people from all different areas researching this problem (neuro-immune dysfunction) and trying various approaches. Eventually somebody is going to come up with something that really works.

Jena, it sounds like you've been giving a lot of different things for a long time, and even probiotics if you give too much of one kind can cause some kind of imbalance. The balance has to be as close to what is naturally found in the gut and from what I've read, the bacteria found in food stuffs is superior to that which they take in capsule form. This is why I'm so stuck on this kefir thing - and because goat milk is casein free, it makes sense to use that. I'm going to look for that study I read about Kefir bacteria's ability to subdue intracellular pathogens and I'll post it when I find it. Pat

I, too, mix it in with a smoothie for breakfast. I usually use a good size glass of it and then add fresh pineapple, a really ripe banana and rice milk, plus a half of an avocado (avocado has some wonderful benefits). Then I might give her another glass straight in the afternoon. I also use just the plain unflavored - she doesn't mind it, although it is sour. I've read that some people drink it with every meal, so I don't think that you can take too much, it's just that it's pretty expensive and so that would limit us from drinking it all day long. As far as establishing a good colony of bacteria, it takes several months. Although I have seen some really good changes in Gaby, ( her tutor said that within this last week she has seen some real improvements in her concentration level when reading), I don't expect that it will do major work on her immune system that fast - it will probably take several months.Pat

Check this out: http://www.nids.net/nidsbackground.htm Even mainstream (non DAN docs) are getting on the bandwagon now and are realizing what's going on. Apparently NIDS encompasses PANDAS, PITANDS, autism, ADD and a myriad of other autoimmune diseases that people have always called "developmental issues". Although this group (NIDS proponents) seem to look more to pharmaceutical cures rather than natural - they are discovering the same thing that many of us here already know - that the immune dysregulation is what causes the problem and, therefore, in my opinion - the answer is to fix the place that houses the immune system (the GUT). Since we've started the kefir, along with other broad spectrum probiotics, Gaby is now on day 12 of very normal behaviors (minor irritability very occasionally, but no outbursts). Even other people have remarked how mellow she is these days - and how happy.

In a recent post by Chemar she cites an article which talks about the importance of serotonin and it states that 90% is produced in the gut. No wonder that if the gut is not functioning properly, that it decreases it's production - which leads to the sleep disorders, aggressive behaviors, emotional lability that we see in our kids. On the box of the kefir grains that I ordered it states that beneficial flora promotes the conversion of tryptophan into serotonin. It also helps the absorption of nutrients and vitamins. It's possible that prior to giving the kefir to Gaby, her body wasn't even utilizing all the extra vitamins I was giving her. There was a study done in 2008 at the University of Taiwan on effects of kefir on cytokine production and what I found particularly interesting is this: that kefir influenced the secretion of pro-inflammatory cytokines TNF-a and IL-6 through TLF-2 which promotes cell-mediated immune response against intracellular pathogenic infections. I'm wondering if that might mean that it could fight intracellular strep (which many antibiotics have trouble getting to)? By the way, since I've started all this about 3 weeks ago, Gaby is now on day 10 of a wonderful mood - smiling, happy, and the only odd behaviors I've seen during these few days where she has been congested with this cold is that she mentioned a couple of times seeing some spots in front of her eyes and a couple of days where she asked me once or twice for reassurance "so I'm not ugly?". Previously she had obsessed about that many times on a daily basis. I hope I'm not premature in saying that this is really working for her, but I'll keep you all posted. Pat

T.Mom - you're right - problem is the inflammation and if it's from strep or some other bacteria, then antibiotics should take care of it - nothing wrong with that. However, if the inflammation comes from a virus or a fungus (like yeast or parasites), then all the antibiotics in the world are not going to help that. If you're lucky enough to isolate the cause of inflammation - that you can prove it was strep and treat it with abx - then you get a good response. Otherwise, you're left to wonder which organism is causing the inflammation and you have to do trial and error. Sometimes it is strep, you treat with antibiotics - everything gets better for a while - then even on the antibiotics things get bad again. Parents think the antibiotics aren't working anymore & sometimes switch antibiotics. What could be happening is that if there was bacteria present initially the antibiotic did its work, you saw improvement in symptoms, but after a while the antibiotic itself caused some imbalance in the gut flora and the symptoms you saw later had to do with yeast overgrowth or clostridia overgrowth. I'm not saying - don't do antibiotics - if you have a proven infection, its necessary. I'm not saying - don't do IVIG - it can give you some immediate abatement of inflammation and symptoms. But, even while you're doing these things (and some parents can't afford the IVIG), why not try the easiest and simplest method for immune support (which would come from probiotics or kefir in particular). You mentioned something about - if food related - why wouldn't that have shown up earlier with your child. It may not be food related. The reason that some people have success with GF/CF diets is not always because their children were allergic to these foods in the first place. It's because once they have immune issues caused by something going on in the gut, they can have more problems with digesting foods that contain casein and gluten. You wouldn't necessarily know if your child has a GI problem unless you tested for it specifically. There are tests for leaky gut syndrome, for gluten & casein sensitivity (but when you test you can't have been off gluten & casein or it will come up negative anyway), tests for yeast or bacteria overgrowth. A lot of the kids that suddenly display PANDAs symptoms have had a pretty normal development prior to that. What is speculated is that there is some genetic predisposition for some GI disturbance that may lay dormant for some time until triggered - sometimes by a certain virus or bacteria or environmental factors. The trigger is probably different for many of the kids. I may be wrong, but I tend to think that what really set my daughter off the very first time is that she ate an overabundance of halloween candy (and I mean she ate a lot) in one night and it was one day later that she contracted the virus that started all this in motion. The candy contained a ton of refined sugar and it was probably too much for her system to process. I've read that more and more people (especially in developed nations like ours) that eat a lot of processed foods with lots of sugar, junk food, preservatives, artificial colors and flavors are having increasing problems with their immune systems. If you look at any of the third world countries, you most likely will not find any cases of Pandas and very few autoimmune diseases.

I know that there is some debate here about the difference in treating PANDAS, TS, OCD, PITANDS, etc. Certainly if you can prove that your child reacts to strep, it would help to start with antibiotics, but you can't continue that forever. The IVIG helps tremendously (short term) and may help some kids long term, but that hasn't been proven clinically and would be difficult to prove because there are so many other factors - ie., were bio-medical treatments used simultaneously, antibiotics, a decrease in exposure to strep, changes with age and hormone levels. It's really hard to isolate these factors. All of the above conditions are immune related and it makes sense that many different antigens (strep, viruses, other bacteria, yeast, environmental toxins, metals) can disrupt normal immune function and can cause an autoimmune response. IVIG can settle down an overactive immune response, but it may not always change what caused that abnormal response in the first place. As I've said before, 70% of the immune system is housed in the gut, and I believe you have to start there to make sure that everything is functioning well. I can only tell you what I've experienced with my daughter on a short term basis since I've started some of the pro-biotics and the kefir (hopefully I'll be able to report some positive changes in the long run). I can tell you this. She caught a cold yesterday. I gave her extra vitamin C (5,000mg) yesterday and today. Today she was congested and I saw some intrusive thoughts (but just a few). She is handling this much better than she would have in the past. I really attribute this to the probiotics & kefir - I think it's helping to modulate her immune system. Pat

Michele, you were asking me about brand names. The Omega 3's - I use one of the 2 most well known - either Nordic Naurals or Barleans (I think as long as they have been molecularly distilled - mercury & other toxins removed - they're OK) As far as probiotics go, the more different strains of bacteria present, the better they are because you don't want an imbalance. The body works best with a greater variety. I am giving the extra dose of the s.boulardii right now because of the yeast and clostridia, but after about 3 months when everything is completely colonized, I will stop giving that particular supplement. The product that I have found that contains a huge variety of probiotics, along with enzymes (which also help break down yeast & help with digestion) and a number of good green foods) is a powder called Essential Greens made by Mother Necessity. I had ordered it online from a website called autismcoach. You start out with a teaspoon a day & can go up to a tablespoon a day. Have to hide it in smoothies, strong juices or food. As far as the brand for s.boulardii, you can get any brand at a health food store - they're all fine. Just keep all probiotics in the fridge. The most important part is the kefir. I use both goat milk kefir (which can be used even by kids who are casein intolerant), it can be bought at places like Whole Foods or other health food stores and young coconut water kefir. If you are interested in how to make it, I wrote a detailed explanation on another post here (I think it was under the topic dealing with rages). You can also google it and get information on how to make it on-line. Most kids aren't crazy about the flavor, but I just add it in with fruit smoothies and they drink it right down - no problem. good luck. Pat

S.Boulardii is not a dairy product. The best kefir out there is non-dairy - its made from young coconut water. I do use it, but it is kind of a pain because you have to make it yourself - that's why I usually recommend the goat milk kefir - because you can buy it in a store and makes it easier for general use. The coconut kefir is made from the water of young coconuts (not the hairy brown ones). Most health food stores & some grocery stores will carry them. They are either green or many times they've had that outer covering removed and look like big white waxy candles. You punch a hole into them and drain the liquid (usually use 2 of them for a batch). You have to heat it to about 92 degrees which is skin temperature - either use a food thermometer or a clean finger to test. It can't be hot or cold - just skin temp. then you pour into a mason jar (should be about 2/3 full), add a packet of kefir starter grains, stir well, cover with tight lid and keep at 75 degrees. If your house is colder than that, put in an insulated container and leave alone for 48 hours. The liquid will be cloudy white with an odd semi-sour flavor. You only use about a tablespoon or 2 for the first week, then gradually use more - maximum about 1/4 cup a day (best used at bedtime). The flavor is odd, so it's best to mix it with another juice to hide it. After 3 days (you store kefir in fridge after it's done culturing), you can add about a 1/4 cup to another 2 new coconuts and you can keep doing this for 7 times before you have to start over with a new packet of kefir grains. Each time that you use the old batch of kefir as a starter, it takes less time to culture, so the second time might take 36 or less hours, then maybe 24 hours and finally a little more than 12 hours. There are a few places on the west coast that will sell coconut kefir, but it's extremely expensive and hard to get. That's why it just makes sense to make it yourself. You can order the grains on line from a number of different places - just google coconut kefir starter grains. good luck. Pat

EAMom - As far as the IVIG taking a year to take effect, I'm not so sure about that. You may remember that when she had it in October she had great results right away which lasted for at least a month. IVIG has a short half life. It only stays around in the body for about a month. So the immediate effects are that it immediately settles down the over-active immune system and cuts down on the inflammation. That's why they recommend doing it only for those kids who are in a current crisis because you will see results almost right away. What takes time is for the body to re-regulate the immune system and this sometimes happens spontaneously (as long as there are no new episodes which might require more IVIG). What takes so long is for all the neurons that have been damaged from the episode to heal and regenerate. That usually takes months up to a year. Sometimes the IVIG actually helps to re-regulate the immune system (that's what we're always hoping for), and sometimes it is just the body naturally getting to that point. What we have to do in the meantime is help the body to reach that point by giving those supplements that stimulate a healthy immune system. The glitches that we encounter along the way are often the yeast overgrowth and then die-off reactions (when they're treated) that we get from the antibiotics (and even if they're not on antibiotics, they often get yeast overgrowth just because their immune system is compromised). The behaviors that they have from yeast, or die-off so closely resemble the original pandas behaviors that it's hard to know whether you're having a new episode or what. That's the problem that I have had after IVIG - panicking every time there was a new onset of behaviors. After all this time and many organic acid tests, I have figured out what's really going on. I don't believe she's had any new episodes since the IVIG, she has just had a lot of yeast, clostridia, etc. Now that we're getting that under control with the probiotics & kefir, we're seeing some huge improvements. I'm praying that we have no new episodes in the future. Pat

Just to update everyone - it has been 6 days of bliss around here (with just one minor episode of irritability on Thursday evening) - other than that - no complaints of itching - lots of good moods - no repetitive questions or intrusive thoughts, no hitting, kicking, yelling or other aggressive or OCD behavior. I don't want to be premature about this, but this is the longest run of normal behavior that I can remember in a long time, and I'm sure it has to do with getting her yeast & other pathogens under control in her GUT with the probiotics and kefir. We're on a roll and I hope we stay there. Pat

I wanted to ask you, are you still on antibiotics? Since the IVIG in Oct? I know that for a while you had some good moments after the IVIG, just like we did - I'm wondering if the OCD he's experiencing could have something to do with yeast overgrowth from abx? If you've read my post about that, you probably know what I'm talking about. If you haven't tried it yet, why don't you try the probiotics I've mentioned in my post. Pat

It depends on what the raging is coming from. - If it's yeast overgrowth, then you try s.boulardii and kefir (They have to be on it for a few weeks to see results - but then they're dramatic). If it's for any other reason, a good vitamin B complex is fairly calming. Other than that, you try to predict what will set things off and avoid that and during the times of the worst rages you keep them home as much as possible. When you're in the midst of these, it's hard to imagine that they'll ever stop, but eventually they do. Pat