pmoreno

I think it needs to be changed for several reasons - one - it's true that it's earned a bad rep with the mainstream medical community. Many feel it doesn't exist or those that do feel it is extremely rare and your child couldn't possibly have it or there is no cure. Additionally, this is an autoimmune response that affects many children as a result of exposure to various antigens (not just strep). Therefore, it does have to be clear that this is something that causes encephalopathy regardless of the antigen. However, I do agree that an abrupt change would confuse those parents who are just coming to understand the nature of this disease. It might be good to use the two names in conjunction for a while with a / in between the two words.

Kim, thanks for your extensive research on this. I will definitely read this a little more thoroughly. From what I had read before, even though the natural killer cells are increased, there is a simultaneous process going on that modulates the immune response, and for that reason, it is felt that it could be effective against autoimmune responses. In any case, I will delve into it more with the help of the DAN perhaps. Otherwise, it may be that this would be especially helpful for those kids who react to viruses rather than those who react to strep (which there are a number of individuals on this forum, I believe). Keep me updated on any new info - I will do the same. thanks again, Pat

The new cocounut kefir product is healthy - we've tried it, but realistically does not have the same effect as kefir made from real kefir grains - you can look that up to see why (has to do with multiple strains of bacteria & yeast in actual kefir grains that are live and much more effective than the powder that they put in most commercial kefirs). I've discovered that the best way to do this is to buy the kefir grains on line (a one time cost of $20), then make it yourself and you just keep re-using the grains - they will eventually grow so much that you have to give them away. From the source that I bought them from I'm told you can use them on young coconut milk as well as dairy. If you do any of this, you really don't need to do probiotics - they're expensive and don't give the same quality of immune support as what you get from fermented foods. Besides you get such a wide spectrum of bacteria, that it really isn't necessary to add more with probiotics. The only reason to do that is if, for some reason, the child had a stubborn yeast infection (from on-going antibiotics), in which case it wouldn't hurt to give the s. boulardii probiotic during the time. As far as the epicor goes, even if we give that, I'll probably still give kefir - it has so many healthy ingredients, including all the minerals they need. Pat

I've checked a couple of different sites and it looks like you can get it for as little as $10 for a bottle of 30 500 mg caps. (which should last a month for a child or an adult). I think it was called Puritan's Pride or something like that where you buy 1 and get 1 free. (The cost is $19 but by getting one free it breaks down to $10 for each one). Anyway, I've read more about it and apparently a lot of people are actually taking the original product which was made as a supplement for animal feed (still the same product - a fermented form of brewer's yeast which is then dried), but when you buy it at a feed store, you can buy it in bulk and save a lot that way. The only thing is that when they change the name to epicor, they have to have it approved by the FDA (which is why it costs more), Otherwise, it's basically the same product - using non-genetically altered, no pesticides added dried, fermented yeast. I think they call that product Diamond V XPC. The beauty of it is that it does not overstimulate the immune system - it modulates it. They're doing a lot of research now for its effect on other autoimmune diseases like lupus, MS, etc. I do believe I am going to order it, but I'm going to check with a DAN doc as a final precaution before I do. Pat

Hello, (Worried Dad - hope you read this). I know that some of you feel like you have used all kinds of supplements and nothing seems to be effective. Gaby continues to do well & is catching up after almost 2 years of being in this "fog". I can't tell you how well she is socializing (after retreating in a corner whenever playmates would visit her & her twin sister in the past). Now she is initiating play with others and is completely appropriate. Her academics are improving tremendously. She is consistently in a good mood & has absolutely NO OCD tendencies left at all - no aggressive behavior - no crying or worrying, etc. I believe that her immune system has turned the corner. I think it has to do with the daily kefir that she drinks (or else it's pretty coincidental that since she started it, she gradually improved). It may not be the thing that works for all, but the key is to modulate the immune system - whether it's kefir, IVIG, or some other immune modulator. From what I can read here, some of these methods work for some kids and not for others. I guess if I had tried 99 things and they didn't work, I'd try one more just to see if that was the one. Even though Gaby seems completely recovered, I haven't let my guard down completely and I still keep my radar up for anything that is immune modulating (just in case). One thing that has caught my interest and I have followed any dialogue about it on other forums & where ever I hear about it, is EpiCor. It is simply baker's yeast- but specially fermented and dried and has been proven (scientifically) to modulate the immune system. (Google epicor yeast) to see exactly how it works. I have considered ordering some for Gaby - even though she is doing well, I feel that it can't hurt to give an extra boost and it would protect against some of the flus coming our way. It apparently works to "scotchguard" mucous membranes so that viruses, bacteria & pathological yeast aren't easily absorbed. I was reading on someone's post that their child continues to have problems with yeast overgrowth. Apparently that is a reaction to an imbalance in the normal gut flora, but this yeast product is supposed to be a prebiotic and restores normal gut flora, thereby cutting down on pathological yeast infestation. It's completely benign - natural - not a drug or herb - just a specially processed food. Anybody out there tried it yet? Would love to have some feedback from one of us. If not, I am thinking of trying & I'll keep you posted. Pat

Hello Manda, So sorry your child went through this. It brought back unpleasant memories. Gaby reacted pretty much the same way - headache all night after the 2nd day of IVIG - couldn't sleep - cried all night with the severity of the headache, vomited for hours. Fever. By the next day she was better - just slight headache, a little nausea, no more vomiting - no fever. It's a nightmare to go through and it's hard to know whether it's all worth it. Her motor tics did go away at that time, although I've seen other parents post that their tics either returned or never went away. The rest of her behaviors (extreme anxiety, sleeplessness, OCD, angry outbursts) didn't start going away until 6 months later, so I can't be sure I can credit IVIG with that. Generally it's effects wear off after one month or so. She has been doing well the last 5 months - had posted before about some of the immune support I was giving her & she seems to be getting her immune system in order these days. Pat

After a stomach virus, immune system is weakened - more susceptible to other things like strep. Oil of oregano definitely better than oil of olive leaf. Really works to get rid of flu symptoms & helps get rid of strep (and viruses). (it's the most potent natural antibiotic, anti-fungal & anti-viral) I'd be careful about using too much advil on a regular basis. It is a good anti-inflammatory, but too much can cause undue stress on the kidneys. Also, it can be a little rough on the digestive system besides.

This response may answer a couple of these questions. I know that some people want to stay away from dairy and even though goat milk does not contain casein and most kids tolerate it well, not all kids are willing to drink it, even if mixed with fruit in a smoothie. Someone asked if I make my own kefir. Actually I was making kefir for a while there with cultures that I ordered on line from a reputable company in Europe. I believe they were 6 envelopes for about $25.00 and you can reuse the cultures from what you make, so these six envelopes can last for months (if you keep them refrigerated). When you make your own kefir, the easiest way to make it is with young coconut milk (not the brown hard shelled ones). They are usually in the cool area with fruit (look like large white wax candles). I was doing it for a while, then got lazy and just buy the goat milk kefir. You can google how to make coconut milk kefir and there are many sites that give detailed instructions, including where to order the cultures. It doesn't really take that long to make it, just have to wait a long time for the cultures to grow. The advantage to using the coconut kefir is that you don't need to use much. You start out adding about 1 or 2 tablespoons to some juice and and maybe go up to 1/4 cup per day. It doesn't have a pleasant taste (in my opinion), so it would be good to mix it with a strong tasting juice, but as I said, you need such a small amt. that its easy to hide it in other juice I'm sure there are some good probiotic capsules out there, but I've heard that when you get the bacteria in a natural food form it seems to be more effective(because of the balance of various bacteria). For a while there before she started drinking a lot of kefir, I gave her a product that I thought was pretty good because it had a good balance of probiotics, along with some other nutritional benefits & it's made completely from food (dehydrated vegetables, sea vegetables, etc)It's called Essential Greens by Mother Necessity and I had ordered it on line from a supplier called Autism Coach. It's true that if you're on antibiotics you have to take the probiotics at opposite times (evening is supposed to be ideal for the probiotics because they sit in the gut longer (since there is no eating/drinking at night). Pat

I don't know how much Gaby would want to write in an e-mail - I think a complex topic like this would be hard for her to communicate about in writing, but she might want to talk about it over the phone - (she is also 9 and fairly well recovered at this point - if there are no setbacks around the corner). If you want to send me a personal message, you can give me your phone number or vice versa. Pat

Thank you for your kind comments. I will try to answer all questions in one post. I usually give Gaby one large glass of kefir (mixed with juice, fruit, honey-in a blender) in the morning. Sometimes a smaller one at night. She weighs about 70 lbs. I used to have her stay away from cow's milk completely - she used to have some stomach pains after drinking it. Now, after 5 months of the kefir, I believe it has helped to break down the casein in cow's milk so when she does drink it (which is not often), she doesn't complain of a stomach ache. Someone asked me about the oil of oregano - yes it is strong. If you take 3 drops and mix it with a tablespoon of fish oil, they can usually tolerate it, especially if they immediately chase it with some good tasting juice. I only give it if there are any symptoms of a cold or flu starting & I would only give it for 1 or 2 days. Diana, if you are reading this, I wanted to answer your post. I think most of the kids here have some form of encephalopathy. The difference is that some (like your son, I think) are true PANDAS reacting to strep only & truly needing the antibiotics while recovering with IVIG or other treatments. Other children (like my daughter) react to viruses only and some children react to both. Regardless, they all have the same symptoms - sleep disturbances, fears, OCD, rages, tics, sudden deterioration in academic & social skills, etc. When strep is the only trigger, the good news is that usually the antibiotics will hold symptoms at bay - with viruses being the trigger - antibiotics won't help & you're always at risk for catching something out there. On the other hand, its no fun having your child on long-term antibiotics & all the side effects that brings. As I've said before, the IVIG has been really helpful in most cases. I still think that the biggest problem for the kids is their very odd & unregulated immune system. Sometimes one IVIG treatment can do the trick, sometimes they need more. Not everyone can afford multiple treatments. So, as an alternative, I feel that whatever they can take to modulate their immune system (and strengthen it to avoid further episodes of strep or viruses), that's what we can give them. I think that the kefir has helped Gaby (unless it's purely coincidental that during these 5 months of taking it, she has not had any viral outbreaks & all symptoms have ground to a halt). But not all kids will willingly drink it and there are other things out there that have been proven to improve the immune system. One is called EpiCor - When you search for it - make sure you write EpiCor for the immune system (otherwise it comes up with something unrelated). Anyway, it has been researched and found to totally boost the immune system. If Gaby had not improved so dramatically, I would have found a way to try it. So thanks again for all the well wishes & good luck to all. I have been reading some of the posts from newer members and it breaks my heart that there are more who are going through this nightmare - the rages sound all too familiar. Pat

Hello all, Haven't posted for quite some time - we were out of the country most of the summer. For those who don't know us - Gaby was 7 1/2 when she had a virus (turned into an initial herpes simplex outbreak which then repeated itself almost every month thereafter).She developed typical PANDAS like symptoms of OCD, tics, sleep disorder, extreme anxiety, paranoia, visual hallucinations, decline in handwriting, math skills, reading, social skills, ability to dress herself, ate with fingers instead of fork (just to name a few). Her behavior had improved the summer before last for a few months, but with another viral outbreak, started all over again. We had IVIG last October which got rid of the tics, but all other behaviors hung on with January, February & March being the worst months. In April we started her on Kefir and she is still drinking it daily. It has now been over 5 months without a herpes outbreak (unbelievable). Last month I stopped all the vitamins & supplements that we had been doing for at least a year. The only other thing I do besides the kefir (since it has really boosted her immune system) is that if I detect the slightest sniffle I give a teaspoon of vitamin C powder diluted in small amt. of OJ (equivalent to about 5,000 mg) & by the next day she is usually fine (sometimes I have to give a second or third dose, but rarely). If she complains about a stomach ache or I suspect any kind of infection, I give 3 or 4 drops of oregano oil mixed with a tablespoon of any other oil (fish oil or olive oil - just to keep the oil of oregano from burning the throat - its strong). Gaby is about 98% herself now. No obsessive thoughts or questions. The only thing that remains is that she still gets a little more upset when provoked by her twin than she used to, but it's manageable. Since I can't cite any research studies that prove this - I can only say that since Gaby started drinking the goat milk kefir 5 months ago, she has not been sick and with that her behavior has gotten better & better. I can't say that she won't ever have this again - because who knows? I do know that this is the longest that she's gone since starting the symptoms of being close to her "normal" self. I tend to think that if the good microflora in the intestines are plentiful, this keeps the immune system functioning well - might help to ward off strep or viruses. Anyway, we're on a roll so let's keep our fingers crossed. Pat

At one point, I too, read this information with great interest, but something just didn't sound right to me - its very radical - to the extreme of people not leaving their house during the day to avoid the sun and drastically altering their diet to avoid vitamin D. I ran it by the DAN in Florida. Dr. Bradstreet's team is extremely knowledgeable about all protocols for autism (good or bad) and they confirmed what I suspected - this protocol is very radical and the founder is not qualified to make the assumptions that he is making, and not able to scientifically support them. Everything has been done over the internet and it is not very credible. Google vitamin D council and I think there should be good information supporting the use of vitamin D. I don't use it for my daughter during the summer, but it isn't a bad idea to use it in the winter - maybe 400 to 800 units. Pat

pardon the typo - its cumanda - not cumandia. Pat

I think that it's still fairly rare because it depends largely on the area in which you are living. However, if anyone does test positive for it, they have been fairly successful treating it with cumandia (I had mentioned this herb in another post - but you can google it along with lymes and it should give some information about how they are using it as a treatment). Pat

I've always said that oil of oregano is a cure-all for just about every virus, bacteria, fungus, etc. I've come across this other natural product called cumanda (google it to see what is being said here heard about it - I'm wondering how it compares to oil of oregano - they both seem to do the same thing - I'm just not sure which one is better. Pat

I am so sorry for you. It's sad that these children can't even be tolerated at church activities when they are ill. These poor kids who are ticcing constantly (completely against their will) and then to fell rejected on top of it. I have to say that my daughters tics were limited to more posturing, or forming her hands in certain positions over and over again. The IVIG did seem to get rid of that & we haven't seen any of that again. I do believe that the IVIG can get rid of a number of symptoms as the troublesome antibodies are diluted by the good antibodies of the IVIG. However, whatever is left behind may move to other receptor sites and sometimes you see new behaviors that you hadn't seen before. In general it does tone down a lot of the inflammatory response and you see some immediate results. What can happen later, though, is that if the child is exposed again to some antigen (whether strep, other bacteria, fungus or virus), there can be a new inflammatory response and everything can start all over. The ideal case scenario is that a child receives IVIG - it clears up the major symptoms, then they're on prophylactic antibiotics to prevent further strep infections and they recover (as long as you keep up with the yeast overgrowth from being on the antibiotics). The problem starts when strep is not the only antigen (or maybe not even an antigen) that causes the hyperimmune response. When your son came back from camp he had impetigo. While he was there he was likely exposed to any number of viruses and fungus - not only by his surroundings, but all the people he came in contact with. This, most likely, contributed to the new tic onset. I have found from personal experience with my daughter that natural antivirals and antifungals seem to be much more effective than anything else. Of all of them, I believe oil of oregano is the best. It's fairly strong, but if you add 3-4 drops to at least a tablespoon of any other oil to dilute and then chase it with some kind of juice (daily or better yet twice daily for at least a week), it should take care of just about anything. Then you have to give things for immune support to hopefully prevent future infections. As I've mentioned in other posts, kefir has worked pretty well for us. Other people have found success with multi-strain probiotics and I've heard that LDN has been pretty successful with immune modulation. Pat

Wow, that's a lot of flora. Sometimes I wonder if we can overdo it. As long as she has no issues with milk products, I suppose you could continue what you're doing for a while. However, if you can ever get her to drink the kefir on a regular basis, she probably wouldn't need all that extra hoopla (for lack of a better word). As I said before, s.boulardii is the most important probiotic to give for yeast and 3 or 4 drops of oil of oregano diluted in fish oil (yuk) daily for about a week should take care of it. If you have her on continuous abx, then you'd probably have to keep giving the s.boulardii to suppress the yeast, but if she's not on abx, then a couple of months on the s. boulardii should be enough. I know that some kids really aren't crazy about kefir. Although Gaby likes it, her twin Stefi doesn't. So I will usually add some fresh squeezed lemon & some honey. This usually works for her - it tastes a little like a lemonade slushy. Pat

Brie, Fructooligosaccharides (or prebiotics as they are also known) are food for probiotics so they actually feed good bacteria that you need to proliferate and choke out the pathogenic bacteria. You find them in ordinary foods such as bananas, garlic, asparagus, tomatoes, to name a few. Tell me the name of the probiotics that were recommended by the neurologist. As I may have mentioned before, the best thing to use when you want to get rid of yeast and you don't want a bad die-off reaction is another yeast (s. boulardii) - It's a good yeast that grows fast and takes over, thus crowding out the bad yeast - takes a little longer (maybe 2 or 3 weeks), but certainly easier on the system than diflucan. I don't know the ingredients in the cow milk kiefer that she is drinking, but some of the flavored kinds contain evaporated cane juice or other sweeteners. I prefer to use plain unsweetened kefir and add in fruit - apparently raw honey is not supposed to feed yeast, so you could use small amounts of that if you need to sweeten things. Pat

I hear you about not wanting to use the sweetened fruit flavor types. I tend to use the plain and sweeten it naturally with ripe bananas & fresh pineapple or fresh dates (usually throw half an avocado in too). There has been some controversy about agave syrup, as you say. I guess you have to be really careful to check the ingredients, but another way to sweeten besides the fruit is with raw honey. It's true that you want to stay away from excessive sweeteners if you are fighting yeast, but I don't think small amounts would hurt, especially because the bacteria & enzymes in the kefir do a pretty job in counteracting any bad effects from sugar. If there's currently a lot of yeast going on, I would definitely give s.boulardii along with the kefir just for a while as an extra boost. I have been considering making some kefir from raw goat milk. A nurse that I work with raises goats & their family drinks the milk. I may get some from her and try it. A lot of nutrients are destroyed with pasteurization and it's not all that its made out to be. If you leave pasteurized milk sit out for a while it becomes curdy and pretty disgusting in a short time, but unpasteurized milk just becomes pleasantly sour. The good bacteria in raw milk actually protects you from getting sick from drinking spoiled milk. As long as the animals and the milking utensils are clean, there shouldn't be any great risk. I found a web site that gives a lot of good information on kefir and kefir grains (you can read for days) by a man in Australia - just look up Dom's Kefir grains and it should pop up. In conclusion, I imagine that some of the brands of kefir (depending on how much sugar content or other ingredients there are) are better than others, but I can only think that any kefir is better than none, so I would start with something and then work on trying to find the best product. Pat

Alex, Our daughter, Gaby, had IVIG last October after a second major episode of symptoms which had begun that August. I think that the IVIG did help for a month or so - because when your child is in a major crisis - there's nothing like having a treatment that will fix it immediately. Unfortunately, from what I can tell by other posts and our own experience, it is not a permanent solution. After it wears off and they're exposed to another antigen (in her case viruses), it can come back again. If you can afford $10,000 IVIG treatments with each episode, then your child would be able to have minimal symptoms each time and stay on antibiotics in between (for the strep- but if there are other triggers like viruses- then even the abx won't help). I think the PEX works the same way - it cleans everything up right away, but doesn't prevent future episodes. If the child is lucky enough to react only to strep then there is a little more hope with long-term antibiotics, but if there are multiple triggers - it's basically the same as the IVIG. What would help is if they could come up with something that would definitely modulate and regulate the immune response - that's the only permanent solution. In the meantime, we've tried a lot of biomedical treatments - supplements for immune support & kefir to balance the bacterial flora in the GUT. So far, we've had good results - 6 weeks of normalcy. However, as much as I would like to believe that this was the answer, I have to be prepared that this might just be part of a wax & wane cycle and that she's just improving right now. The next episode might be just around the corner. I pray not, but time will tell. Pat

Hi Pat, I'm so glad to hear that Gaby is doing so well! Question about the kefir- I found a Helios brand kefir with FOS in different flavors at Whole Foods. The bottle says it has 7 probiotic kefir cultures and it is 2% reduced fat milk with vit. A & D. Is this the right type of kefir? It smells horrible, (sour) but my son seems to like it. What do you think? Linda I believe that is cow's milk, but if you have no issue with that, it should be fine. From what I've read, people who are trying to stay casein free seem to be OK with kefir (even if it's from cow's milk) because of the enzymes - apparently they break down casein). I still prefer the goat milk kefir (our Whole Foods carries both a plain and a blueberry flavored one), but if your son likes the helios brand, then by all means, encourage him to keep drinking it. I may, at some point, switch over to the helios brand since it is 2% reduced fat. Gaby is getting a little too chubby on all that nice whole milk fat goat kefir. Pat

Hello All, I guess we must be around 6 weeks now of very even behavior - no outbursts, no anger, no crying. Really good attention, doing a lot of work (especially homework) without any frustration or asking repetitive questions. At school there have been a few occasions where she will say that her brain feels gooey, but she is able to count to 10, then go on with whatever she is doing. Still doing the goat milk kefir smoothies in the morning. Have not really added anything new except for taurine a couple of weeks ago which our new ped. recommended to further improve her sleep - not sure if that's what's doing it, or all the tryptophan in the kefir - but she's been sleeping pretty well - falling asleep without a problem and wakes up maybe once during the night, moves around a little and goes back to sleep without talking, crying or complaining about not being able to sleep. Whatever else, her gut issues seem to be resolving. Started neurofeedback last week - had 2 sessions so far - supposed to help with concentration, memory, learning - we'll see. Now that she's so much more relaxed, this kind of therapy seems worthwhile doing because she can sit still and concentrate. Will continue to give you updates if anything changes. Keeping fingers crossed that this improvement is long-lasting. Pat

I'm not sure I understand this correctly - Is it saying that by being on a GFD, it cn actually decrease beneficial gut bacteria? Well, that wouldn't be a good thing. Then does it go on to say that it leads to the reduction of ability to stimulate the host's immunity? I'm just having a hard time following this train of thought. Did you read the whole article and have a better understanding? thanks. Pat

Emma, From what I understand, the small amount of Cdif that everyone has in their gut is generally not enough to show positive in a stool sample. However, when you are on long-term antibiotics it wipes out a lot of the good with the bad and when there are empty spaces, the cdif seems to be the one that really takes over (along with yeast). The reason that c-dif is so dangerous in the hospital setting is that there are many patients who are immune suppressed and they are almost sure to be infected by c-dif positive patients if staff is not careful in gowning & gloving. On our floor we usually don't make the visitors gown & glove unless they are planning to go into common areas that other patients will use (like the galley, patient/visitor lounge, etc). In that case they will need to gown & glove in the room and make sure to discard those items in the room before they leave the room to use those common areas. If your daughter is concerned, it's pretty simple to do a stool collection for c-diff, but I wouldn't bother until she had consistent diarrhea for several days. Again, if her white count is normal, she probably wouldn't be that susceptible. Pat Emma, I've looked into this a little further and I think I have a better understanding now in order to explain it better. The C-dif that we all have in the gut is generally inactive and is kept that way by the presence of the good bacteria. When we take antibiotics and wipe out that protection, the c-dif becomes active and infective. The toxins that it creates cause the colitis and there are some strains that have become resistant to antibiotics (which is what makes it so dangerous). Most people who are not patients in the hospital would not be susceptible to catching it from someone else, unless they are on antibiotics and lack enough beneficial gut bacteria of their own. Then it is possible to become infected because they may not have enough good bacteria to protect them from the c-dif becoming active in their gut. Pat

Emma, From what I understand, the small amount of Cdif that everyone has in their gut is generally not enough to show positive in a stool sample. However, when you are on long-term antibiotics it wipes out a lot of the good with the bad and when there are empty spaces, the cdif seems to be the one that really takes over (along with yeast). The reason that c-dif is so dangerous in the hospital setting is that there are many patients who are immune suppressed and they are almost sure to be infected by c-dif positive patients if staff is not careful in gowning & gloving. On our floor we usually don't make the visitors gown & glove unless they are planning to go into common areas that other patients will use (like the galley, patient/visitor lounge, etc). In that case they will need to gown & glove in the room and make sure to discard those items in the room before they leave the room to use those common areas. If your daughter is concerned, it's pretty simple to do a stool collection for c-diff, but I wouldn't bother until she had consistent diarrhea for several days. Again, if her white count is normal, she probably wouldn't be that susceptible. Pat