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