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Everything posted by pmoreno

  1. 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 ar
  2. 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 o
  3. 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
  4. 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
  5. 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 aggr
  6. 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 he
  7. 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.
  8. 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)
  9. 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
  10. 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 - ye
  11. 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,
  12. 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 be
  13. pardon the typo - its cumanda - not cumandia. Pat
  14. 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
  15. 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
  16. 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, wha
  17. 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.
  18. 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 ou
  19. 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
  20. 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 hav
  21. 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)
  22. 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
  23. 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
  24. 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 u
  25. 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 u
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