pmoreno

The research being done on zith's effects on biofilms is in the area of cystic fibrosis, and there have been papers published on its effectiveness in that area- it just hasn't been applied to other areas. I suspect many doctors would simply say that it doesn't apply because your child doesn't have cystic fibrosis, but, If I was trying to convince a doc to try zith, I'd bring the info on biofilms and the studies done on using zith to destroy biofilms in CF. It sure makes sense to me. However what's so confusing is when I google zith vs. augmentin I always get a ton of articles that insist that augmentin is superior to zith in eradicating strep?

This is very interesting to me because Gaby has had a speech deficit which makes it difficult for her to pronounce things exactly the way she hears them and we have had her hearing tested and they say she is able to hear sounds OK - I've been wondering if she hears quantity (loudness), but not quality (the exact sounds) - She's had a few ear infections when she was an infant, although I don't remember her having a ton of them - nothing out of the ordinary I guess. However, whenever we fly anywhere she is (more so than any of the other people in the family) completely uncomfortable (crying) about the pressure in her ears which would suggest that she might have fluid in her ears. However, she must not have had any visible signs of inflammation because that should have been picked up by the pediatrician on visits. It is entirely possible, after reading these articles about biofilms that she may have fluid in her ear with bacteria (such as strep) attached and for that reason is not really responding to the antibiotics. We have not yet tried her on zith (have asked Dr. K to put her on it, but he maintains that there's no reason to switch her off augmentin) I'll let this go a little longer, and if no improvement, will see if I can't find a way to get her on zith at least to be able to see if there's a difference. Pat

What I'm trying to figure out from all this is why some of the kids immediately do better on the zithro, but then after a few weeks of being on it, they start to have symptoms again.

I'm really interested in this abx controversy. Gaby has been on augmentin since her IVIG 6-7 weeks ago and after 2 weeks gradually started having PANDA like symptoms which have been on-going and fairly consistent now. When I mentioned to Dr. K that maybe the augmentin wasn't working for her & wanting to try zith, he rejected this idea and said there is nothing to prove that zith works better than augmentin and that her issue now is not strep (since she's on the abx), but rather just the behavior from the immune response that's been going on long-term. What I don't get is how they can have symptoms even while on the abx, why they seem better at first on abx, then slowly get worse and whether one abx is truly better than another. The other question is about this carrier thing - If someone is a carrier, but doesn't actively have strep, then wouldn't they test negative on a strep test? and if so, then how do you identify them as a carrier? Additionally, if the child herself is the carrier and keeps re-infecting herself, would that mean that she would always test positive? Gaby tested negative at the onset of her PANDAS, although she had all the typical symptoms of strep (sore throat, fever, stomach ache, headache) which lasted quite a long time (a week or more). I heard that carriers usually don't get strep symptoms ??? Pat

Sometime around puberty the thymus gland stops growing and actually stops functioning and in adults it has turned into a fatty piece of non-functional tissue. However prior to that time it grows rapidly (with the major growth occuring until about age 8, then slowing until puberty). It is responsible for the production of t cells which cause the immune response and also for the t-regulatory cells which suppress the immune response appropriately. I think the reason they say that IVIG is less helpful for older kids (close to or after puberty) is the same reason that some of these kids actually start getting better after puberty. Since there is not that constant production of t cells that can cause an autoimmune response, it means that PANDAS symptoms start going away. Also since there is no further production of t regulatory cells, IVIG can't promote the increased production of those (which would normally help to modulate the hyper immune response). That doesn't mean that the IVIG wouldn't help to repair the damage that's already done from myelin being stripped off the neurons. So it can probably help on that level still after puberty, but the effect would be slower and less noticeable than if IVIG were working on more than one level. This is just my observation from what I know about the thymus gland. I don't know if there is scientific data to support this. Pat Now that's interesting. So hypothetically speaking, IVIG would be useless on an adult, correct? That might be correct. Not only because the thymus stops "educating" the t cells that are manufactured in the bone marrow after puberty, but also because for some reason myelin does not regenerate in adults like it does in children. IVIG is helpful for adults for other disease processes, however, because it has different functions. Are you asking about an adult who has PANDA like symptoms or an adult who is using IVIG for another diagnosis?

Sometime around puberty the thymus gland stops growing and actually stops functioning and in adults it has turned into a fatty piece of non-functional tissue. However prior to that time it grows rapidly (with the major growth occuring until about age 8, then slowing until puberty). It is responsible for the production of t cells which cause the immune response and also for the t-regulatory cells which suppress the immune response appropriately. I think the reason they say that IVIG is less helpful for older kids (close to or after puberty) is the same reason that some of these kids actually start getting better after puberty. Since there is not that constant production of t cells that can cause an autoimmune response, it means that PANDAS symptoms start going away. Also since there is no further production of t regulatory cells, IVIG can't promote the increased production of those (which would normally help to modulate the hyper immune response). That doesn't mean that the IVIG wouldn't help to repair the damage that's already done from myelin being stripped off the neurons. So it can probably help on that level still after puberty, but the effect would be slower and less noticeable than if IVIG were working on more than one level. This is just my observation from what I know about the thymus gland. I don't know if there is scientific data to support this. Pat

I was curious - when you said that your son did not respond to augmentin or the other abx you mentioned - what exactly did you mean - no improvement in behavior at all or some for a while? When you started the zith did that make an immediate difference and how long has he been on it now? We started augmentin a couple of days after IVIG the first week in October - It's been a month and a half now, and I can't tell if its working or not because her symptoms are pretty much the same as they were before the IVIG (although there was a 2week period right afterwards with tremendous improvement) so I'm not really sure if her behavior now means that the IVIG didn't work very well, or if the antibiotics aren't working or if it's neither of those and I just need to be patient and wait for about a year to see resolution (which parents before me have said). Pat

I've heard from various people on this site that any antibiotic they try works great at first, then doesn't seem to work as well after awhile. So you might as well start with the lower end and work your way up. My daughter is on augmentin 250 per day and will probably stay on this. Some people swear by zithromycin (I think they were using 500mg once a week). If you can do natural garlic (one clove a day) its a powerful antibacterial (plus anti-viral & anti-fungal). You could do that for a while, then back off on abx and see what happens. That's what I plan to do after about 3 months on the abx. (well, at least that's what I'm thinking now that I'll do - don't know what I'll think in 3 months from now). Pat

The name of the product is TravaCor, Jr.

Have been reading a lot about GABA - inhibitory nuerotransmitters. They bind to receptor sites in the brain and prevent reactions to stress, anxiety, etc. If you have a deficiency of GABA, it can manifest itself in sleeplessness, anxiety, OCD symptoms, ticcs, etc. It could be that some PANDAS kids have a deficiency and when the immune system is impaired and antibodies start competing for receptor sites in the brain.... well maybe there's some connection? From everything I've read, if you take GABA supplements, it doesn't really help. Primarily because they don't believe it crosses the blood brain barrier, but if you take precursors, its possible to help manufacture more GABA in the brain. I found a site called NeuroScience which has some products specifically for children and one is supposed to promote the formation of GABA. Can't remember now the name of the various ingredients (one is taurine I think) but they are all natural ingredients that are supposed to help with anti-stress, have a calming effect. Don't know if this would turn around the whole PANDAS thing - but it could help to calm things down while we're waiting. The site also describes a couple of tests that would test the level of GABA and a few other things - you can't order the test without a physician unfortunately, but I think I will contact the doc in Florida to order it for me. Pat

Hi, I think I may have replied to another post, so I'm not sure what you've read so far, but if I repeat anything, just skim over it. Gaby had 80% remission for the first 2 weeks IVIG, then by 3rd week behaviors crept in, 4th week more, 5th & 6th week frequently not concentrating well, a lot of fears (especially by late afternoon) about "something" bothering her - telling her things, trying to steal something from her. Frequently saying she's sorry. Still waking up nightly for about 2 hrs. - then tired in AM - but going to school and functioning with some prompting from teachers. She has not had any tics (eye blinking, squinting, hand movements) really since the IVIG. This current behavior is manageable, its just that she's not learning much right now and seems very immature (a lot of imaginative play with her stuffed animals -talking through and to them). However, I am trying to be patient - have talked with a mother whose daughter is 10 now - had IVIG at 7, had one whole year of behaviors (although they gradually improved) Now has been symptom free for 2 years. She was on abx for the first year. Pat

Michele, We also found out about Dr. K through his website and my daughter was originally diagnosed this past summer by a doctor in Florida ( Dr. Bradstreet's clinic). I thought about IVIG briefly at that time, but didn't want to return to Florida because of the expense. Dr. K was closer and his website talked about the case that resembles our daughter too. The steroid burst didn't seem like a big deal to me. I'm a nurse and have enough background in medicine to understand what is risky and what isn't and I felt pretty comfortable with this. I was able to get the physician in Florida to prescribe some things since Dr. K wouldn't prescribe initially without having first seen her. He did return all my e-mails even before the actual phone consult and has consistently returned all e-mails after the IVIG without a charge. You mentioned that you're in Ohio. Someone that I work with gave me the name and phone number of an immunologist in Toledo, Ohio who does IVIG for PANDAS. I'll have to look through my pockets tommorrow morning for that piece of paper. I haven't contacted them and don't know much about their practice - since we've already done IVIG, I wouldn't need to go there, but I thought I might call and see what success they've had with their protocols, just out of curiosity. If you did decide to use them, but find that they use a dose that's different from what you want to use (I think Dr. K uses a higher dose than most, but prefers to do the infusion just once rather than multiple times since he feels its more effective that way) I would guess that they should be willing to work with a recommendation from him. I'll post tommorrow when I find that name & number. Pat

1. 7.5 2. age 2 but delayed speech - has had speech tx since then 3. 3 4. no 5. no 6. yes 7. yes 8. not aware of any 9. not aware of any 10. yes, not necessarily different during PANDAS, (actually not so much of a big deal the last few years) 11. no panic attacks separation anxiety only when wakes up in middle of night & can't go back to sleep 12. yes 13. no 14. extremely gifted artist 15. funny, giggly, happy, caring, shy in new situations, occupies her own time well, artistic, creative, imaginative

Thanks for all the great info! Pat

Hi Karen, Yes, that's what's so frustrating - not knowing what is the cause, but I think if you are smart about the diet and supplements, a lot of them will help a number of issues (like leaky gut, yeast and possibly salicylates) Sometimes it seems that there are so many things that you have to avoid - it's like - what is there left to be able to eat. I try to use common sense and avoid what I can and minimize other things rather than cutting everything out. You mention the coconut - are you using oil or giving coconut milk? I now cook with the oil, and add the coconut milk (or juice) to other juices. It's most convenient to buy it in cans, but sometimes I buy the young coconut and punch a hole in it, drain the juice. Have enzymes worked? I think I may have tried once in the past and it gave her diarrhea. Pat

From what I understand, once the immune system is damaged to the point where it over-reacts to strep, it can also over-react to other triggers like viruses and fungus (yeast in the gut). In other words anything that produces an immune response will set the antibodies off and since they don't have sufficient T-regulatory cells (which are supposed to suppress the antibodies when they've done their job), it just keeps everything flared up and inflamed. This is why, I suppose, that even kids on continuous antibiotics can still have flares because if they're exposed to viruses or fungus, these things are not covered by antibiotics. At the onset of Gaby's PANDAS last year she had very definite strep like symptoms, although she tested negative. I'll never know if she actually had strep at that time, but she did have it at least 2 times after that which was diagnosed and treated with abx. However, at that period of onset, along with the strep-like symptoms, she had developed (for the very first time) herpes simplex - or cold sores all over her mouth, tongue, gums, lips. Since that first time, she would have at least one cold sore on her lip about every other month. Now as soon as she complains of any itching, tingling or burning on her lip, I immediately put a drop of abreve (kind of expensive - about $17 for a small bottle), but wonderful stuff - if you catch it right away and apply it once or twice a day, it goes away within 2 or 3 days, versus hanging on for a week or longer. Another odd thing is that a couple of months before the onset, she had re-occuring warts on her toes (which is also a virus). I have read that garlic (more efficient if fresh - not capsules or previously crushed) is anti-viral, anti-bacterial and anti-fungal. It is supposed to be equally as good as nystatin in taking care of gut yeast overgrowth. I started using it yesterday - so we'll see. This morning I fried up a large piece in coconut oil (also supposed to be anti-viral) and then added a scrambled egg. She ate the whole thing without a problem. I also made spaghetti and added a few pieces to that. I'm just planning on adding it to almost anything I can in order that she will get it at least once or twice a day. In addition I put 1 or 2 drops of grapefruit seed extract in her spoon of fish oil in the morning. Sometimes I even give her a whole spoonful of fresh lemon juice (without sugar) although you can sweeten it with xylitol which is supposed to not only be a good natural sweetener, but inhibits yeast, as well. In that respect, its supposed to be even better than stevia which is another good natural sweetener. I'm amazed how easy it has been to avoid white sugar - I don't bake cookies anymore or buy them either. When she wants peanut butter and jelly (right now since I'm not sure if she has yeast due to the abx I'm staying away from anything that promotes yeast) so even peanut butter is out of the question for a while since it is considered to be a food high in mold content. Therefore I give her sunflower seed butter or almond butter and to sweeten it instead of jelly, I put natural raw unprocessed honey which is allowed on some yeast free diets. I've been adding and subtracting foods little by little every day so it hasn't really been that big of a deal. I won't follow any of the real strict yeast free diets because they're harsh and can make a child lose way too much weight. So I've just been watching it so that she stays away from sugar, white flour (I've been giving her sprouted bread -which doesn't taste too bad-just like wholewheat) I give her fruit juices that are mixed with vegetables juices and aren't overly sweet. I definitely don't give her orange juice or even apple or grape juice right now. I buy coconut juice and add it to any regular juice that I give her. I've also heard that its preferable to cook or season with sea salt instead of the white iodized salt. I've started doing that too. The powdered probiotics in the cold case are supposed to be best, so I mix a teaspoonful with any juice I give her. Besides that I do the fish oil, good multi-vitamin, chewable vitamin C, zinc, vitamin E. I heard that red palm oil is a much better source of vitamin E than a pill form, but our health food store is out of it right now - seems that its very much in demand lately. So when I do get it, I intend to start cooking alternately with coconut oil and the palm oil. Anyway, even if all this effort does nothing for the PANDAS, its got to make her immune system a little healthier and should help to prevent colds and flus this season. Pat

Hello all, As usual I have been reading voraciously about anything that might be connected with or explain the reason that some of our kids get PANDAS in the first place. There are probably a lot of different factors involved, but I was wondering about this leaky gut syndrome which can be caused by an overgrowth of yeast, which then causes damage to the immune system. The cause for this syndrome could be frequent antibiotic use in the earlier years of life, or it could be heavy metals in the body which can also cause problems with yeast. Anyway, I found a website which explains it pretty well and I'm thinking that if we give natural support to their bodies (instead of using a lot of drugs or extra supplements), just use things like fresh garlic (which is supposed to be the most potent anti-fungal and also anti-viral/anti-bacterial food, also oregano vulgares (not sure if that's spelled right), GFS extract for short term use, and coconut oil which is supposed to be a strong anti-viral. My thought is that along with preventing or curing leaky gut, overgrowth of yeast and other basic parasites, it will further protect against common colds, herpes (cold sores) and other viruses that they can pick up at school and be extra supportive if they're on long term antibiotics for the PANDAS. Here is the site: healthychristianliving.com/leaky_gut_syndrome.htm see what you think about this - Pat

How many PANDAS episodes has your son had and when did he start for the first time? How long do they last? Does anything help - like getting on antibiotics? I notice Buster mentioned that once on abx, floaters went away for his dd, Gaby had them with her first episode last year and now with this second episode (which started in August) she just now started having them again (in November). She's been on abx since early Oct. and so it obviously didn't help with this phenomena for her anyways. They make her really angry and she hits and grabs at them - does your son react the same way? Pat

Thanks for the info. One thing I'm always concerned about with any of these things is that I wonder if you get all kinds of false positives so that they have something to talk about in their consultation and possibly even pushing products that they would get financial gain from. I don't know, I'm just a little skeptical. I sometimes think that people use us parents to their advantage - knowing that we're desperate to find out what's going on with our kids and willing to pay any price and they come up with all kinds of wild things that maybe aren't completely proven scientifically. It seems like if they were, more mainstream doctors would use them. Another one that someone on here was doing is dry blood analysis. I read a little about it, but its pretty complicated reading and I really don't understand it. Again, its one of those things where you wonder how they can possibly come up with the diagnoses and results that they do from just looking at a drop of blood under a microscope. I would hope that all these diagnostic methods are on the up and up, but I can't help thinking that its too good to be true. Pat

Hello, With all of Gaby's symptoms right now, I am trying to rule out what I can and yeast is a possibility due to the abx and the type of behavior she has. I looked up OAT test and yeast c&s and they sound like very valuable tests which can find out more than just about yeast, but even other problems with metabolism and metal intoxication, etc. I would really like to do this, but it is very expensive for the combo ($280) If I am going to invest that kind of money, I want to be sure that it is legit - if these people at this lab aren't just trying to get your money and make up a bunch of results - especially if they can then recommend anti-yeast products that maybe they will get some profit from. The company is called Great Plains Laboratories, I think. They do the tests and the consultation for the fee mentioned above. What does anybody know about this? Pat

I think the way it works is that if the strep infection is current, the antibiotics will work to resolve it which could probably improve symptoms for a little while, but the antibodies are already still out there attaching themselves to the receptors in the brain and that just doesn't go away within a few days, it takes months (as long as there is no new re-infection which can only be guaranteed by staying on antibiotics continually) So you wouldn't really see an improvement long-term. My daughter had the IVIG, then got put on antibiotics long-term. Her symptoms were actually mild before all that for this particular episode. However, now 4 weeks into the antibiotics she is having worse symptoms than she was before - as bad as last year at this time when they first started. I know she hasn't had a chance to get strep again since she's been on the antibiotics - so the only thing it could be is just the antibodies causing problems (unless its the yeast in response to the abx). Pat

Well, of course most of you know that I would recommend Dr. K from Chicago. His approach is to give a large dose of IVIG over 2 days and that you don't need to repeat IVIG if you give the right dose in the first place. He says that smaller doses given several times are like not giving anything at all. It just has no therapeutic value. He also believes in prophylactic antibiotics for at least 3 months post IVIG and possibly up to a year. He feels that the PANDAS will go away slowly over about a year after tx and that you will have ups and downs during that year. Since we just had it done 5 weeks ago, it remains to be seen. It was good for few weeks, bad right now because of this odd behavior that I can't pinpoint - from my other posts I've mentioned this thing where she keeps seeing people who are being mean to her - could be yeast from abx, or yeast die-off from natural anti-yeast products I'm giving. The other clinic that I would highly recommend is in Melbourne, Florida close to Orlando. We went there this past summer - had Gaby diagnosed there with PANDAS - we are still in touch with them on a regular basis. These phone consults ad up (I just had one last month so I will have to wait a few weeks before I can afford to call again and pursue some of these odd behaviors with them) The clinic is called Creation's Own. Dr. Jeff Bradstreet is known all over the world - has patients from Europe, middle east & Israel. There are a couple of other doctors on the team - I prefer Scott Smith - easier to get ahold of, a little less expensive and explains things very well. They work with autism, PANDAS, PDD, most auto-immune & neurological issues. Good luck to all. Pat

Yes, I might try the kefir - wonder if they have some that is less sweet. The floaters happened earlier today, not in relation to the bath. Not sure about ocular migraines - she hasn't complained of a headache since this episode began in August. I will ask her tommorrow, though. Thanks Pat